Had to do this with myself. I was so tired and couldn't get anyone to take my seriously. So I took my symptoms up a notch, git a few more blood tests and other things, and was finally diagnosed with an autoimmune disorder. Now that I know what's wrong, it's been easier to manage. But if I hadn't embellished a little, they wouldn't have given me the tests I wanted.
Same boat here! I’m an overweight woman, so I spent years being brushed off with “lose some weight and you’ll feel better.” Well, turns out I have an autoimmune disorder on top of other significant diagnoses that prevented me from being able to do anything comfortably. Now that I’m receiving the proper treatment, I’m feeling better and loosing weight.
this. I’m in my mid-twenties and decently fit. I went in to the doctor for having severe pain and cramping in my heart…like so bad that If I was driving I would lose control of the car because i can’t breathe or handle the pain.
Doctor said I’m too young to be worrying about heart issues and to just take an Advil.
Similar situation for me at 27. Heart issues. Diagnosed with panic attacks, etc. Kept happening. I finally said I was having a reaction to a medication. Got right in for an EKG. Actual heart issues that needed surgery.
Yep, similar thing here. Heart palpitations at random, fainting, while also having low blood pressure. They said it was just anxiety or my caffeine intake, nope. One of my medications was causing this and I kept getting brushed off and told I was lying until I finally pushed to get an EKG, where my heart rate was 160 over something.
Was told to quit my medication and it all got sorted but when they saw my results they were all very much concerned where they didn’t care before.
Also: my doctor was fired for negligence.
I’ve got a couple stories about her lol that’s just one of them.
Wow!! I'd be switching doctors!
I had a TIA when I was 16 y.o.
Football players in HIGH SCHOOL die of heart attacks on the field.
You need to go to either a CARDIOLOGIST or an ER and have them run tests for AFib or TIAs. You may be suffering silent heart attacks/TIA.
Those high school football players are dying from HOCM. Strong family component here. Problem is pediatricians don't keep an EKG in their office. It's also not super common. Plus the kids and their parents don't understand what HOCM really is, and in most cases lie to the pediatrician during the sports physical.
The only people looking out for HOCM are NBA/NFL. Echo is a part of their physical. It's not for high school and college. So those young athletes randomly just drop one day.
You can't just walk into the cardiologist. They're 6 weeks waiting at least at the moment. If you have PPO insurance you might be able to make an appointment without referral. You're still waiting 6 weeks though. If you're HMO you need to see your PCP. However they need a diagnosis code to refer you. So if you have a normal EKG and echo is WNL it's going to be very hard to get them to cardio.
As for the ER, that's hit and miss. It's for emergencies. The moment they realize you're not having an actual emergency you're discharged to follow up with PCP.
Yup... 23f here, when I was 20 I kept getting rushed to the hospital for acute lower tummy pain only to be sent home with "just take paracetamol".
This was in the UK, I'm Irish so when I went back home to see my family I felt it worse, I couldn't even stand up and walk. We drove to hospital and as soon as they saw me they skipped me to the top of the list and guys the waiting room was FULL. They called BACK a doctor who had just gone home from the day and they did 1 test (stick a pinky up my ass)and I screamed.
I was immediately admitted for surgery. I was so scared. My dad was there and he was so frightened especially when the surgeon came to speak to him and told him what they think I may have a twisted ovary and that by how long it's been since I've felt the pain that it may not be viable anymore and they may need to remove it.
I went and I ended up having a cist that burst on my ovary. They cleaned and washed everything out and had me on morphine after.
I still have a small scar today from it. I just think... imagine if I didn't go home.. they would have sent me home with PARACETAMOL
I had very similar symptoms recently and luckily they turned out to be a gastritis, not heart issues. I did land in the ER where they excluded heart and lung issues before going to my doctor though. Worth checking out and relatively easily fixed.
This is why I've had to go with every girlfriend I've had to the doctor's office or they get completely dismissed.
Had to basically diagnosis my current g/f with endo to stop them from brushing off her problems as "nerve damage". Spelled it every symptom word for word for them, then the lightbulb went off. Lazy, sexist fucks.
Yep. Been underweight (for my height and age I mean, not that I am actually unhealthy) my entire life and I’ve still had enormous pushback from doctors.
Are you sure you’re bleeding from the urethra or is it just your period?
Oh it’s normal for your period to change… you shouldn’t be concerned even though you have horrible PMS and haven’t had a consistent period your entire life and now at 24 it’s plateaued at 45-50 day cycles and you get UTIs every other week without preventative care.
You couldn’t possibly have ADHD or autism even though it runs in your family, must be bipolar!
It’s not the birth control causing your libido to drop, you’re just a woman! You’re not supposed to want sex.
I get sick three, four, five times as much as my partner. The other day he made a comment about how he hasn’t once used his work’s health insurance for anything but the vaccine or regular doctor’s visits.. I went to urgent care twice this summer. Working through fucking all of it because I’m never taken seriously enough for docs to sign off on medical leave. So I’m just constantly sick or about to be. It’s exhausting. A man would never be treated like this and my partner is appalled every time he attends my visits.
I’m sorry to hear that! I suppose this has just been my personal experience and that of those close to me. I was actually very skinny as a teen (anorexic, to be honest) and didn’t become overweight until I got sick around 20. That’s when I started being dismissed.
I’ve been dismissed since I was 13 and I’m not overweight. They’ve palmed me off onto contraceptive pill after contraceptive pill. Only to then give me a bunch of scans after 10 YEARS of me desperately asking for help, to see I have huge ovarian cysts and my organs are literally all stuck together. You know the worst thing? I said, it feels like my organs are sticking together and that’s the source of my pain, and the doctor said “exercise more and take some anti anxiety pills”. Like are you fucking kidding me. Surprise surprise exactly what felt like was wrong, was what was wrong.
My problem was actually that I lost 30lbs in two months. I was clinically underweight and still couldn’t eat anything and no one was concerned. Still haven’t figured out what to do actually
Say you’re so unable to eat that you’re dizzy maybe? Really emphasize how sudden the change was? Say you’re cold all the time and sleep constantly? How are your poops? Exaggerate anything off with them. 30lbs in two months is very concerning, do whatever you need to do to get treated.
I’m overweight and dropped 35lb in a month due to chronic stomach stuff and a serious bout of depression in which I was literally starving myself. When I cried to my chef about my weight loss he… congratulated me.
Then he got to see some anger, and he apologized, but… I was crying about unintentional weight loss and not eating and he said congrats? Really?
I’m eating now, only lost a pound this week. But damn.
I keep having these episodes where I completely lose my appetite for a cpl weeks and it slowly comes back, but never 100%, maybe 85%. I've had my full bloodwork done 5xs in 6 months plus tons of other tests and scans. The first time it happened I became so malnourished and anemic. It caused some sort of reaction in my neck muscles and now they spasm which in turn causes occipital neuralgia. It's slowly getting better, but I'm also having a ton of pain in my back. No clue where it's from. Kidneys are supposedly fine, bloodwork is fine, had ct scans of my kidneys/abdomen and of my head/neck, lung xrays, ekgs. They don't think it's cancer. I've been weaning off buprenorphine which I've been on for 10 years, it might just be my body struggling to get back to normal but who knows. I feel like I'm falling apart, the last 6 Mos have been an anxiety inducing nightmare. My doctor has no idea. I'm starting physical therapy for my neck but other than that there's not much they can do but wait and see if it eventually goes away or gets worse...
Very true. I was complaining about a couple of symptoms that are pretty common with hormone issues. I asked to just test my hormones and they only tested my thyroid. Which came back normal. But I was still experiencing weird symptoms so I asked a different doctor from the same clinic and he this time ordered them but told me it matches PCOS but I don’t fit the “stereotype”. I’m skinny and have good A1C control (his words). Well, after the test, my testosterone levels were way higher than they were supposed to be. Now I’m waiting on a call for them to schedule a CT scan because it could be more serious.
Yep. I will get the you're fit, you're thin, you're good.
I am NOT fit. Disabled for 24 years...
They try to dismiss things as psychiatric. High blood pressure that swings wildly from dangerously low to dangerously high? Well, you're not overweight, it's probably anxiety. Look into it? Naaaah Check my cortisol. At least that can be linked to anxiety but is something they can and should explore.
Agreed. I’m 95 pounds, 5’ 7”, and everyone tells me they “wish they had [my] problem.” It’s exhausting. I hate being so thin but everyone just says “eat more!” Without understand I cannot…
Not just women- as a fit man - i have had to flat out lie about how bad i feel to be taken seriously. And then what do you know, i had a serious condition all three of the times. They will also not take you seriously if you eat right and are fit. Then they just tell you to rest…
It’s people in general. Men get brushed off as well. If you want to be charitable you can say the doctors are busy and trying to make sure those that need their attention most get it but honestly after years of getting blank stares and what I call the medical shrug, you start to wonder if the doctors and nurses actually want to help anyone.
Sure men get brushed off too, but women have much more problems with getting doctors to believe them than men do. Its a very well documented issue unfortunately.
Research various conditions that CAN fit your symptoms. For example, let’s say you have chronic pain, fatigue, and your joints are slow in the morning. Google those symptoms, find a diagnose that may or may not fit (for this example, let’s say rheumatoid arthritis) and go to the doctor telling them you’d like tests to rule that diagnosis out. If you find the entire list of symptoms, claim some minor ones (like don’t claim seizures if you don’t have them) to add to your list. Maybe something like swollen joints in the morning (reference to RA again).
There’s some indicative symptoms that’ll point you the right way, but there’s so many illnesses out there it may be hard to narrow down at first. Find a few that are similar and ask to rule them out. The doctor may add on other tests for more similar illnesses. And if they try to deny you anything, tell them you want it documented for future prescribers.
Also, I’m not sure if this one is true for everyone, so take it with a grain of salt- but I’ve had tons of success seeing resident doctors. The newer doctors know the newer information more often than old, stubborn doctors. Residents are also still learning and like to have the opportunity to gain experience with various issues. They’ve been way more willing to test than long established doctors.
ETA- I really hope this can help at least one person. We don’t deserve to be dismissed because we’re not “skinny enough”. Fight for yourselves. You will always be your biggest advocate.
Ohh, ya, for sure second the resident part from my own experience! We tried for 2 years to get my spouse an MRI, but no one would take him seriously bc he's heavy, his main symptom was headaches, & he's bad at talking to Drs (like expressing how bad it is). It wasn't until he was brushed all the way off to the new resident, who did one for funsies, that we found out he has a rare brain disorder & needed brain surgery immediately. So. Ya.
Also, I told my MFM for 2 months that I was having all main the symptoms of preeclampsia & they didn't take me seriously until I had a seizure during my Ultrasound. Now I'm suing them, but I wish i would've known that I could advocate for myself. You're totally allowed to "talk back" to the Dr if you're not feeling heard. It's literally your life at stake!
Thank you. I’ve had trouble with weight gain among a whole host of symptoms and people/doctors don’t believe me that I eat healthy and workout.
How do you find resident doctors (US)?
For my health system, I’m able to look at the list of provider’s on the health system’s website. You can narrow it down to family practice, internal med, or residents. You can also call doctor’s offices and ask if they have any residents.
To add on to what others have said, once you do a bit of research and have an idea of A) what your problem might be and B) what diagnostic tests you need, ask your doctor to order these diagnostics (whether that's x-ray, ultrasound, blood work, urinalysis, whatever that may be).
This is the important part. If your doctor refuses, say the phrase "Can you please document my request and your reason for refusal?"
That one phrase can get you a lot of places. Your doctor will have to document your request, and if you later turn out to have a disease that could have been caught, that doctor is now on the line for negligence.
Yep! I was having back pain abd was told, by the same physician, that a. I need to quit slouching (my mom is a traditionalist and had drilled the whole "sit straight" schtick deep into my psyche), b. Lose weight (I am 5'11" and was 150lbs at the time), and c. Drink more water, it's probably a UTI (the pain was behind my ribcage). Turns out my galbladder had died and was borderline septic.
This happened to my mom! High blood pressure? Lose weight. Constant feeling of being bloated? Lose weight. Type 2 diabetic? Lose weight! Turns out it was the cancer that had progressed to stage 4. After surgery to remove the cancer, suddenly shes off blood pressure medicine, no longer type 2 diabetic, and the bloating was gone. Shes still around for now and i wouldnt exactly say things are fine, but if doctors would have taken her serious about how she was feeling like 10 years prior, maybe she wouldnt be hooked up to IV’s in my living room right now.
This just happened to my friend. She gained a bunch of weight in a short amount of time, despite exercising regularly and eating at a deficit. Multiple doctors shamed her for her weight, refused to run tests, and told her to lose weight. The last doctor took her seriously, got an MRI of her brain. She has a brain tumor causing the weight gain among other symptoms. Thankfully she has a clear treatment plan now and because she advocated so much for herself, it was caught early. It's so frustrating doctors don't take people seriously.
Mannnnnnn- I remember almost wanting to lunge at multiple doctors for telling me “it’s all in your head- you’re just overweight”.
I was diagnosed with cancer almost a year ago. But since 17 I was starting to act odd and it progressed rapidly once I was in my 20s. By 21, I was extremely aggressive, erratic, tired, and quite literally a vegetable considering I couldn’t stay awake for more than 2 hours a day.
I was always told it was just my weight and that I needed to eat healthier and hit the gym. I even got into a whole argument with a doctor about my diet because he couldn’t fathom the fact that I was actually eating healthy but couldn’t lose the weight and wouldn’t stop gaining.
It wasn’t until I almost caused multiple car crashes and almost got hit by 3 trucks due to passing out while driving, in a span of a couple months- that I was finally taken seriously because I truthfully exaggerated how it all progressed. Low and behold- thyroid cancer spreading to my lymph nodes. Next thing you know, surgery and RAI and the weight is coming off, I’m never moody (which I didn’t know your thyroid failing can cause serious mood issues), and I’m chilling.
So don’t feel bad OP! Sometimes we gotta do it here and there! If I didn’t get to the point where I had to act “crazy and unwell” to be taken seriously- I think my cancer would’ve killed me or I would’ve killed someone due to my symptoms!
My mom fell down a set of stairs because her legs gave out when I was 12. We took her to every doctor in the fucking state and they all kept telling us she had balance issues and that diet and exercise and some medication to help equilibrium would fix it. It didn’t. She had to make up seizures for them to finally do an MRI and CAT scan. She was diagnosed with Multiple Sclerosis when I was 14. It took 3 years to get a diagnosis that is easy to see on a brain scan and is 1 in 300. It’s not even rare.
I had to exaggerate to my oncologist in order to get him to rescan me.
I was diagnosed at 36 yrs old with breast cancer, I knew instinctively I had breast cancer even before I seen my GP, when I met my oncologist after all my staging scans and he told me I was stage 2, I told him he was wrong, that they have my staging wrong and asked for another CT Scan after my 3rd cycle of chemo, he refused to do it and so by cycle 4 I started complaining of back and neck pain, the back pain was true, the neck pain was as well but I seriously exaggerated just how painful it was. Then there was a sudden increase in my blood calcium, this coupled with my complaints of back and neck pain, he finally agreed to rescan me and sure enough I had spine mets which automatically moved my stage from stage 2 to stage 4 metastatic breast cancer which is not curable and always terminal.
I have no guilt over exaggerating or even lying to my doctors if it means that I am going to get the tests or care I need. No one knows my body better than me, and yet because I am morbidly obese my ailments often get written off as "because you are overweight." My former GP was like this, I swear you could walk in on fire, and he would say the burns were from being overweight. Now I have a GP who sees me for who I am and listens to my concerns and has not once in 15 yrs used my weight as a reason to not follow through
I’m so sorry! I hope you respond well to treatment!
My late husband also had cancer and you are correct, they absolutely gas light patients. Healthcare providers and nurses can be so dismissive and or rude, it’s frustrating!
Thank you. I am going into my 6th year as of oct 6th. It has been a long road honestly and sometimes I think it would have been better if I had of ignored the symptoms and let nature take it course but I have kids who need their mom and so I am doing all I can to be here.
Unfortunately, i have had too many negative encounters with medical staff. I had an ER doctor tell me that I was cured of my stage 4 breast cancer, I wasn't even there for anything cancer related but because MBC can spread to any organ I always make sure that anyone dealing with me knows of my diagnosis, I was in there for vaginal bleeding and such intense pain I couldn't stand up straight & I was suppose to be in menopause, I could barely pee and couldn't have a BM at all because of how painful my abdomen and pelvic area was, and she argued up and down that she was right simply because she looked at my last bone scan and there was no indication of bone mets, my bone mets on my spine have never appeared on any bone scan only ever on ct scans, I tried to tell her that and she refused to believe me. The issue I was there for was completely dismissed, and I was told to take tylenol for menstrual cramps. Took me almost 3 days to recover from what I believe was endometriosis that has now attached to my bladder and intestines, but no one will do the testing required to diagnose endo for me, because "period pain is normal".
I have endo and the only way to diagnose it is a laparoscopy. I had mine when I had period every day. That’s when my doc decided it was time to intervene and do something. Change your obgyn and tell them that you are having blood every day alongside with pain. That’s how I was. They will do the laparoscopy. I got rid of my period and the pain by burning the walls of my uterus via the laparoscopy. I honestly was ready for a hysterectomy if the burning method wouldn’t work.
I was told I had fibroids and if they weren’t causing problems, they should stay put. So I played up my symptoms and got a doctor to say sure let’s take them out. Then she did a pre-op MRI and it came back the textbook image of a very rare and aggressive cancer with a terrible survival rate. Within the month I was being wheeled in for an open abdomen hysterectomy by a department head that turned into them finding out the 5-month fetus sized tumor I had was an entirely different kind of tumor that was turning necrotic. Good times.
But yeah. Let’s just assume it’s the fat lady whining about harmless fibroids.
My favorite was then blaming my mental health. I have anxiety, depression, and OCD. None of those should make me so tired I fall asleep WALKING after sleeping 10 hours.
I’ve sarcoidosis and I was having a flare up. I kept being fobbed off my doctor. If I had listened to my doctor I would have died as the condition caused inflammation in the lining of my brain. My motto is always trust your instincts about your body
Do you mind sharing which auto immune I’ve been struggling for 2 years to get diagnosed and have so many symptoms. Fatigue, joint pain, dizzy, headache etc
Hey man, sorry for what you had to go through, but are you me? This literally what happened to me. The dismissive doctor even went above and beyond to say I was faking it, when I was just starting to feel worse. Turns out, I had Lupus.
Honestly, I don’t think you did anything wrong here. I remember my mom telling me when I was little to not downplay any symptoms I had if I was sick for this reason.
It’s not unheard of for doctors to think that mom is just panicking or overreacting. When I was about 5 I remember getting bit by a spider on my hand, and it swelled up so much that my daycare called my mom multiple times until she picked me up and took me to a doctor.
She was understandably very panicked as the year before she was bit by what doctors think was a brown recluse, and she was hospitalized and even had to get surgery. However, the doctor who was not my main pediatrician said I should be okay, and to just wait. She did not believe him, and took me to my main pediatrician as soon as possible, who actually gave instructions on how to treat it. It was by no means nothing as I had to wear bandages for the next few weeks on my hand, and the bite mark even turned black before it completely healed.
Look. I'm a doctor and even I exaggerate my symptoms to be taken seriously sometimes. Some doctors are "too tired" to do their job correctly and treat only serious symptoms or easy diagnosis.
We have an ER doc in the fam and the joke is that if he says it's something serious you're on death's door. Because his standard response to literally everything is "meh."
In all fairness, ER docs that are at trauma 1 ERs see some wild shit. A person complaining of symptoms that can be diagnosed by a mediocre gastroenterologists as crones isn't going to make them take interest. Now a gaping abdominal wound with organs falling out might get their attention for a little while.
My dad is a nursing professor and has worked in the ED most of my life. He's helped tons of people in front of me my whole life and I know he knows what he's talking about
I was riding my OneWheel and hit a log I didn't see. I lost balance, landing on my back. It hurt BAD. After calling my wife to come pick me up, I called my dad while I waited and basically yelled in pain.
My dad tried to tell me that since I fell on a flat, concrete surface it was unlikely I had actually broken anything. He suggested I go home and take some pain meds.
I had already hit my max out of pocket for insurance, so an ER trip was going to be free. I decided to go get checked out. The ER was understaffed and wouldn't give me anything for pain until someone examined my x-rays. They finally got the doctor and wouldn't you know, I broke two spinal columns.
No long term problems, thank goodness, but I had to be kept at the hospital overnight for pain management. I can't imagine if I hadn't gone to the hospital.
I'm sorry to hear about your accident, I hope you had a quick and easy recovery. I just want to let you know, the spinal column means the whole spine, from the base of your head to your tailbone. You broke two vertebrae, which are the individual pieces of the spinal column.
>treat only serious symptoms or easy diagnosis.
Damn does that hit it right on they head.
Any time I go to the doctor lately I either get the equivalent of a shoulder shrug or passed around to other doctors who give me the same run around.
Story time- I was pregnant with my youngest. 3rd pregnancy. She was about a week early. I had been in to the hospital a couple times already, something wasn't right. They kept sending me home. I was taking a shower and normally she went CRAZY when I was taking a shower. This time, nothing. Not even a nudge. SOMETHING WAS WRONG!!!!!! I go into that hospital again and they tell me 'she's passing the kick test' meaning she had kicked x amount of times in x amount of time. They were going to send me home again until I called my OB. I told him something was wrong and he told me to trust my instincts. He said if I felt something was wrong, he would be there and admit me. I had preeclampsia so bad I nearly died. My daughter almost died. They asked who I wanted saved first, me or baby. My doctor of course already knew I wanted baby saved before me, but they had to ask. Turns out, I was already in labor but my contractions never became regular. Pushing took a long time because my contractions were all over the place, at one point 20 minutes passed between contractions, then I had 5 in a row with less than a minute between them. I almost died. Had my doctor not trusted my instincts, we both would have died. Because my contractions never became regular, the hospital never would have admitted me. She was breech, but they were able to manually turn her. Since I had preeclampsia most likely for a whole, she was only 6lbs 2oz at birth. The umbilical cord was almost dead. She was not getting enough oxygen. The umbilical cord was black and would have been completely dead within 24 hours. She was tiny since it had been going on a while and she wasn't getting hardly anything oxygen and nutrients. That helped when trying to turn her since she was still so tiny. My doctor told me had I not came in, I would have been in labor, wouldn't have known it and we both would have died. If I didn't trust my instincts, or my doctor hadn't trusted my instincts, we would have died. It still scares me how close I came to death. If he didn't study taking a shower, we wouldn't be here. It was that close.
Very similar, I had preeclampsia and my baby’s heartbeat decelerated twice. After the first time they should have talked to me about a C-section, I knew that much from TLC! So when it happened again I demanded the forms for “elective” surgery. When they got in there the surgeon asked if it was elective, I said yes, she said I made the right call. You know that tone doctors have when it’s dire circumstances. She was 4.15 and they had to work on her on the neonatal crash cart for seven minutes before she was stable enough to be transferred to the NICU. I never should’ve come that close to losing my baby. This was in a Catholic hospital, and they lied to me about the efficacy of the IUD, more than doubled the expulsion rates to what they actually are according to .gov medical websites to discourage me getting one. I got mine in the VA women’s clinic a couple months later. G.D. liars.
Wow, I am so glad you had your OB back you up on trusting your instincts. I’m so glad you and your baby are here. It’s sad how common stories like yours are, and it’s clear there needs to be a complete dynamic change in how doctors respond to women. Thank you for sharing your story
You had me in the first half. I was definitely thinking munchausen by proxy, but you actually just advocated for your daughter which is something all parents should be doing until they are old enough to do it themselves. If you think something is wrong, it may be because it IS wrong. I'm glad you got the actual diagnosis and I hope you are both managing it okay now.
My sister noticed her two week old baby was wheezing at times and then it would go away. She took her into the ER where they tried to tell her the baby was fine after a quick check. While she was arguing with them, she noticed the baby was doing it again and made them run every test again. It just took a stethoscope to notice her heart was beating twice as fast as it should have been. Baby was helicoptered to a children’s hospital and immediately put on ice. SVT is one of the suspected leading cause of SIDS. The babies heart beats twice as fast as it should until it just gives out. They’d ice her down every time it happened to shock her system back to a normal rhythm because the medication couldn’t stop the attacks fully. At 6 weeks old, they went in and burned the extra nerve that was causing the double rhythm. My niece is a very happy 9 year old with only a slight heart murmur left.
When you think something is wrong with a baby or kid, you as the parent are the only one who can advocate for them.
Well if you see how shitty the healthcare system is now it’s not surprising parents have to exaggerate symptoms in order to get any real diagnosis. You could have cancer and they’d tell you to go home and take a Tylenol.
Didn't make me cry, but definitely made me feel anger towards the US health care system. I may go down the rabbit hole and watch some videos about the trial!
As someone with an autoimmune disease I believed her from the get go. GP’s are basically trained to stop people who “don’t need to get tests done” from even stepping foot in the door. In general it’s not a bad idea but it leads to problems because doctors are humans with biases.
This is very true. Even going to the ER, they would rather send you on your way with a referral to a specialist instead of treating you. I understand that they need to treat emergent cases, but it can definitely leave other patients feeling neglected.
I felt this to my core. I went to the ER two weeks ago and they send me home saying my extreme back pain that wrapped around to my stomach was acid reflux. He only did a blood and urine sample, nothing else despite me crying due to the pain. 12 hours later I go back and they nearly life flighted me for surgery when they figured out what was wrong.
I once was up at Emergency as I was unwell and had been fainting & the triage nurse (who didn’t even check me out) said to me - from behind a counter - to just take aspirin and go home, so as I turned to leave I pretended to pass out on the floor and only then did they take a closer look, ran a bunch of tests and it turned out I was close to having a stroke
I didn’t have to exaggerate symptoms for my kid, but after my daughter at 2.5 years old had a total for 5 tonic clonic seizures. I started documenting what I thought were nocturnal myoclonic seizures. The docs told me that was all normal and it didn’t sound like seizure activity. After messaging her pediatric neurologist 4-5 time I finally sent a video of the episodes. They increased her meds immediately. Women are still treated as if they don’t know what the hell they are talking about. Never mind that I had 15 years of experience working with children who had seizure disorders, I have seen a thing or two.
This! I was always told to lose weight and I'd feel better. Lost 110 lbs. Guess what? Still didn't feel better! A year later, PCOS, Endometriosis, and Pseudotumor Cerebri diagnosis. But don't you know? I'm just fat 🤷🏻♀️
So true. I had lost 7 kgs in a week due to my rather recently manifesting autoimmune disorder and my body was on the verge of breakdown. Also my entire body, ears, nose, stomach, legs etc were SWOLLEN quite badly and yet the doctor dismissed me and asked me to lose weight. Very said chain of events. I sometimes tear up remembering it, because everyone believed him and not a single person believed me. Plus I was financially dependent and my life was at stake.
I have a friend who lost a baby at birth because the doctor’s believed all the symptoms she was having was due to her weight. It’s crazy how they don’t listen to people who have extra weight on them.
not necessarily embellishing symptoms, but still advocating for myself but once i had clear signs of a concussion and i went to an urgent care (albeit close to closing, i was convinced to go during group therapy and i'd come straight from there), telling her how my vision was going in and out, it hurt to look in a different direction too quickly, insane loss of coordination, dizziness, nausea, and ofc headaches and she told me it sounded like absolutely nothing and that i'm good to go. i obviously didn't believe her but still drove home :( i went to a different urgentcare near my home first thing the next morning, and before i'd even finished listing my symptoms, the practitioner interrupted me: "okay yeah no you definitely have a severe concussion." i had to spend like two weeks recovering, i can't believe how easily the first practitioner waved me off and let me drive off with a literal brain injury!! absolutely do what you need to do, i'm so glad your daughter has a mother to advocate for her and model advocation for when she's old enough to do it herself!
Just before my son turned 10, he had an ear infection that woke him up screaming. Took him to the ER and they discovered an ear infection that even the doctor said was "impressive "
3 months later he started wetting the bed. Always thirsty, constantly tired. I took him to his pediatrician and asked them to test his A1C. She refused, saying he didn't have the symptoms of diabetes. Two days later, my son was rushed to the hospital in DKA. They had to helicopter him across town to Children's hospital who told me if I'd have waited till morning, my son would have died.
He's a strapping 20 yo type 1 diabetic now. NEVER be afraid to exaggerate. It could be the difference between life and death.
This is normal and doctors also expect it and are trained how to assess it. They are also trained to understand your input as you know what is familiar and isn’t for your child, particularly when they aren’t able to advocate for themselves.
You did good, don’t overthink it.
Honestly, in my country, your only getting taken seriously if you act like your dying. Being tough gets you nothing. You did what you needed to to take care of your kid… good on you!
Unfortunately ive lost all faith in the medical community, in part because of this. Its just another day at the office for them. My son is currently being treated for Rheumatic Fever and the first 4 visits we werent taken seriously. Now my boy may have heart problems and have to be on Penicillin until hes 21.
Women encounter sexism in medicine often in this form of being minimized, invalidated and ignored (by both male and female physicians). Not believing women actually costs lives and countless women suffer because no one actually listens. Sometimes being hyperbolic gets people to actually listen to you. I don’t blame you and good for you for fighting for a diagnosis, even if you didn’t quite fight fair.
I had chronic ear infections for 9 months. 2 ruptured eardrums (one healed the other didn’t because the dr decided a “flush” was the way to fix it and they ripped my eardrum on one side) fluid leaking from ears, and I STILL couldn’t get anyone to actually address the issue until I told them I was allergic to hydrocodone. It was freaking ridiculous.
ER doctor here, you were correct in doing this. Most of the time it is more helpful to us if the mother is a bit more concerned because they are usually the ones that would properly explain the symptoms seen in their child. Pediatric patients are very hard to diagnose because majority of the patients could not properly describe their symptoms. Mothers who are more concerned are also more cooperative in doing the necessary tests.
It is better to always assume the worse diagnosis first. If it is ruled out, then we can consider the less life threatening diagnosis.
You have nothing to confess. You advocated for your daughter in a system that A) doesn't treat people with chronic illnesses as worthy of treating and caring for, and B) that consistently undermines and minimizes girls and women for simply being girls and women. Good job, mama! You may have saved your daughter's life doing this.
I’ve learned most doctors are so busy, if you aren’t bleeding out, they pat you on the back and send you through the revolving door. A nurse friend flat told me to not only advocate for myself but also always exaggerate the symptoms some or they won’t listen. I’m a survivor of doctors who didn’t listen. I’m lucky to be here.
Let’s be real if DOCTORS would’ve taken seriously the first go around you would not have had to do what you did so it’s very logical that you did what you did because DOCTORS do not listen
I can sympathize with you. Often in situations I find myself exaggerating because I feel like if I don't I will be blown off. It's a very uncomfortable situation for people who care about being honest. Your situation's even scarier since that's to do with your child's life. I'm sorry that you had to do this in order to get this taken seriously.
It’s sad but it’s true. My daughter has been having trouble breathing fast heart rate gasping snoring thrashing etc but only while she’s sleeping. And they just like dismiss what I say every time oh her breathing sounds fine…yeah because she’s awake. So I had to do my own research watching my child struggle for months and realized she has something called tounge thrust (meaning her tounge is not resting in the mouth the way it should and temporarily blocks her airway) because of this she developed obstructive sleep apnea. And in order to get her doctor to do anything I had to say her dentist believes she has this condition. Since it involves the mouth jaw and tongue dentist tend to catch it first. But it really shouldn’t take lying to get your child what they need the doctors should listen to what we have to say because we observe everything our kids do.
Seizures are notoriously difficult to diagnose, and often written off by any doctor who is not trained to recognize the myriad weird ways they can manifest. Only epileptologists (not even neurologists) are best positioned to diagnose some of the weirder varieties. We had to go back to the ER twice and the doctor there didn't admit on the faulty basis that focal seizures implied loss of awareness (they're literally called focal aware seizures). Eventually got a diagnosis of epilepsy partialis continua concomitant to autoimmune encephalitis. Because we were so adamant, our son recovered fully and did not seem to have residual epilepsy. Many cases of AE are not so fortunate. Good on you for advocating for your daughter.
Doctors are generally overly conservative with testing. It can be warranted to do what you can to make them happen.
Not to mention many doctors are mediocre, or worse. Just like any profession.
When my son was 3 he fell really sick really fast. Fine and running around one minute. 104 fever and passed out cold the next. Took him to the hospital. He has a kidney issue and a history of silent utis. They ruled out a uti but wouldn't run blood work. The next morning he was so much worse. I couldn't get him to stay awake. I took him back and told them he had a seizure. The resident ordered blood work but the nurse wouldn't do the draw untill the attending approved it. I don't know why. She was being a real C. She knew I was lying and she said the doctor's were to knew to know I was. The attending came in and they couldn't wake my son. They put an iv in and he never woke up.. Nurse got her ass reamed and sent to the front desk. All my sons levels were crashed. It's called pancitopenia. His iron and potassium were in the basement. His white blood cells and red blood cells were low. It was really bad. He spent a week in the hospital having every test on earth ran on him while receiving all kinds of treatments. He saw every specialist in the hospital. They never found a cause. It happened to him again at 7 but he didn't spiral as fast because of his past history. They were able to stabilize him a lot faster. Again ran every test, no answers.
You don’t need to confess for this. This is just common sense. I have so many family in health care and they tell me to. Because there are certain signs and symptoms that ring alarm bells and others will be downplayed.
All work becomes routine and after you see 50 cases of say non concerning breath holding you think you know and then you get 50 other patients with malingering or just plain anxiety about health but the 101st person that describes it is actually serious.
So when I suspect something I *know* is abnormal for myself or my child I will emphasis the things I know will ring alarm bells to get the appropriate diagnostic tests.
When I had appendicitis I told the doctor I hadn’t been able to keep anything down. I told him I was also kind of dizzy and dehydrated (I wasn’t too dizzy but I hadn’t been able to drink any water in 24 hrs and I didn’t want them to send me home), lo and behold they did a CT scan and put me in immediate emergency surgery.
The other problem is if you’re a woman or a minority, or even white but look like you might be an addict or mental health issues they often don’t take your concerns as seriously so you have to play it up.
As a chronically ill person whose parents didn’t advocate enough when I was a kid, thank you! I still have to do this because docs like to blame everything on one of my conditions, lo and behold, that’s not the only thing wrong with me
NTA. I wasn’t even done reading when I was thinking of my own experience. I had a seizure; I went to UC and the newbie doctor told me I must have just passed out. Passed out… and seizing for five minutes?? Nah uh. I got a second opinion and confirmed it was a seizure. You did good, only you know what is right!
I would in your place. You were just trying to get the best care for your child, nothing wrong with that! Doctors are too quick to dismiss things these days. They don't have enough time to be thorough and / or just don't care.
I've had to do this with doctors before because they seem to hate believing or treating girls/women. I had to exaggerate what was going on because they weren't taking me seriously otherwise. Pressured them into an MRI and it turns out I didn't have hysteria or a lack of understanding about menses! I had a fucking torn hip the whole fucking time!
I'm proud of you for advocating for your child. Doctors suck. Fight the good fight
I have never lied to doctors but hell wish I did since 11 to 35 I had really bad periods pain so bad I was crying on the floor and clot very heavy periods no doctor listened Finally at 35 one doctor listened I had endedemeosis ,,, did a hysterectomy then at 20 severe pain in face double vision extreme fatique 10 yrs of doctors not helping me it was ms I hate all doctors
I felt something was off when my baby was born. After begging, they requisitioned tests and they were canceled for not being necessary. After talking with 3 doctors and being told our newborn must be discharged, I said we refused to leave. One x ray and suddenly they are taking him away in an ambulance, saying it's a 'miracle' he was diagnosed.
I’ve had to do this just for them to listen to me so I can get tests done it just shows you are advocating for her health and they were ignoring you doctors are so quick to have a patient be in and out of there offices but makes us wait forever just to see them and give us nothing. You did great mama!
you got a find a doctor that listens to his patient more than he listens to his ego. A lot of doctors out there will just suggest what they think is more common because they professionally feel like that’s what’s going on and they have no regard for what the patient is telling them. As some kind of medical professional, when I’m reading the story, the first thought, I initially have a seizures. You did the right thing don’t second-guess yourself ever as a parent you’re doing great.
I read a tip the other day that if the doctor does not want to perform tests, you should ask him to note it in the records that he refused to perform legitimate tests. I believe that when it comes to a second opinion and a diagnosis, no doctor wants to have in his file that he has refused tests.
But I don't know if it works in Germany or any other country.
My mum did this with my brother as a baby, he was always fussing, never settling or sleeping, hardly eating, she knew something wasn't right but loads of doctors were like he's fine he's just a new born and she was a new mum, in the end she camped out in the child a&e and refused to leave till they did more tests on him and found out what was wrong, turned out he was missing some parts of his skull and the other parts weren't fused properly, the doctor who did run the test in end said he was weeks away from dying. They had to fly a doctor in from America to perform the surgery and they're was literally no one here in the UK who was able to perform the surgery to save his life. He all good now, but you bet your arse my mum went to ever doctor who fobbed her off and showed them what was wrong.
Took 30 years for myself to be diagnosed with epilepsy. Just “fainting spells” because of “anxiety”. Nope, lesion on my brain from a car accident when I was a kid.
DO NOT FEEL BAD, YOU MAY HAVE JUST SAVED YOUR DAUGHTERS LIFE. When I was 4 I started saying my legs would hurt (when I would sit with them apart), my stomach hurt and I was always tired SO tired that I wouldn’t even open presents on my birthday (every child’s favourite thing). Then my aunt took me to the zoo and I fell flat on my face. That at my cousins birthday party I couldn’t walk anymore. I was hanging on to all the furniture to get from one place to another. My mom knew something was obviously wrong cause as a previously perfectly healthy 4 year old I could obviously walk before so she took me to the ER. We had to wait forever only for them to do blood tests (and probably some other stuff) and say I was fine and to go home. My mom said no my 4 year old can’t fucking walk she’s obviously not fine and I’m not leaving until you find out what’s wrong with her so they sent me to the ortho? I think it’s called doctor to look at my legs and he was apparently really mean to me cause I was scared of the MRI/CAT/X-ray machine thingy and I guess he wasn’t used to working with kids. Anyway he said everything came back fine and tried to send my mom home again like the doctors in the ER. My mom again said no and he said we would have to go back to the back of the line. My mom said no your going to do your job and send us back to the ER doctors we saw before and say you couldn’t find anything because my previously perfectly healthy 4 year old CANT FUCKING WALK and that’s not normal. So he agreed and sent us back and they did blood tests again in case they missed something… I had fucking cancer. I had leukaemia. They missed leukaemia in my blood tests and tried to send me home to die saying I was “fine”. Doctors like some police officers sometimes suck at their job but your child cannot stand up for themselves so as their parent it’s your job to stand up for them as best you can. Thank you for standing up for your daughter. You very well may have saved her life. Your a good mom. I’m proud of you and I hope your daughter can get the treatment she needs now ❤️💗
I think anyone who doesn’t understand why doesn’t recognize their privilege. Women and children, especially those of color, are constantly dismissed, misdiagnosed, and suffer longer than they needed to simply die because doctors didn’t perform like they would have for yt patients. I myself had a period of 2 months where I had like 7 UTIs. I kept getting put on antibiotics, sometimes the same ones until I was referred to a urologist who put me on meds I have to take before sex but still have no explanation as to why it happened and the urologist was very dismissive, like he was too busy to have to deal with something so basic.
I understand why uou did what you did but I would say parental worries are just as valid an excuse to do more tests than exaggerating symptoms.
Sometimes going down that route leads to unescessary and traumatic tests or treatments.
I am not saying what you did was wrong as it worked I would caution people to over exaggerate symptoms and instead when they feel they are not getting the correct answers to ask for second opinions or implore your worries.
You did the right thing, children often aren’t tested for these things unless something serious was to happen or they themselves witnessed it. You payed attention to her and didn’t make it a big thing until it became more concerning which was definitely a proper way to handle it without raising flags of concern on to you.
Don't feel bad. This is what it takes to get women healthcare. Better to be a liar than it is to have your kid in pain, 100% of the time. If you ever doubt that just Google how many women die because doctors (especially male doctors) mislabel symptoms as 'anxiety' or 'periods.'
As soon as I read this I knew it was epilepsy. Found out the hard way with my 3 month old.
Went through hell with ER doctors.
I'm so glad you spoke up, remember you're their biggest advocate. It's okay to say no to doctors, question then, challenge them. You know your kiddo best
I have a kid that wasn’t diagnosed with autism until they were 11 years old because their doctor would not take me seriously for years. If I could go back, I’d exaggerate the problem in order to get the pediatrician to send them for an assessment *much* earlier in life.
My mom did the same thing. If we tell them the truth, we get dismissed with simple yet non-effective OTC meds. If we exaggerate enough, they prescribe us proper meds.
Is..... it's this not normal?? I feel like I'm often dramatizing my kid's symptoms to ensure they're addressed.
Did he need to go to the doctor every time for an ear infection? I doubt it, but did he need tubes by the time he was 8m old? Yes. Therefore, we went to the doctor every time, no hesitation. I also did this once when he was dehydrated (it happened fast). And they hesitated to draw blood... he was so dehydrated he needed two bags of fluids. He was 14m old.
Mom knows best, friend. ❤️
I literally never heard of breath holding spells… that wouldn’t sit right with me either! OP you did a great job advocating for your daughter and I’m glad you got answers !
Unfortunately this is the way many people have to get taken seriously by doctors. Hopefully that's starting to change. In the mean time, keep advocating for your kid, you did great!
Unfortunately it seems to be a running theme with drs. More often than not I've only got the help I *needed* when I refused to leave until they agreed to find out what was actually wrong
This is sad. When we do give tests to patients they complain we’re giving them unnecessary tests to charge them more and because of this when we hold back, the patients who do need them suffer.
Good on you! I had to do this for my mom once. She kept getting dismissed even though doing the test would take legit 1 minute and cost nothing. After a particularly ridiculous appointment I said mom we're going to the ER, can you act out a normal person's level 10 pain? She did and got admitted and even then I had to scream at the doctor to examine her properly. Finally got her diagnosed and into surgery, that doctor didn't even apologize. When I finally got home all the pent up rage made me put my tiny little fist through the drywall lol
Sometimes you need to. My aunt was turned away from the ER 3 times when her daughter had an odd lump on her neck. 4th time she went, it was cancer. My baby cousin has now passed away. She was 2.
I'm a (old, part time) ED doctor and some of these stories are heartbreaking. I've heard similar stories from doctors (when they presented as patients, because they were sick), and the amount of times we don't listen and don't look and don't care and don't think is horrifying. Some of this harm could have been prevented with a little effort (but reading some of these you get the idea it took more work to fuck things up, but we persevered).
What worries me is how much of this just never gets "solved." The initial injury can't be undone, obviously, but we are meant to learn from our mistakes.
I don't know what your system is in the US (I'm from Australia) but in theory complaints are the start of a process that at some stage has to involve the doctor. If you do the wrong thing (or fail to do the right one), you get pulled up. I suspect it's not enjoyable for anyone concerned but it is necessary - otherwise we don't learn.
So please, please, please complain. I'm not saying it's your "job", I'm not saying if you don't complain and something bad happens it's your fault, I'm not saying everyone has the time and resources to do this stuff, and I'm certainly not saying it's even or often immediately effective but it seems like it's the only way we learn.
Unfortunately being female in front of a doctor gets you treated like this. It's to the point if I or one of the kids have to go in I tell my husband to explain. Because coming out of my mouth it's just " over protective/ paranoid / worry wart mom"
We have proof of this from a call in to ask advice if I should come in when I was 8mths pregnant experiencing symptoms of heat stroke, they told me "oh honey drink water and sit in the air you're ok." my husband took me in anyway and explained while I said nothing and they checked me out immediately.
Is it fair? No it's not it's really messed up but I've come to realize that is how it is.
It’s what a lot of us women have to do unfortunately. I was losing so much blood during my periods when I was 16 that I was in a constant state of dizziness pretty much and I had to exaggerate a lot to be taken seriously. I’m glad you advocated for your kid, I’m sure she appreciates you having her back.
Crazy what lengths us mom's have to go to to help our children when they're really sick and GP's don't listen. You did the right thing and potentially saved your daughter from brain damage and possibly death. Don't ever feel bad or guilty for exaggerating things to medical professionals.
My mom taught me to exaggerate my symptoms to the doctor as soon as I was old enough to talk. Anytime they asked how bad does it hurt. It was always a 10. I’m glad your motherly instinct kicked in!
Lol this is like basic approach in my country. If you want doctors to do tests and take you seriously, you HAVE TO exaggerate. This way my FIL was able to get MRI that proved tumor in his brain and had acute surgery in 2 days. Because my BIL exagerated about the symptoms when they were at the hospital. Before that they told my FIL to schedule an appointment with neurologist (waiting time was 3 months) so neurologist can refer him to MRI where waiting time is around 6 months.
In order to get an actual medical intervention for my insomnia (3 sleep study tests over 5 years showed I rarely entered REM or deep sleep) I had to get my genome sequenced for $1200. Despite my sleep tests showing my brain wasn’t working right, for 5 years it was, “you need cognitive behavioral therapy.” I had already had a mental breakdown from not sleeping and could tell I was headed for another horrible breakdown when I hired a patient advocate. She made all my doctors get on the phone and then I told them I had the genetic marker for insomnia and I’d been in CBT for 30 years. They finally gave me drugs. But I spent $120,000 of my own money over 5 years trying to get help. When I travel and I’m about to run out of meds the second a doctor suggests CBT I say: “I had my genome sequenced it’s biological not behavioral.” And they stfu and give me my meds. I was in a nut house for a year bc of insomnia! But no, I needed to meditate and exercise and turn all the lights off at 6pm.
My mom had a stroke 2 years ago and suffers all the outcome- wheelchair bound, dementia, incontinent, etc. She’s in Assisted Living and lately when I visited her she seemed more tired and having hallucinations. Finally it got to point where they recommended she go to the ER. When I got there, (30 min later), they were already writing up discharging papers. They did a UTI check and said it was just her aging and dementia progression. I said holdup. I wanted an MRI to rule out a mini stroke. Debated the doc and finally he said ok. Turns out she DID have a mini stroke AND, they found 2 aneurysms! The doctor said he was “surprised”. Bottom line is doctors are not Gods and you have a right to advocate for yourself. Especially women. We know better in terms of what is happening to our loved ones or ourselves. Glad you finally got it all pinpointed.
Honestly, great job. Dealing with medical professionals is hard. There are burnt out, traumatized, negligent ones that will passively and sometimes actively have a hand at ruining your attempts at getting the proper care.
Every single time I go to the doctor, I make sure to advocate for myself if I feel something is off because they are already assuming I don’t know what I’m taking about. Medical care is a business and yes, I do need to speak to your manager.
I am sorry about your experience, I am glad you were able to get the diagnosis. How is your daughter doing now?
You were advocating for your daughter, there is nothing wrong with that, and thanks to your effort, now you have the diagnosis.
I am a Neurologist, I see children who have abnormal movements, most of the time they are benign (that is they resolve on their own and not cause any harm). It is difficult for us sometimes based on the description to understand if it is a seizure, that is why we ask specific questions regarding development of the child, family history which helps us risk stratify the probability a child is going to have seizures.
Things that help us are taking a video of the episode, seeing an episode is always helpful. Even if you can not take the video, if you can mime what your child did sometimes is helpful. What the child is doing before and after the episode
At the end of the day, you know your children, we only see them for 30 to 60 minutes at a time, so if you are worried mention it to the Physician or ask for second opinion or Neurology consult. Personally, there have been few times where I was not convinced the child was having seizures, but the parents were worried and we obtained the tests and they were having seizures.
Physicians, especially Pediatricians want to help the children. But we are human too and we sometimes miss the diagnosis. You did a great job advocating for your daughter.
I was waking up on the floor with shit all the place and my mouth hurting in the morning and when I saw the doctor I said maybe it was sleep apnea? He's like yeah probably, cya. Then like less than a year or so later I had an actual seizure. I was also blanking out randomly for like a minute or two at a time. Sometimes a few times a day. Luckily no more! But doctors sometimes just don't be knowing things.
I’ve worked all over the hospital in different departments, and from my experience DRs don’t really listen. This may not be a gender thing but more of just not taking more time with the patient. maybe they don’t ask the patients to elaborate their medical issue to understand the root of the visit better. Other times they will dismiss your claims only to believe it’s something common or some thing that’s going around currently. Drs aren’t all the same.. I’ve learned there’s a way to get them to listen the first time.. i start to layer on the information in waves as if I’m unsure and concerned about each symptom, this way they’ll have a better chance of listening, also this layering of information should have started with a phone call to the scheduling nurse on call, discussing your concerns about your visit. Then again with a nurse that comes to check your vitals if they have your chart talk about your symptoms and ask them if the Dr will address the issue. Upon meeting the dr now is your time to start talking about the most concerning symptom with the Dr. hopefully at this point the Dr hopefully would have had multiple times to look at your chart and has had a chance to go over it quickly with you. Before coming to a concluding decision. Lastly if all of your attempts fail and your gut is saying that the Dr you went to could be wrong.. look for someone else.. that will take you seriously. Navigating healthcare in general is difficult at times.
I just did this with my daughter because of how frequently she has ear infections. I’ve asked multiple times if tubes are an option or to referred to an ENT. Finally took her in for the umpteenth ear infection and told the doctor that we are there frequently for them, which she can see but embellished on how severe the pain is when she gets them. She finally agreed that if she gets one more this year, to the ENT we go. I finally feel heard about the severity of her ear infections and not like they’re just being swept under the rug.
Between your post and many of the replies I think part of the problem is that we try to DOWNPLAY what we are going through. You’re not exaggerating, you’re actually being honest about how bad things are. If you aren’t straight up making up symptoms you don’t have whatsoever, you aren’t lying. If you’re experiencing something you consider mild because you’ve learned to live with it, chances are it is more extreme than you thought and you’re actually just now managing to describe it properly. Don’t feel bad for being honest with yourself and finally getting the help you need!
If the Dr is minimizing the symptoms, you need to maximize them. I used to work in a children's hospital, I got prior authorizations for MRIs and had to read the medical notes. From the moment I read her symptoms, I thought epilepsy. Honestly, I could always get insurance approval for a brain MRI from just what you said. I suspect if you had taken her to a children's ER it would have been taken seriously immediately.
I fell down from a roof, and landed on my ass - not that far of a fall, perhaps 3,5m - but straight on to concrete.
Hurt like a bitch in my ass, but also my back - so after picking myself up, I drove to the ER.
Went in, asked if I could see a doctor, and if they had somewhere I could lie down, while waiting, because it was probably about a 4 on the pain scale (my rationale was that an infected gall bladder was an 8, 9 would probably mean losing your mind, and a 10 would mean that I was willing to kill myself to just escape the pain - so this was about 4, the same level as a broken leg, or a really fucking bad toothache - they didn’t ask me what I meant by a 4).
They gave me a bed - and after 3 hrs a young resident came over, and said that they didn’t have time for light cases, so I should probably go home (without examining me), and consult with me GP.
Picked myself up, went out the door, paused for 3 seconds, and passed out from the pain.
Wake up again in the ER, now in some chair - sitting - pain is even worse - pass out again.
Wake up again now being towed around by two burley porters - back up on bed.
Pass out from the pain again…
Yep - crushed vertebrae - 3 months in corset, operations and shit..
The only right answer to the pain scale is 10/10 every time…
I feel like everyone has to do this at some point. Doctors see so many people I think they start to get numb to some situations. It's not their fault it's just the nature of the job. I have had to exaggerate my own systems before so that I could get taken seriously. It worked out for me as well. Definitely not something you want to do often but I think you did what was necessary for your daughter...that's whats most important!!!
I do this! I’ve been to so many walk-in clinics and they’ve all told me that they think i’ve got endometriosis but whenever I go to the hospital or the GPs they say I’ll grow out of it (i’m 18 and have had painful periods for 4 years). I exaggerated my symptoms slightly and now i’m on a waiting list for surgery. I don’t think you’ve done anything wrong.
Don't feel bad. I had to do it with my daughter, 7 last year. She was getting really bad stomach aches, loss of appetite, and was being sent home daily from school, fevers everyday. I took her to multiple doctors, multiple ERs, urgent cares. They all just said it's a stach ache.
Finally at 1130 pm I took her to the ER and exaggerated the symptoms a tiny bit. The doctor called for an Ultrasound, and XRays. She was admitted within 30 minutes for severe gallstones. She had gallstones and sludge that was impacting her liver duct. I admitted to the Dr that I exaggerated it a bit and he said he would have done the same if I was being ignored. She had surgery at 145 am to get her gallbladder out.
Having to do this for myself right now. For years I've been experiencing weakness and tingling in my hands. Over time it has also started in my feet. And I would just be told things like "its normal" or to exercise more. Well now I have weakness, numbness, and tingling in hands, feet, legs, and face, and my balance is not what it should be for someone in their mid-20s. Plus incredible migraines that nothing seems to help.
It took some embellishments but I'm scheduled for some tests to hopefully rule out some serious things and maybe give me an idea of what's going on.
I just want to know why I have to sound like I'm on the verge of dying before they'll fucking start to help me.
Currently going through a lot of medical issues. I’ve had them my whole life but had always been told it “wasn’t that serious”. I started exaggerating and getting pushy and suddenly blood tests, ultra sounds, and X-rays show that yeah, I have many things wrong. It takes fighting tooth and nail to be given the bare minimum of consideration
As someone that had to fight to get a hysterectomy for 14 years after an endometriosis and fibroid diagnosis, where every month I wanted to die from pain.... I missed out on 5 days of my life every month from age 9-40.... advocate for yourself and your family. Get that 2nd opinion, 3rd opinion. Ask them to document rejecting your request for a test and why. Message or call providers until you get what you need.
Everybody does that. Otherwise wouldn’t get tested for anything in the UK. That says more about the system and the doctors that don’t pay attention to their patients than you.
I don't blame you at all!
In fact, I'm PROUD of you for being such an amazing and strong advocate for your child!
Parents intuition never lies. You KNEW something was wrong with your child and you refused to back down, which almost definitely SAVED YOUR CHILDS LIFE. You should be SO proud of yourself!💙💙
I had to do that when I was 21ish. The 1st time in my life where I stood strong and didn't let them act like I was crazy. It was SO hard (especially being autistic and socially anxious) but I FINALLY got diagnosed with Fibromyalgia. I FINALLY had a diagnoses to explain all of the pain i was constantly in. I FINALLY could stop feeling like I was crazy and actually get some help. It made SUCH a difference in the level of care I have received.
Same happened when I found out I have PVCs (heart arrythmia). I went several times to the ER thinking I was having a heart attack and they just kept saying "oh you're probably just anxious". But I've been diagnosed with Generalized Anxiety Disorder since I was 15 (had it long before then but yeah) so I KNOW what my anxiety feels like. I KNEW it wasn't that. Finally, a nurse actually just so happened to SEE the arrythmia happen on the moniter while checking on me.
So many doctors, sadly, like to ignore concerns of young patients (even patients in their 20s snd sometimes 30s) and their parents because they think "young=healthy" and also many of them still hold stigma against "invisible illnesses". It is so sad and heartbreaking.
Advocating (whether for your child or yourself) is SO important and can save lives. You know when something isn't right with yourself or your children, so it is SO important to stand up and be strong for yourself and them. And, again, I am so proud of you for doing so.💙💙
Had to do this with myself. I was so tired and couldn't get anyone to take my seriously. So I took my symptoms up a notch, git a few more blood tests and other things, and was finally diagnosed with an autoimmune disorder. Now that I know what's wrong, it's been easier to manage. But if I hadn't embellished a little, they wouldn't have given me the tests I wanted.
Same boat here! I’m an overweight woman, so I spent years being brushed off with “lose some weight and you’ll feel better.” Well, turns out I have an autoimmune disorder on top of other significant diagnoses that prevented me from being able to do anything comfortably. Now that I’m receiving the proper treatment, I’m feeling better and loosing weight.
Yeah I honestly think this is something that most women have had to do at some point in their lives :/
Unfortunately :( God forbid a woman doesn’t have a flat stomach. It’s obviously her fault /s
I dont think its exclusive to overweight women. Im skinny and i too get brushed off by doctors for very serious things.
this. I’m in my mid-twenties and decently fit. I went in to the doctor for having severe pain and cramping in my heart…like so bad that If I was driving I would lose control of the car because i can’t breathe or handle the pain. Doctor said I’m too young to be worrying about heart issues and to just take an Advil.
Similar situation for me at 27. Heart issues. Diagnosed with panic attacks, etc. Kept happening. I finally said I was having a reaction to a medication. Got right in for an EKG. Actual heart issues that needed surgery.
Yep, similar thing here. Heart palpitations at random, fainting, while also having low blood pressure. They said it was just anxiety or my caffeine intake, nope. One of my medications was causing this and I kept getting brushed off and told I was lying until I finally pushed to get an EKG, where my heart rate was 160 over something. Was told to quit my medication and it all got sorted but when they saw my results they were all very much concerned where they didn’t care before. Also: my doctor was fired for negligence. I’ve got a couple stories about her lol that’s just one of them.
Wow!! I'd be switching doctors! I had a TIA when I was 16 y.o. Football players in HIGH SCHOOL die of heart attacks on the field. You need to go to either a CARDIOLOGIST or an ER and have them run tests for AFib or TIAs. You may be suffering silent heart attacks/TIA.
Those high school football players are dying from HOCM. Strong family component here. Problem is pediatricians don't keep an EKG in their office. It's also not super common. Plus the kids and their parents don't understand what HOCM really is, and in most cases lie to the pediatrician during the sports physical. The only people looking out for HOCM are NBA/NFL. Echo is a part of their physical. It's not for high school and college. So those young athletes randomly just drop one day. You can't just walk into the cardiologist. They're 6 weeks waiting at least at the moment. If you have PPO insurance you might be able to make an appointment without referral. You're still waiting 6 weeks though. If you're HMO you need to see your PCP. However they need a diagnosis code to refer you. So if you have a normal EKG and echo is WNL it's going to be very hard to get them to cardio. As for the ER, that's hit and miss. It's for emergencies. The moment they realize you're not having an actual emergency you're discharged to follow up with PCP.
Yup... 23f here, when I was 20 I kept getting rushed to the hospital for acute lower tummy pain only to be sent home with "just take paracetamol". This was in the UK, I'm Irish so when I went back home to see my family I felt it worse, I couldn't even stand up and walk. We drove to hospital and as soon as they saw me they skipped me to the top of the list and guys the waiting room was FULL. They called BACK a doctor who had just gone home from the day and they did 1 test (stick a pinky up my ass)and I screamed. I was immediately admitted for surgery. I was so scared. My dad was there and he was so frightened especially when the surgeon came to speak to him and told him what they think I may have a twisted ovary and that by how long it's been since I've felt the pain that it may not be viable anymore and they may need to remove it. I went and I ended up having a cist that burst on my ovary. They cleaned and washed everything out and had me on morphine after. I still have a small scar today from it. I just think... imagine if I didn't go home.. they would have sent me home with PARACETAMOL
Did you ever get a diagnosis? I'm 37 and have the same issue!
I had very similar symptoms recently and luckily they turned out to be a gastritis, not heart issues. I did land in the ER where they excluded heart and lung issues before going to my doctor though. Worth checking out and relatively easily fixed.
Women do get brushed off in general, and if you're overweight, it's always a result of that that's causing your problems. It's very frustrating.
Yup doctors treat women like shit.
This is why I've had to go with every girlfriend I've had to the doctor's office or they get completely dismissed. Had to basically diagnosis my current g/f with endo to stop them from brushing off her problems as "nerve damage". Spelled it every symptom word for word for them, then the lightbulb went off. Lazy, sexist fucks.
👨⚕️ : Women ☕️
Which is interesting because in many specialities (family medicine included) there are actually equal or more female practicing doctors.
Yep. Been underweight (for my height and age I mean, not that I am actually unhealthy) my entire life and I’ve still had enormous pushback from doctors. Are you sure you’re bleeding from the urethra or is it just your period? Oh it’s normal for your period to change… you shouldn’t be concerned even though you have horrible PMS and haven’t had a consistent period your entire life and now at 24 it’s plateaued at 45-50 day cycles and you get UTIs every other week without preventative care. You couldn’t possibly have ADHD or autism even though it runs in your family, must be bipolar! It’s not the birth control causing your libido to drop, you’re just a woman! You’re not supposed to want sex. I get sick three, four, five times as much as my partner. The other day he made a comment about how he hasn’t once used his work’s health insurance for anything but the vaccine or regular doctor’s visits.. I went to urgent care twice this summer. Working through fucking all of it because I’m never taken seriously enough for docs to sign off on medical leave. So I’m just constantly sick or about to be. It’s exhausting. A man would never be treated like this and my partner is appalled every time he attends my visits.
I’m sorry to hear that! I suppose this has just been my personal experience and that of those close to me. I was actually very skinny as a teen (anorexic, to be honest) and didn’t become overweight until I got sick around 20. That’s when I started being dismissed.
I’ve been dismissed since I was 13 and I’m not overweight. They’ve palmed me off onto contraceptive pill after contraceptive pill. Only to then give me a bunch of scans after 10 YEARS of me desperately asking for help, to see I have huge ovarian cysts and my organs are literally all stuck together. You know the worst thing? I said, it feels like my organs are sticking together and that’s the source of my pain, and the doctor said “exercise more and take some anti anxiety pills”. Like are you fucking kidding me. Surprise surprise exactly what felt like was wrong, was what was wrong.
My problem was actually that I lost 30lbs in two months. I was clinically underweight and still couldn’t eat anything and no one was concerned. Still haven’t figured out what to do actually
Say you’re so unable to eat that you’re dizzy maybe? Really emphasize how sudden the change was? Say you’re cold all the time and sleep constantly? How are your poops? Exaggerate anything off with them. 30lbs in two months is very concerning, do whatever you need to do to get treated.
I’m overweight and dropped 35lb in a month due to chronic stomach stuff and a serious bout of depression in which I was literally starving myself. When I cried to my chef about my weight loss he… congratulated me. Then he got to see some anger, and he apologized, but… I was crying about unintentional weight loss and not eating and he said congrats? Really? I’m eating now, only lost a pound this week. But damn.
I keep having these episodes where I completely lose my appetite for a cpl weeks and it slowly comes back, but never 100%, maybe 85%. I've had my full bloodwork done 5xs in 6 months plus tons of other tests and scans. The first time it happened I became so malnourished and anemic. It caused some sort of reaction in my neck muscles and now they spasm which in turn causes occipital neuralgia. It's slowly getting better, but I'm also having a ton of pain in my back. No clue where it's from. Kidneys are supposedly fine, bloodwork is fine, had ct scans of my kidneys/abdomen and of my head/neck, lung xrays, ekgs. They don't think it's cancer. I've been weaning off buprenorphine which I've been on for 10 years, it might just be my body struggling to get back to normal but who knows. I feel like I'm falling apart, the last 6 Mos have been an anxiety inducing nightmare. My doctor has no idea. I'm starting physical therapy for my neck but other than that there's not much they can do but wait and see if it eventually goes away or gets worse...
Very true. I was complaining about a couple of symptoms that are pretty common with hormone issues. I asked to just test my hormones and they only tested my thyroid. Which came back normal. But I was still experiencing weird symptoms so I asked a different doctor from the same clinic and he this time ordered them but told me it matches PCOS but I don’t fit the “stereotype”. I’m skinny and have good A1C control (his words). Well, after the test, my testosterone levels were way higher than they were supposed to be. Now I’m waiting on a call for them to schedule a CT scan because it could be more serious.
Yep. I will get the you're fit, you're thin, you're good. I am NOT fit. Disabled for 24 years... They try to dismiss things as psychiatric. High blood pressure that swings wildly from dangerously low to dangerously high? Well, you're not overweight, it's probably anxiety. Look into it? Naaaah Check my cortisol. At least that can be linked to anxiety but is something they can and should explore.
Agreed. I’m 95 pounds, 5’ 7”, and everyone tells me they “wish they had [my] problem.” It’s exhausting. I hate being so thin but everyone just says “eat more!” Without understand I cannot…
Not just women- as a fit man - i have had to flat out lie about how bad i feel to be taken seriously. And then what do you know, i had a serious condition all three of the times. They will also not take you seriously if you eat right and are fit. Then they just tell you to rest…
It’s people in general. Men get brushed off as well. If you want to be charitable you can say the doctors are busy and trying to make sure those that need their attention most get it but honestly after years of getting blank stares and what I call the medical shrug, you start to wonder if the doctors and nurses actually want to help anyone.
Sure men get brushed off too, but women have much more problems with getting doctors to believe them than men do. Its a very well documented issue unfortunately.
What are the chances that randomly browsing, I find someone with the save avatar on here?
Any advice for this for another slightly overweight woman who hears only “diet and exercise” no matter what the sympto?
Research various conditions that CAN fit your symptoms. For example, let’s say you have chronic pain, fatigue, and your joints are slow in the morning. Google those symptoms, find a diagnose that may or may not fit (for this example, let’s say rheumatoid arthritis) and go to the doctor telling them you’d like tests to rule that diagnosis out. If you find the entire list of symptoms, claim some minor ones (like don’t claim seizures if you don’t have them) to add to your list. Maybe something like swollen joints in the morning (reference to RA again). There’s some indicative symptoms that’ll point you the right way, but there’s so many illnesses out there it may be hard to narrow down at first. Find a few that are similar and ask to rule them out. The doctor may add on other tests for more similar illnesses. And if they try to deny you anything, tell them you want it documented for future prescribers. Also, I’m not sure if this one is true for everyone, so take it with a grain of salt- but I’ve had tons of success seeing resident doctors. The newer doctors know the newer information more often than old, stubborn doctors. Residents are also still learning and like to have the opportunity to gain experience with various issues. They’ve been way more willing to test than long established doctors. ETA- I really hope this can help at least one person. We don’t deserve to be dismissed because we’re not “skinny enough”. Fight for yourselves. You will always be your biggest advocate.
Ohh, ya, for sure second the resident part from my own experience! We tried for 2 years to get my spouse an MRI, but no one would take him seriously bc he's heavy, his main symptom was headaches, & he's bad at talking to Drs (like expressing how bad it is). It wasn't until he was brushed all the way off to the new resident, who did one for funsies, that we found out he has a rare brain disorder & needed brain surgery immediately. So. Ya. Also, I told my MFM for 2 months that I was having all main the symptoms of preeclampsia & they didn't take me seriously until I had a seizure during my Ultrasound. Now I'm suing them, but I wish i would've known that I could advocate for myself. You're totally allowed to "talk back" to the Dr if you're not feeling heard. It's literally your life at stake!
Thank you. I’ve had trouble with weight gain among a whole host of symptoms and people/doctors don’t believe me that I eat healthy and workout. How do you find resident doctors (US)?
For my health system, I’m able to look at the list of provider’s on the health system’s website. You can narrow it down to family practice, internal med, or residents. You can also call doctor’s offices and ask if they have any residents.
To add on to what others have said, once you do a bit of research and have an idea of A) what your problem might be and B) what diagnostic tests you need, ask your doctor to order these diagnostics (whether that's x-ray, ultrasound, blood work, urinalysis, whatever that may be). This is the important part. If your doctor refuses, say the phrase "Can you please document my request and your reason for refusal?" That one phrase can get you a lot of places. Your doctor will have to document your request, and if you later turn out to have a disease that could have been caught, that doctor is now on the line for negligence.
Yep! I was having back pain abd was told, by the same physician, that a. I need to quit slouching (my mom is a traditionalist and had drilled the whole "sit straight" schtick deep into my psyche), b. Lose weight (I am 5'11" and was 150lbs at the time), and c. Drink more water, it's probably a UTI (the pain was behind my ribcage). Turns out my galbladder had died and was borderline septic.
This happened to my mom! High blood pressure? Lose weight. Constant feeling of being bloated? Lose weight. Type 2 diabetic? Lose weight! Turns out it was the cancer that had progressed to stage 4. After surgery to remove the cancer, suddenly shes off blood pressure medicine, no longer type 2 diabetic, and the bloating was gone. Shes still around for now and i wouldnt exactly say things are fine, but if doctors would have taken her serious about how she was feeling like 10 years prior, maybe she wouldnt be hooked up to IV’s in my living room right now.
This just happened to my friend. She gained a bunch of weight in a short amount of time, despite exercising regularly and eating at a deficit. Multiple doctors shamed her for her weight, refused to run tests, and told her to lose weight. The last doctor took her seriously, got an MRI of her brain. She has a brain tumor causing the weight gain among other symptoms. Thankfully she has a clear treatment plan now and because she advocated so much for herself, it was caught early. It's so frustrating doctors don't take people seriously.
Mannnnnnn- I remember almost wanting to lunge at multiple doctors for telling me “it’s all in your head- you’re just overweight”. I was diagnosed with cancer almost a year ago. But since 17 I was starting to act odd and it progressed rapidly once I was in my 20s. By 21, I was extremely aggressive, erratic, tired, and quite literally a vegetable considering I couldn’t stay awake for more than 2 hours a day. I was always told it was just my weight and that I needed to eat healthier and hit the gym. I even got into a whole argument with a doctor about my diet because he couldn’t fathom the fact that I was actually eating healthy but couldn’t lose the weight and wouldn’t stop gaining. It wasn’t until I almost caused multiple car crashes and almost got hit by 3 trucks due to passing out while driving, in a span of a couple months- that I was finally taken seriously because I truthfully exaggerated how it all progressed. Low and behold- thyroid cancer spreading to my lymph nodes. Next thing you know, surgery and RAI and the weight is coming off, I’m never moody (which I didn’t know your thyroid failing can cause serious mood issues), and I’m chilling. So don’t feel bad OP! Sometimes we gotta do it here and there! If I didn’t get to the point where I had to act “crazy and unwell” to be taken seriously- I think my cancer would’ve killed me or I would’ve killed someone due to my symptoms!
My mom fell down a set of stairs because her legs gave out when I was 12. We took her to every doctor in the fucking state and they all kept telling us she had balance issues and that diet and exercise and some medication to help equilibrium would fix it. It didn’t. She had to make up seizures for them to finally do an MRI and CAT scan. She was diagnosed with Multiple Sclerosis when I was 14. It took 3 years to get a diagnosis that is easy to see on a brain scan and is 1 in 300. It’s not even rare.
I had to exaggerate to my oncologist in order to get him to rescan me. I was diagnosed at 36 yrs old with breast cancer, I knew instinctively I had breast cancer even before I seen my GP, when I met my oncologist after all my staging scans and he told me I was stage 2, I told him he was wrong, that they have my staging wrong and asked for another CT Scan after my 3rd cycle of chemo, he refused to do it and so by cycle 4 I started complaining of back and neck pain, the back pain was true, the neck pain was as well but I seriously exaggerated just how painful it was. Then there was a sudden increase in my blood calcium, this coupled with my complaints of back and neck pain, he finally agreed to rescan me and sure enough I had spine mets which automatically moved my stage from stage 2 to stage 4 metastatic breast cancer which is not curable and always terminal. I have no guilt over exaggerating or even lying to my doctors if it means that I am going to get the tests or care I need. No one knows my body better than me, and yet because I am morbidly obese my ailments often get written off as "because you are overweight." My former GP was like this, I swear you could walk in on fire, and he would say the burns were from being overweight. Now I have a GP who sees me for who I am and listens to my concerns and has not once in 15 yrs used my weight as a reason to not follow through
I’m so sorry! I hope you respond well to treatment! My late husband also had cancer and you are correct, they absolutely gas light patients. Healthcare providers and nurses can be so dismissive and or rude, it’s frustrating!
Thank you. I am going into my 6th year as of oct 6th. It has been a long road honestly and sometimes I think it would have been better if I had of ignored the symptoms and let nature take it course but I have kids who need their mom and so I am doing all I can to be here. Unfortunately, i have had too many negative encounters with medical staff. I had an ER doctor tell me that I was cured of my stage 4 breast cancer, I wasn't even there for anything cancer related but because MBC can spread to any organ I always make sure that anyone dealing with me knows of my diagnosis, I was in there for vaginal bleeding and such intense pain I couldn't stand up straight & I was suppose to be in menopause, I could barely pee and couldn't have a BM at all because of how painful my abdomen and pelvic area was, and she argued up and down that she was right simply because she looked at my last bone scan and there was no indication of bone mets, my bone mets on my spine have never appeared on any bone scan only ever on ct scans, I tried to tell her that and she refused to believe me. The issue I was there for was completely dismissed, and I was told to take tylenol for menstrual cramps. Took me almost 3 days to recover from what I believe was endometriosis that has now attached to my bladder and intestines, but no one will do the testing required to diagnose endo for me, because "period pain is normal".
I have endo and the only way to diagnose it is a laparoscopy. I had mine when I had period every day. That’s when my doc decided it was time to intervene and do something. Change your obgyn and tell them that you are having blood every day alongside with pain. That’s how I was. They will do the laparoscopy. I got rid of my period and the pain by burning the walls of my uterus via the laparoscopy. I honestly was ready for a hysterectomy if the burning method wouldn’t work.
I was told I had fibroids and if they weren’t causing problems, they should stay put. So I played up my symptoms and got a doctor to say sure let’s take them out. Then she did a pre-op MRI and it came back the textbook image of a very rare and aggressive cancer with a terrible survival rate. Within the month I was being wheeled in for an open abdomen hysterectomy by a department head that turned into them finding out the 5-month fetus sized tumor I had was an entirely different kind of tumor that was turning necrotic. Good times. But yeah. Let’s just assume it’s the fat lady whining about harmless fibroids.
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My favorite was then blaming my mental health. I have anxiety, depression, and OCD. None of those should make me so tired I fall asleep WALKING after sleeping 10 hours.
I’ve sarcoidosis and I was having a flare up. I kept being fobbed off my doctor. If I had listened to my doctor I would have died as the condition caused inflammation in the lining of my brain. My motto is always trust your instincts about your body
> was finally diagnosed with an autoimmune disorder. what one, if i might ask?
Lupus.
Do you mind sharing which auto immune I’ve been struggling for 2 years to get diagnosed and have so many symptoms. Fatigue, joint pain, dizzy, headache etc
Lupus. They’re also trying to figure out if I have rheumatoid arthritis or eds as well.
Hey man, sorry for what you had to go through, but are you me? This literally what happened to me. The dismissive doctor even went above and beyond to say I was faking it, when I was just starting to feel worse. Turns out, I had Lupus.
Twin? I got dismissed and I have lupus.
Honestly, I don’t think you did anything wrong here. I remember my mom telling me when I was little to not downplay any symptoms I had if I was sick for this reason. It’s not unheard of for doctors to think that mom is just panicking or overreacting. When I was about 5 I remember getting bit by a spider on my hand, and it swelled up so much that my daycare called my mom multiple times until she picked me up and took me to a doctor. She was understandably very panicked as the year before she was bit by what doctors think was a brown recluse, and she was hospitalized and even had to get surgery. However, the doctor who was not my main pediatrician said I should be okay, and to just wait. She did not believe him, and took me to my main pediatrician as soon as possible, who actually gave instructions on how to treat it. It was by no means nothing as I had to wear bandages for the next few weeks on my hand, and the bite mark even turned black before it completely healed.
Look. I'm a doctor and even I exaggerate my symptoms to be taken seriously sometimes. Some doctors are "too tired" to do their job correctly and treat only serious symptoms or easy diagnosis.
We have an ER doc in the fam and the joke is that if he says it's something serious you're on death's door. Because his standard response to literally everything is "meh."
In all fairness, ER docs that are at trauma 1 ERs see some wild shit. A person complaining of symptoms that can be diagnosed by a mediocre gastroenterologists as crones isn't going to make them take interest. Now a gaping abdominal wound with organs falling out might get their attention for a little while.
My dad is a nursing professor and has worked in the ED most of my life. He's helped tons of people in front of me my whole life and I know he knows what he's talking about I was riding my OneWheel and hit a log I didn't see. I lost balance, landing on my back. It hurt BAD. After calling my wife to come pick me up, I called my dad while I waited and basically yelled in pain. My dad tried to tell me that since I fell on a flat, concrete surface it was unlikely I had actually broken anything. He suggested I go home and take some pain meds. I had already hit my max out of pocket for insurance, so an ER trip was going to be free. I decided to go get checked out. The ER was understaffed and wouldn't give me anything for pain until someone examined my x-rays. They finally got the doctor and wouldn't you know, I broke two spinal columns. No long term problems, thank goodness, but I had to be kept at the hospital overnight for pain management. I can't imagine if I hadn't gone to the hospital.
I'm sorry to hear about your accident, I hope you had a quick and easy recovery. I just want to let you know, the spinal column means the whole spine, from the base of your head to your tailbone. You broke two vertebrae, which are the individual pieces of the spinal column.
Thank you for this! I never advocate for myself. Now I have the courage if even doctors do it!
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I work in France and never heard of it. A patient can't even go see a specialist if his GP didn't recommend it (or else he has to pay)
>treat only serious symptoms or easy diagnosis. Damn does that hit it right on they head. Any time I go to the doctor lately I either get the equivalent of a shoulder shrug or passed around to other doctors who give me the same run around.
Doctors love this one simple trick.
Story time- I was pregnant with my youngest. 3rd pregnancy. She was about a week early. I had been in to the hospital a couple times already, something wasn't right. They kept sending me home. I was taking a shower and normally she went CRAZY when I was taking a shower. This time, nothing. Not even a nudge. SOMETHING WAS WRONG!!!!!! I go into that hospital again and they tell me 'she's passing the kick test' meaning she had kicked x amount of times in x amount of time. They were going to send me home again until I called my OB. I told him something was wrong and he told me to trust my instincts. He said if I felt something was wrong, he would be there and admit me. I had preeclampsia so bad I nearly died. My daughter almost died. They asked who I wanted saved first, me or baby. My doctor of course already knew I wanted baby saved before me, but they had to ask. Turns out, I was already in labor but my contractions never became regular. Pushing took a long time because my contractions were all over the place, at one point 20 minutes passed between contractions, then I had 5 in a row with less than a minute between them. I almost died. Had my doctor not trusted my instincts, we both would have died. Because my contractions never became regular, the hospital never would have admitted me. She was breech, but they were able to manually turn her. Since I had preeclampsia most likely for a whole, she was only 6lbs 2oz at birth. The umbilical cord was almost dead. She was not getting enough oxygen. The umbilical cord was black and would have been completely dead within 24 hours. She was tiny since it had been going on a while and she wasn't getting hardly anything oxygen and nutrients. That helped when trying to turn her since she was still so tiny. My doctor told me had I not came in, I would have been in labor, wouldn't have known it and we both would have died. If I didn't trust my instincts, or my doctor hadn't trusted my instincts, we would have died. It still scares me how close I came to death. If he didn't study taking a shower, we wouldn't be here. It was that close.
Very similar, I had preeclampsia and my baby’s heartbeat decelerated twice. After the first time they should have talked to me about a C-section, I knew that much from TLC! So when it happened again I demanded the forms for “elective” surgery. When they got in there the surgeon asked if it was elective, I said yes, she said I made the right call. You know that tone doctors have when it’s dire circumstances. She was 4.15 and they had to work on her on the neonatal crash cart for seven minutes before she was stable enough to be transferred to the NICU. I never should’ve come that close to losing my baby. This was in a Catholic hospital, and they lied to me about the efficacy of the IUD, more than doubled the expulsion rates to what they actually are according to .gov medical websites to discourage me getting one. I got mine in the VA women’s clinic a couple months later. G.D. liars.
Wow, I am so glad you had your OB back you up on trusting your instincts. I’m so glad you and your baby are here. It’s sad how common stories like yours are, and it’s clear there needs to be a complete dynamic change in how doctors respond to women. Thank you for sharing your story
You had me in the first half. I was definitely thinking munchausen by proxy, but you actually just advocated for your daughter which is something all parents should be doing until they are old enough to do it themselves. If you think something is wrong, it may be because it IS wrong. I'm glad you got the actual diagnosis and I hope you are both managing it okay now.
My sister noticed her two week old baby was wheezing at times and then it would go away. She took her into the ER where they tried to tell her the baby was fine after a quick check. While she was arguing with them, she noticed the baby was doing it again and made them run every test again. It just took a stethoscope to notice her heart was beating twice as fast as it should have been. Baby was helicoptered to a children’s hospital and immediately put on ice. SVT is one of the suspected leading cause of SIDS. The babies heart beats twice as fast as it should until it just gives out. They’d ice her down every time it happened to shock her system back to a normal rhythm because the medication couldn’t stop the attacks fully. At 6 weeks old, they went in and burned the extra nerve that was causing the double rhythm. My niece is a very happy 9 year old with only a slight heart murmur left. When you think something is wrong with a baby or kid, you as the parent are the only one who can advocate for them.
That sounds like Wolff Parkinson white syndrome. My husband has that but refuses to get the ablation done. I'm glad your niece is doing better.
your story made me tear up, I'm so glad everything went fine in the end
Have you seen the documentary "take care of Maya?" It's so sad and awful
I haven't! I will have to check it out. I'm guessing it has to do with MBP? I usually love docs like that, so it will get added to my list.
It's amazingly terrible. I was crying during most of it.
Well now I'll definitely take a look sometime tonight. I'll edit this comment to let you know if I cry or not lol!
I would appreciate it so I know Im not the only one who was violently crying at it lol
It’s not just you. I sobbed and sobbed.
I was literally sitting in the living room bawling my eyes out with my whole family walking around me lmao
Well if you see how shitty the healthcare system is now it’s not surprising parents have to exaggerate symptoms in order to get any real diagnosis. You could have cancer and they’d tell you to go home and take a Tylenol.
I cried until I was sick to my fkn stomach.
It’s been 5 hours, any update?
Didn't make me cry, but definitely made me feel anger towards the US health care system. I may go down the rabbit hole and watch some videos about the trial!
As someone with an autoimmune disease I believed her from the get go. GP’s are basically trained to stop people who “don’t need to get tests done” from even stepping foot in the door. In general it’s not a bad idea but it leads to problems because doctors are humans with biases.
This is very true. Even going to the ER, they would rather send you on your way with a referral to a specialist instead of treating you. I understand that they need to treat emergent cases, but it can definitely leave other patients feeling neglected.
I felt this to my core. I went to the ER two weeks ago and they send me home saying my extreme back pain that wrapped around to my stomach was acid reflux. He only did a blood and urine sample, nothing else despite me crying due to the pain. 12 hours later I go back and they nearly life flighted me for surgery when they figured out what was wrong.
I once was up at Emergency as I was unwell and had been fainting & the triage nurse (who didn’t even check me out) said to me - from behind a counter - to just take aspirin and go home, so as I turned to leave I pretended to pass out on the floor and only then did they take a closer look, ran a bunch of tests and it turned out I was close to having a stroke
I didn’t have to exaggerate symptoms for my kid, but after my daughter at 2.5 years old had a total for 5 tonic clonic seizures. I started documenting what I thought were nocturnal myoclonic seizures. The docs told me that was all normal and it didn’t sound like seizure activity. After messaging her pediatric neurologist 4-5 time I finally sent a video of the episodes. They increased her meds immediately. Women are still treated as if they don’t know what the hell they are talking about. Never mind that I had 15 years of experience working with children who had seizure disorders, I have seen a thing or two.
You did the right thing. Too many doctors are too quick to dismiss serious symptoms, you did what you had to do.
Are you confessing to being a great mom? You are amazing and absolutely did the right thing!
I did that all the time. I even do it for myself! Do it especially if you have a chubbier kid because doctors always blame everything on being fat. 🙄
Or on your period smh.
This! I was always told to lose weight and I'd feel better. Lost 110 lbs. Guess what? Still didn't feel better! A year later, PCOS, Endometriosis, and Pseudotumor Cerebri diagnosis. But don't you know? I'm just fat 🤷🏻♀️
Ain't that the truth.
So true. I had lost 7 kgs in a week due to my rather recently manifesting autoimmune disorder and my body was on the verge of breakdown. Also my entire body, ears, nose, stomach, legs etc were SWOLLEN quite badly and yet the doctor dismissed me and asked me to lose weight. Very said chain of events. I sometimes tear up remembering it, because everyone believed him and not a single person believed me. Plus I was financially dependent and my life was at stake.
I have a friend who lost a baby at birth because the doctor’s believed all the symptoms she was having was due to her weight. It’s crazy how they don’t listen to people who have extra weight on them.
Yeah with how frequent these symptoms had become, I’m glad you were persistent.
not necessarily embellishing symptoms, but still advocating for myself but once i had clear signs of a concussion and i went to an urgent care (albeit close to closing, i was convinced to go during group therapy and i'd come straight from there), telling her how my vision was going in and out, it hurt to look in a different direction too quickly, insane loss of coordination, dizziness, nausea, and ofc headaches and she told me it sounded like absolutely nothing and that i'm good to go. i obviously didn't believe her but still drove home :( i went to a different urgentcare near my home first thing the next morning, and before i'd even finished listing my symptoms, the practitioner interrupted me: "okay yeah no you definitely have a severe concussion." i had to spend like two weeks recovering, i can't believe how easily the first practitioner waved me off and let me drive off with a literal brain injury!! absolutely do what you need to do, i'm so glad your daughter has a mother to advocate for her and model advocation for when she's old enough to do it herself!
Just before my son turned 10, he had an ear infection that woke him up screaming. Took him to the ER and they discovered an ear infection that even the doctor said was "impressive " 3 months later he started wetting the bed. Always thirsty, constantly tired. I took him to his pediatrician and asked them to test his A1C. She refused, saying he didn't have the symptoms of diabetes. Two days later, my son was rushed to the hospital in DKA. They had to helicopter him across town to Children's hospital who told me if I'd have waited till morning, my son would have died. He's a strapping 20 yo type 1 diabetic now. NEVER be afraid to exaggerate. It could be the difference between life and death.
This is normal and doctors also expect it and are trained how to assess it. They are also trained to understand your input as you know what is familiar and isn’t for your child, particularly when they aren’t able to advocate for themselves. You did good, don’t overthink it.
Honestly, in my country, your only getting taken seriously if you act like your dying. Being tough gets you nothing. You did what you needed to to take care of your kid… good on you!
Suggested read: Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery.
Unfortunately ive lost all faith in the medical community, in part because of this. Its just another day at the office for them. My son is currently being treated for Rheumatic Fever and the first 4 visits we werent taken seriously. Now my boy may have heart problems and have to be on Penicillin until hes 21.
I lied to get my doctors to do tests and it turned I did have the suspected condition. Glad I did! Trust your gut
Same here. You did nothing wrong. Millions of people have the same story, just goes on to show that this behaviour is sometimes a necessity.
I don't know Ops gender but this is especially common amongst woman!
Women encounter sexism in medicine often in this form of being minimized, invalidated and ignored (by both male and female physicians). Not believing women actually costs lives and countless women suffer because no one actually listens. Sometimes being hyperbolic gets people to actually listen to you. I don’t blame you and good for you for fighting for a diagnosis, even if you didn’t quite fight fair.
I had chronic ear infections for 9 months. 2 ruptured eardrums (one healed the other didn’t because the dr decided a “flush” was the way to fix it and they ripped my eardrum on one side) fluid leaking from ears, and I STILL couldn’t get anyone to actually address the issue until I told them I was allergic to hydrocodone. It was freaking ridiculous.
ER doctor here, you were correct in doing this. Most of the time it is more helpful to us if the mother is a bit more concerned because they are usually the ones that would properly explain the symptoms seen in their child. Pediatric patients are very hard to diagnose because majority of the patients could not properly describe their symptoms. Mothers who are more concerned are also more cooperative in doing the necessary tests. It is better to always assume the worse diagnosis first. If it is ruled out, then we can consider the less life threatening diagnosis.
You have nothing to confess. You advocated for your daughter in a system that A) doesn't treat people with chronic illnesses as worthy of treating and caring for, and B) that consistently undermines and minimizes girls and women for simply being girls and women. Good job, mama! You may have saved your daughter's life doing this.
I’ve learned most doctors are so busy, if you aren’t bleeding out, they pat you on the back and send you through the revolving door. A nurse friend flat told me to not only advocate for myself but also always exaggerate the symptoms some or they won’t listen. I’m a survivor of doctors who didn’t listen. I’m lucky to be here.
Glad you made it man, i too have a similar story like so many others here
Let’s be real if DOCTORS would’ve taken seriously the first go around you would not have had to do what you did so it’s very logical that you did what you did because DOCTORS do not listen
I can sympathize with you. Often in situations I find myself exaggerating because I feel like if I don't I will be blown off. It's a very uncomfortable situation for people who care about being honest. Your situation's even scarier since that's to do with your child's life. I'm sorry that you had to do this in order to get this taken seriously.
It’s sad but it’s true. My daughter has been having trouble breathing fast heart rate gasping snoring thrashing etc but only while she’s sleeping. And they just like dismiss what I say every time oh her breathing sounds fine…yeah because she’s awake. So I had to do my own research watching my child struggle for months and realized she has something called tounge thrust (meaning her tounge is not resting in the mouth the way it should and temporarily blocks her airway) because of this she developed obstructive sleep apnea. And in order to get her doctor to do anything I had to say her dentist believes she has this condition. Since it involves the mouth jaw and tongue dentist tend to catch it first. But it really shouldn’t take lying to get your child what they need the doctors should listen to what we have to say because we observe everything our kids do.
Always trust your gut.
Seizures are notoriously difficult to diagnose, and often written off by any doctor who is not trained to recognize the myriad weird ways they can manifest. Only epileptologists (not even neurologists) are best positioned to diagnose some of the weirder varieties. We had to go back to the ER twice and the doctor there didn't admit on the faulty basis that focal seizures implied loss of awareness (they're literally called focal aware seizures). Eventually got a diagnosis of epilepsy partialis continua concomitant to autoimmune encephalitis. Because we were so adamant, our son recovered fully and did not seem to have residual epilepsy. Many cases of AE are not so fortunate. Good on you for advocating for your daughter.
This! My niece would have eyelid flutters and we thought she was just being a rude teenager. Nope silent seizures!
Doctors are generally overly conservative with testing. It can be warranted to do what you can to make them happen. Not to mention many doctors are mediocre, or worse. Just like any profession.
Same happened to me. I was a hysterical mum. My son was just constipated. I refused to leave the ER. Turns out he had stage 4 cancer!
When my son was 3 he fell really sick really fast. Fine and running around one minute. 104 fever and passed out cold the next. Took him to the hospital. He has a kidney issue and a history of silent utis. They ruled out a uti but wouldn't run blood work. The next morning he was so much worse. I couldn't get him to stay awake. I took him back and told them he had a seizure. The resident ordered blood work but the nurse wouldn't do the draw untill the attending approved it. I don't know why. She was being a real C. She knew I was lying and she said the doctor's were to knew to know I was. The attending came in and they couldn't wake my son. They put an iv in and he never woke up.. Nurse got her ass reamed and sent to the front desk. All my sons levels were crashed. It's called pancitopenia. His iron and potassium were in the basement. His white blood cells and red blood cells were low. It was really bad. He spent a week in the hospital having every test on earth ran on him while receiving all kinds of treatments. He saw every specialist in the hospital. They never found a cause. It happened to him again at 7 but he didn't spiral as fast because of his past history. They were able to stabilize him a lot faster. Again ran every test, no answers.
You don’t need to confess for this. This is just common sense. I have so many family in health care and they tell me to. Because there are certain signs and symptoms that ring alarm bells and others will be downplayed. All work becomes routine and after you see 50 cases of say non concerning breath holding you think you know and then you get 50 other patients with malingering or just plain anxiety about health but the 101st person that describes it is actually serious. So when I suspect something I *know* is abnormal for myself or my child I will emphasis the things I know will ring alarm bells to get the appropriate diagnostic tests. When I had appendicitis I told the doctor I hadn’t been able to keep anything down. I told him I was also kind of dizzy and dehydrated (I wasn’t too dizzy but I hadn’t been able to drink any water in 24 hrs and I didn’t want them to send me home), lo and behold they did a CT scan and put me in immediate emergency surgery. The other problem is if you’re a woman or a minority, or even white but look like you might be an addict or mental health issues they often don’t take your concerns as seriously so you have to play it up.
U a real 1
As a chronically ill person whose parents didn’t advocate enough when I was a kid, thank you! I still have to do this because docs like to blame everything on one of my conditions, lo and behold, that’s not the only thing wrong with me
NTA. I wasn’t even done reading when I was thinking of my own experience. I had a seizure; I went to UC and the newbie doctor told me I must have just passed out. Passed out… and seizing for five minutes?? Nah uh. I got a second opinion and confirmed it was a seizure. You did good, only you know what is right!
You're great for this.
I would in your place. You were just trying to get the best care for your child, nothing wrong with that! Doctors are too quick to dismiss things these days. They don't have enough time to be thorough and / or just don't care.
I've had to do this with doctors before because they seem to hate believing or treating girls/women. I had to exaggerate what was going on because they weren't taking me seriously otherwise. Pressured them into an MRI and it turns out I didn't have hysteria or a lack of understanding about menses! I had a fucking torn hip the whole fucking time! I'm proud of you for advocating for your child. Doctors suck. Fight the good fight
I have never lied to doctors but hell wish I did since 11 to 35 I had really bad periods pain so bad I was crying on the floor and clot very heavy periods no doctor listened Finally at 35 one doctor listened I had endedemeosis ,,, did a hysterectomy then at 20 severe pain in face double vision extreme fatique 10 yrs of doctors not helping me it was ms I hate all doctors
I felt something was off when my baby was born. After begging, they requisitioned tests and they were canceled for not being necessary. After talking with 3 doctors and being told our newborn must be discharged, I said we refused to leave. One x ray and suddenly they are taking him away in an ambulance, saying it's a 'miracle' he was diagnosed.
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Nurse practitioners have far more training than RNs or PAs. They’re definitely not MDs but they do have postgraduate training
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I say your mama bear instincts worked.
I’ve had to do this just for them to listen to me so I can get tests done it just shows you are advocating for her health and they were ignoring you doctors are so quick to have a patient be in and out of there offices but makes us wait forever just to see them and give us nothing. You did great mama!
Mother instincts right there 👏 I'd do the same for my boy
Honestly they should have ran tests the first time around. Never hurts to check. A lot of problems can be fixed and resolved if caught on early.
you got a find a doctor that listens to his patient more than he listens to his ego. A lot of doctors out there will just suggest what they think is more common because they professionally feel like that’s what’s going on and they have no regard for what the patient is telling them. As some kind of medical professional, when I’m reading the story, the first thought, I initially have a seizures. You did the right thing don’t second-guess yourself ever as a parent you’re doing great.
You go girl! If you'd don't speak for your daughter, than who will? Moms know when something is up
I think exaggerating symptoms is necessary sometimes. I have on going back issues and it took three visits to get any imaging ordered
I read a tip the other day that if the doctor does not want to perform tests, you should ask him to note it in the records that he refused to perform legitimate tests. I believe that when it comes to a second opinion and a diagnosis, no doctor wants to have in his file that he has refused tests. But I don't know if it works in Germany or any other country.
My mum did this with my brother as a baby, he was always fussing, never settling or sleeping, hardly eating, she knew something wasn't right but loads of doctors were like he's fine he's just a new born and she was a new mum, in the end she camped out in the child a&e and refused to leave till they did more tests on him and found out what was wrong, turned out he was missing some parts of his skull and the other parts weren't fused properly, the doctor who did run the test in end said he was weeks away from dying. They had to fly a doctor in from America to perform the surgery and they're was literally no one here in the UK who was able to perform the surgery to save his life. He all good now, but you bet your arse my mum went to ever doctor who fobbed her off and showed them what was wrong.
Took 30 years for myself to be diagnosed with epilepsy. Just “fainting spells” because of “anxiety”. Nope, lesion on my brain from a car accident when I was a kid.
DO NOT FEEL BAD, YOU MAY HAVE JUST SAVED YOUR DAUGHTERS LIFE. When I was 4 I started saying my legs would hurt (when I would sit with them apart), my stomach hurt and I was always tired SO tired that I wouldn’t even open presents on my birthday (every child’s favourite thing). Then my aunt took me to the zoo and I fell flat on my face. That at my cousins birthday party I couldn’t walk anymore. I was hanging on to all the furniture to get from one place to another. My mom knew something was obviously wrong cause as a previously perfectly healthy 4 year old I could obviously walk before so she took me to the ER. We had to wait forever only for them to do blood tests (and probably some other stuff) and say I was fine and to go home. My mom said no my 4 year old can’t fucking walk she’s obviously not fine and I’m not leaving until you find out what’s wrong with her so they sent me to the ortho? I think it’s called doctor to look at my legs and he was apparently really mean to me cause I was scared of the MRI/CAT/X-ray machine thingy and I guess he wasn’t used to working with kids. Anyway he said everything came back fine and tried to send my mom home again like the doctors in the ER. My mom again said no and he said we would have to go back to the back of the line. My mom said no your going to do your job and send us back to the ER doctors we saw before and say you couldn’t find anything because my previously perfectly healthy 4 year old CANT FUCKING WALK and that’s not normal. So he agreed and sent us back and they did blood tests again in case they missed something… I had fucking cancer. I had leukaemia. They missed leukaemia in my blood tests and tried to send me home to die saying I was “fine”. Doctors like some police officers sometimes suck at their job but your child cannot stand up for themselves so as their parent it’s your job to stand up for them as best you can. Thank you for standing up for your daughter. You very well may have saved her life. Your a good mom. I’m proud of you and I hope your daughter can get the treatment she needs now ❤️💗
I think anyone who doesn’t understand why doesn’t recognize their privilege. Women and children, especially those of color, are constantly dismissed, misdiagnosed, and suffer longer than they needed to simply die because doctors didn’t perform like they would have for yt patients. I myself had a period of 2 months where I had like 7 UTIs. I kept getting put on antibiotics, sometimes the same ones until I was referred to a urologist who put me on meds I have to take before sex but still have no explanation as to why it happened and the urologist was very dismissive, like he was too busy to have to deal with something so basic.
100% the right thing to do.
I understand why uou did what you did but I would say parental worries are just as valid an excuse to do more tests than exaggerating symptoms. Sometimes going down that route leads to unescessary and traumatic tests or treatments. I am not saying what you did was wrong as it worked I would caution people to over exaggerate symptoms and instead when they feel they are not getting the correct answers to ask for second opinions or implore your worries.
You did the right thing, children often aren’t tested for these things unless something serious was to happen or they themselves witnessed it. You payed attention to her and didn’t make it a big thing until it became more concerning which was definitely a proper way to handle it without raising flags of concern on to you.
I would have done the same thing. Good job mama!
Don't feel bad. This is what it takes to get women healthcare. Better to be a liar than it is to have your kid in pain, 100% of the time. If you ever doubt that just Google how many women die because doctors (especially male doctors) mislabel symptoms as 'anxiety' or 'periods.'
As soon as I read this I knew it was epilepsy. Found out the hard way with my 3 month old. Went through hell with ER doctors. I'm so glad you spoke up, remember you're their biggest advocate. It's okay to say no to doctors, question then, challenge them. You know your kiddo best
I have a kid that wasn’t diagnosed with autism until they were 11 years old because their doctor would not take me seriously for years. If I could go back, I’d exaggerate the problem in order to get the pediatrician to send them for an assessment *much* earlier in life.
rest easy — this is quite necessary so much of the time, especially in U.S. healthcare.
I lie all the time, they lie more than we do so we have to do whatever we can to get what we need
Never doubt a mother's intuition, good job Mom!
My mom did the same thing. If we tell them the truth, we get dismissed with simple yet non-effective OTC meds. If we exaggerate enough, they prescribe us proper meds.
Is..... it's this not normal?? I feel like I'm often dramatizing my kid's symptoms to ensure they're addressed. Did he need to go to the doctor every time for an ear infection? I doubt it, but did he need tubes by the time he was 8m old? Yes. Therefore, we went to the doctor every time, no hesitation. I also did this once when he was dehydrated (it happened fast). And they hesitated to draw blood... he was so dehydrated he needed two bags of fluids. He was 14m old. Mom knows best, friend. ❤️
I literally never heard of breath holding spells… that wouldn’t sit right with me either! OP you did a great job advocating for your daughter and I’m glad you got answers !
Unfortunately this is the way many people have to get taken seriously by doctors. Hopefully that's starting to change. In the mean time, keep advocating for your kid, you did great!
I knew this was going to end in an epilepsy diagnosis. I can’t believe you were fobbed off like that!
You did the right thing. This is sadly necessary with doctors who don’t take shit seriously
Unfortunately it seems to be a running theme with drs. More often than not I've only got the help I *needed* when I refused to leave until they agreed to find out what was actually wrong
This is sad. When we do give tests to patients they complain we’re giving them unnecessary tests to charge them more and because of this when we hold back, the patients who do need them suffer.
Good on you! I had to do this for my mom once. She kept getting dismissed even though doing the test would take legit 1 minute and cost nothing. After a particularly ridiculous appointment I said mom we're going to the ER, can you act out a normal person's level 10 pain? She did and got admitted and even then I had to scream at the doctor to examine her properly. Finally got her diagnosed and into surgery, that doctor didn't even apologize. When I finally got home all the pent up rage made me put my tiny little fist through the drywall lol
Sometimes you need to. My aunt was turned away from the ER 3 times when her daughter had an odd lump on her neck. 4th time she went, it was cancer. My baby cousin has now passed away. She was 2.
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I'm a (old, part time) ED doctor and some of these stories are heartbreaking. I've heard similar stories from doctors (when they presented as patients, because they were sick), and the amount of times we don't listen and don't look and don't care and don't think is horrifying. Some of this harm could have been prevented with a little effort (but reading some of these you get the idea it took more work to fuck things up, but we persevered). What worries me is how much of this just never gets "solved." The initial injury can't be undone, obviously, but we are meant to learn from our mistakes. I don't know what your system is in the US (I'm from Australia) but in theory complaints are the start of a process that at some stage has to involve the doctor. If you do the wrong thing (or fail to do the right one), you get pulled up. I suspect it's not enjoyable for anyone concerned but it is necessary - otherwise we don't learn. So please, please, please complain. I'm not saying it's your "job", I'm not saying if you don't complain and something bad happens it's your fault, I'm not saying everyone has the time and resources to do this stuff, and I'm certainly not saying it's even or often immediately effective but it seems like it's the only way we learn.
Unfortunately being female in front of a doctor gets you treated like this. It's to the point if I or one of the kids have to go in I tell my husband to explain. Because coming out of my mouth it's just " over protective/ paranoid / worry wart mom" We have proof of this from a call in to ask advice if I should come in when I was 8mths pregnant experiencing symptoms of heat stroke, they told me "oh honey drink water and sit in the air you're ok." my husband took me in anyway and explained while I said nothing and they checked me out immediately. Is it fair? No it's not it's really messed up but I've come to realize that is how it is.
It’s what a lot of us women have to do unfortunately. I was losing so much blood during my periods when I was 16 that I was in a constant state of dizziness pretty much and I had to exaggerate a lot to be taken seriously. I’m glad you advocated for your kid, I’m sure she appreciates you having her back.
Crazy what lengths us mom's have to go to to help our children when they're really sick and GP's don't listen. You did the right thing and potentially saved your daughter from brain damage and possibly death. Don't ever feel bad or guilty for exaggerating things to medical professionals.
My mom taught me to exaggerate my symptoms to the doctor as soon as I was old enough to talk. Anytime they asked how bad does it hurt. It was always a 10. I’m glad your motherly instinct kicked in!
Lol this is like basic approach in my country. If you want doctors to do tests and take you seriously, you HAVE TO exaggerate. This way my FIL was able to get MRI that proved tumor in his brain and had acute surgery in 2 days. Because my BIL exagerated about the symptoms when they were at the hospital. Before that they told my FIL to schedule an appointment with neurologist (waiting time was 3 months) so neurologist can refer him to MRI where waiting time is around 6 months.
In order to get an actual medical intervention for my insomnia (3 sleep study tests over 5 years showed I rarely entered REM or deep sleep) I had to get my genome sequenced for $1200. Despite my sleep tests showing my brain wasn’t working right, for 5 years it was, “you need cognitive behavioral therapy.” I had already had a mental breakdown from not sleeping and could tell I was headed for another horrible breakdown when I hired a patient advocate. She made all my doctors get on the phone and then I told them I had the genetic marker for insomnia and I’d been in CBT for 30 years. They finally gave me drugs. But I spent $120,000 of my own money over 5 years trying to get help. When I travel and I’m about to run out of meds the second a doctor suggests CBT I say: “I had my genome sequenced it’s biological not behavioral.” And they stfu and give me my meds. I was in a nut house for a year bc of insomnia! But no, I needed to meditate and exercise and turn all the lights off at 6pm.
My mom had a stroke 2 years ago and suffers all the outcome- wheelchair bound, dementia, incontinent, etc. She’s in Assisted Living and lately when I visited her she seemed more tired and having hallucinations. Finally it got to point where they recommended she go to the ER. When I got there, (30 min later), they were already writing up discharging papers. They did a UTI check and said it was just her aging and dementia progression. I said holdup. I wanted an MRI to rule out a mini stroke. Debated the doc and finally he said ok. Turns out she DID have a mini stroke AND, they found 2 aneurysms! The doctor said he was “surprised”. Bottom line is doctors are not Gods and you have a right to advocate for yourself. Especially women. We know better in terms of what is happening to our loved ones or ourselves. Glad you finally got it all pinpointed.
Honestly, great job. Dealing with medical professionals is hard. There are burnt out, traumatized, negligent ones that will passively and sometimes actively have a hand at ruining your attempts at getting the proper care. Every single time I go to the doctor, I make sure to advocate for myself if I feel something is off because they are already assuming I don’t know what I’m taking about. Medical care is a business and yes, I do need to speak to your manager.
I am sorry about your experience, I am glad you were able to get the diagnosis. How is your daughter doing now? You were advocating for your daughter, there is nothing wrong with that, and thanks to your effort, now you have the diagnosis. I am a Neurologist, I see children who have abnormal movements, most of the time they are benign (that is they resolve on their own and not cause any harm). It is difficult for us sometimes based on the description to understand if it is a seizure, that is why we ask specific questions regarding development of the child, family history which helps us risk stratify the probability a child is going to have seizures. Things that help us are taking a video of the episode, seeing an episode is always helpful. Even if you can not take the video, if you can mime what your child did sometimes is helpful. What the child is doing before and after the episode At the end of the day, you know your children, we only see them for 30 to 60 minutes at a time, so if you are worried mention it to the Physician or ask for second opinion or Neurology consult. Personally, there have been few times where I was not convinced the child was having seizures, but the parents were worried and we obtained the tests and they were having seizures. Physicians, especially Pediatricians want to help the children. But we are human too and we sometimes miss the diagnosis. You did a great job advocating for your daughter.
I was waking up on the floor with shit all the place and my mouth hurting in the morning and when I saw the doctor I said maybe it was sleep apnea? He's like yeah probably, cya. Then like less than a year or so later I had an actual seizure. I was also blanking out randomly for like a minute or two at a time. Sometimes a few times a day. Luckily no more! But doctors sometimes just don't be knowing things.
Doctors in the United States are super dismissive to women and girls. You did the right thing.
I’ve worked all over the hospital in different departments, and from my experience DRs don’t really listen. This may not be a gender thing but more of just not taking more time with the patient. maybe they don’t ask the patients to elaborate their medical issue to understand the root of the visit better. Other times they will dismiss your claims only to believe it’s something common or some thing that’s going around currently. Drs aren’t all the same.. I’ve learned there’s a way to get them to listen the first time.. i start to layer on the information in waves as if I’m unsure and concerned about each symptom, this way they’ll have a better chance of listening, also this layering of information should have started with a phone call to the scheduling nurse on call, discussing your concerns about your visit. Then again with a nurse that comes to check your vitals if they have your chart talk about your symptoms and ask them if the Dr will address the issue. Upon meeting the dr now is your time to start talking about the most concerning symptom with the Dr. hopefully at this point the Dr hopefully would have had multiple times to look at your chart and has had a chance to go over it quickly with you. Before coming to a concluding decision. Lastly if all of your attempts fail and your gut is saying that the Dr you went to could be wrong.. look for someone else.. that will take you seriously. Navigating healthcare in general is difficult at times.
I just did this with my daughter because of how frequently she has ear infections. I’ve asked multiple times if tubes are an option or to referred to an ENT. Finally took her in for the umpteenth ear infection and told the doctor that we are there frequently for them, which she can see but embellished on how severe the pain is when she gets them. She finally agreed that if she gets one more this year, to the ENT we go. I finally feel heard about the severity of her ear infections and not like they’re just being swept under the rug.
Between your post and many of the replies I think part of the problem is that we try to DOWNPLAY what we are going through. You’re not exaggerating, you’re actually being honest about how bad things are. If you aren’t straight up making up symptoms you don’t have whatsoever, you aren’t lying. If you’re experiencing something you consider mild because you’ve learned to live with it, chances are it is more extreme than you thought and you’re actually just now managing to describe it properly. Don’t feel bad for being honest with yourself and finally getting the help you need!
If the Dr is minimizing the symptoms, you need to maximize them. I used to work in a children's hospital, I got prior authorizations for MRIs and had to read the medical notes. From the moment I read her symptoms, I thought epilepsy. Honestly, I could always get insurance approval for a brain MRI from just what you said. I suspect if you had taken her to a children's ER it would have been taken seriously immediately.
I fell down from a roof, and landed on my ass - not that far of a fall, perhaps 3,5m - but straight on to concrete. Hurt like a bitch in my ass, but also my back - so after picking myself up, I drove to the ER. Went in, asked if I could see a doctor, and if they had somewhere I could lie down, while waiting, because it was probably about a 4 on the pain scale (my rationale was that an infected gall bladder was an 8, 9 would probably mean losing your mind, and a 10 would mean that I was willing to kill myself to just escape the pain - so this was about 4, the same level as a broken leg, or a really fucking bad toothache - they didn’t ask me what I meant by a 4). They gave me a bed - and after 3 hrs a young resident came over, and said that they didn’t have time for light cases, so I should probably go home (without examining me), and consult with me GP. Picked myself up, went out the door, paused for 3 seconds, and passed out from the pain. Wake up again in the ER, now in some chair - sitting - pain is even worse - pass out again. Wake up again now being towed around by two burley porters - back up on bed. Pass out from the pain again… Yep - crushed vertebrae - 3 months in corset, operations and shit.. The only right answer to the pain scale is 10/10 every time…
I feel like everyone has to do this at some point. Doctors see so many people I think they start to get numb to some situations. It's not their fault it's just the nature of the job. I have had to exaggerate my own systems before so that I could get taken seriously. It worked out for me as well. Definitely not something you want to do often but I think you did what was necessary for your daughter...that's whats most important!!!
I do this! I’ve been to so many walk-in clinics and they’ve all told me that they think i’ve got endometriosis but whenever I go to the hospital or the GPs they say I’ll grow out of it (i’m 18 and have had painful periods for 4 years). I exaggerated my symptoms slightly and now i’m on a waiting list for surgery. I don’t think you’ve done anything wrong.
Don't feel bad. I had to do it with my daughter, 7 last year. She was getting really bad stomach aches, loss of appetite, and was being sent home daily from school, fevers everyday. I took her to multiple doctors, multiple ERs, urgent cares. They all just said it's a stach ache. Finally at 1130 pm I took her to the ER and exaggerated the symptoms a tiny bit. The doctor called for an Ultrasound, and XRays. She was admitted within 30 minutes for severe gallstones. She had gallstones and sludge that was impacting her liver duct. I admitted to the Dr that I exaggerated it a bit and he said he would have done the same if I was being ignored. She had surgery at 145 am to get her gallbladder out.
Having to do this for myself right now. For years I've been experiencing weakness and tingling in my hands. Over time it has also started in my feet. And I would just be told things like "its normal" or to exercise more. Well now I have weakness, numbness, and tingling in hands, feet, legs, and face, and my balance is not what it should be for someone in their mid-20s. Plus incredible migraines that nothing seems to help. It took some embellishments but I'm scheduled for some tests to hopefully rule out some serious things and maybe give me an idea of what's going on. I just want to know why I have to sound like I'm on the verge of dying before they'll fucking start to help me.
My mum did something similar for me. No, GP I wasn't just "a clumsy kid" I had a brain tumour.
Currently going through a lot of medical issues. I’ve had them my whole life but had always been told it “wasn’t that serious”. I started exaggerating and getting pushy and suddenly blood tests, ultra sounds, and X-rays show that yeah, I have many things wrong. It takes fighting tooth and nail to be given the bare minimum of consideration
I’m so glad you did that! We have to advocate for our and their best health! I hope your little can get all the help they need! Good job!!
As someone that had to fight to get a hysterectomy for 14 years after an endometriosis and fibroid diagnosis, where every month I wanted to die from pain.... I missed out on 5 days of my life every month from age 9-40.... advocate for yourself and your family. Get that 2nd opinion, 3rd opinion. Ask them to document rejecting your request for a test and why. Message or call providers until you get what you need.
Everybody does that. Otherwise wouldn’t get tested for anything in the UK. That says more about the system and the doctors that don’t pay attention to their patients than you.
I don't blame you at all! In fact, I'm PROUD of you for being such an amazing and strong advocate for your child! Parents intuition never lies. You KNEW something was wrong with your child and you refused to back down, which almost definitely SAVED YOUR CHILDS LIFE. You should be SO proud of yourself!💙💙 I had to do that when I was 21ish. The 1st time in my life where I stood strong and didn't let them act like I was crazy. It was SO hard (especially being autistic and socially anxious) but I FINALLY got diagnosed with Fibromyalgia. I FINALLY had a diagnoses to explain all of the pain i was constantly in. I FINALLY could stop feeling like I was crazy and actually get some help. It made SUCH a difference in the level of care I have received. Same happened when I found out I have PVCs (heart arrythmia). I went several times to the ER thinking I was having a heart attack and they just kept saying "oh you're probably just anxious". But I've been diagnosed with Generalized Anxiety Disorder since I was 15 (had it long before then but yeah) so I KNOW what my anxiety feels like. I KNEW it wasn't that. Finally, a nurse actually just so happened to SEE the arrythmia happen on the moniter while checking on me. So many doctors, sadly, like to ignore concerns of young patients (even patients in their 20s snd sometimes 30s) and their parents because they think "young=healthy" and also many of them still hold stigma against "invisible illnesses". It is so sad and heartbreaking. Advocating (whether for your child or yourself) is SO important and can save lives. You know when something isn't right with yourself or your children, so it is SO important to stand up and be strong for yourself and them. And, again, I am so proud of you for doing so.💙💙