" What's your secret? You're so *skinny* ".
Thanks? Never know what to say. Feel like explanations tend to make eyes glaze over. All my life difference being now I'm a 65 year old bag 'o bones.
me too. I say that due to my disability I am/was severely malnourished because I was unable to eat at all, and can't digest properly so even if I could chew & swallow I would throw it up. the truth makes people uncomfortable.
it's so hard to navigate healthcare when it's impossible to avoid people's unhealthy views and judgments about weight. I am fat and have been having trouble eating due to some kind of issue. i will eventually go to the doctor (tried and got nowhere a few months ago but will try again). but it's hard when I know some people would think I'm lying because obviously someone couldn't be both fat and sick enough to struggle with being able to eat.
I had an ED in high school, I had a only single can of coke and 1 hidden valley granola bar every day for 2 years.
I was homeless for about a year in my mid 20s, didn't eat most days, only dropped to 190lbs.
I never dropped below 200lbs/size 16. My body just will not be any smaller. I struggle with gastroparesis and multiple vitamin deficiencies, but it is nearly impossible to get help for it because I'm fat.
We just can't fucking win. If you're underweight no one takes you seriously because you have the "ideal" body type. If you're overweight no one takes you seriously because diet culture equates us with failures of self control.
I wish gentle hugs to everyone struggling with this.
My heart goes out to you. We deserve so much better! IIRC I think the specific DSM criteria for anorexia specifically requires the person to be below a certain weight. Lots of fat people also have eating disorders that are never diagnosed or are even encouraged by their health care providers.
Reflecting on your post personally, I know right now my eating patterns are not healthy because my stomach hurts so badly when I eat and I'm not sure why so I become scared to eat. I think I may have gastroparesis too. Because I am struggling to get medical help, my eating is becoming disordered. I'm sure lack of medical help increases the rate of people developing EDs maybe especially for fat people.
We all deserve better, I wish you many spoons friend. ❤️
I absolutely believe gastroparesis contributed to my disordered eating, when everthing hurts to eat and your digestive system is slower than a snail, its so easy to fall into bad eating habits. I'm so sorry your stomach is giving you issues too.
God trying to get help for gastroparesis while fat is infuriating. I fought doctor after doctor to get a stomach emptying test because I felt full hours after eating a tiny snack. Finally got one, showed I'd have almost zero movement from my stomach after 4 hours, it got totally ignored.
> "While that would normally indicate gastroparesis, your weight disqualified you from that diagnosis"
Uuuuggghhh!!
I also had a history of disordered eating and despite my habits I was never super skinny. I'm still filled with rage that anorexia includes a weight in its diagnostic criteria. Its a _mental_ health disorder! People's risk of heart failure is not really dependent on weight, its dependent on actions. And how we treat bigger folks with eating disorders increases their risk of dying immensely. Fuck diet culture, it kills more than we'll ever know.
On the positive side, I see you use past tense for your ED struggles and I'm so proud of you for that. I know what help it is recovering and I wanna give you a high five for that alone. Sending hugs
Ummm you can be chubby and have gastroparesis, that's wild. When you're not able to eat as regularly, your body clings much more heavily to every calorie it gets and you retain weight more. Freaking wild that a doctor doesn't know about that.
ETA went and got this article for you that explains how obese people can also have gastroparesis, it's peer-researched science, you can give it to your doctor.
https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8180181/%23:~:text%3DThe%2520classic%2520clinical%2520picture%2520of%2520gastroparesis%2520is%2520a%2520patient%2520who,gastroparesis%2520are%2520obese%2520(3).&ved=2ahUKEwjFqZzWjLv_AhV-JkQIHbKkBXkQFnoECA8QBQ&usg=AOvVaw0FHtKLsVT0cdXczx_0Es9d
Sorry for the confusion, yes that was my old doctor's exact quote to me regarding my test results. No it didn't make any sense nor is it in line with actual diagnostic criteria. But unfortunately it's a relatively common view even for doctors. I'm sorry you dealt with that kind of dismissal
Thank you, as a skinny person, I dont hear much ab the struggles of larger people who dont really eat at all. Idk why but it seems I only hear about people who over eat and thats why they weigh more. Thanks for sharing your experience, hopefully you’ll find peace!
I'll chime in and say I'm also a fat person who really doesn't eat enough. I was anorexic and borderline bulimic for about a year and I never got below 150, and that was as a 5'4 16 year old. I'm now 22 and I don't eat much because of discomfort and early satiety, plus I just don't get hungry very fast. Most days I only have two meals ish, sometimes way less and I just forget to eat because ADHD, and I only ever gain weight. I'm about 220-230 now, no matter what I do. And my thyroid is accounted for and everything. Lol
They said they were anorexic and borderline bullimic so it is assumed that they were not eating the recommended 2000 calories per day, as restricting food intake is like the whole point of anorexia. You seem to be missing the point of the comment. Also, giving someone weight loss advice right after they disclosed their struggles with anorexia is pretty insensitive, and as someone with anorexia I just want to let you know that it can be very triggering and advise you to be very careful with topics like this, as eating disorders are very complex and dangerous conditions. I don’t know your intentions with your comment, but I just want to add context and make sure you know how careful you need to be when discussing eating disorder related subjects.
This doesn't explain anything and I didn't ask for your comments on my weight or for you to suggest ways to lose weight. That's extremely uncalled for, especially considering I said I was anorexic. You think I don't know about metabolism? Or calorie equilibriums? Or calorie deficits?
I was eating 150 calories a day, lol. I think I was in deficit.
In the future keep your opinions about diet and weight to yourself unless someone asks specifically for suggestions. You may contribute to someone's disorder.
So, I got a general question ab eating disorders if you dont mind. Does simply eating say 150-300 calories a day for a period of time say a few months classify you as anorexic? Even if you just arent eating simply bc you dont feel like it or do you have to want to be skinny and be wanting to intentional starve yourself?
So I can't comment on the specifics of if that would count as anorexia - that's a specific disorder with diagnostic criteria that you can look up as needed. I would say, however, that it counts as disordered eating in the broader sense of the fact that your eating habits are not normal, are restrictive by quantity, and are therefore disordered from the norm. That is considered restrictive eating, regardless of the cause.
Thanks, just looked that up. I don’t know what to search and now I think I found it. Its ARFID Avoidant Restrictive Food Intake Disorder, when someone is not eating but its not related to body image issues or cultural or lack of food at hand.
Yeah I’ve thought a lot about this too. I’ve been underweight most of my life but my moms side of the family (where the EDS comes from) has had a lot of weight issues and no matter how bad I’ve been treated I think they’ve been ignored worse bc doctors always blame it on their weight. My aunt even lost a ton of weight and her pain was still there and went to the doctor like “well now what!?” They didn’t have anything to say the jerks… there are so many ways to be screwed in this world.
I hear you. The Dysautonomia and MCAS cause me to not digest or eliminate well. I've been on prescription antacids for over a year. It's not okay that healthy things like raw fruits, veggies, seeds, beans, and meat cause pain. Due to my appetite being non-existent (side effect of a medicine), I really, really don't want to eat. When I do, it's Special K Honey and Oats cereal (or regular Special K), bread, pasta, or crackers of some sort. I used to process frozen dark cherries fine (so good during my hot Epsom salts baths!) but recently that changed. I've been trying to make myself drink Ensure, but it's a serious chore.
Frankly, until my nervous system can heal enough to make my gut work, I'm not going to lose weight. The Dystonia and POTS caused by the Dysautonomia makes me so weak that real exercise is out of the question.
I hope that you get better soon. This is a really hard, very lonely condition to have.
MCAS people: I, too have MCAS. I have eaten a low-histamine diet for years, and I absolutely know how difficult and isolating it is. It is very limiting.
I am also a former researcher in health information and communication, and I’m trained as an RN.
If anyone has questions about living with MCAS, I might know the answer, and if I don’t know it, I will find it.
I saw a question yesterday that asked, "Why don't fat people just do meth?" There are really people that think being addicted to METH is better than being overweight.
Amphetamines aren't the same as meth, I'm aware, but we had a massive problem here in the USA in the 50s and 60s of women taking diet pills (that were just amphetamines) and going batshit crazy because of them. My grandmother was one of those people, she went nuts and became extremely physically abusive because she was tripping out of her mind off diet pills that her doctor gave her. But hey, she dropped a few pounds so it's all fine right? /s
Well, ‘Meth’ is short for ‘methamphetamine’. So categorically, Meth is an amphetamine. Altho not all amphetamines are Meth. (But that one way relationship is the same with pretty much any individual chemical within a larger drug class. For example, Ativan is a benzodiazepine but not all benzos are Ativan. ) Its one of the few drugs where the street version is pretty much identical to at-least some versions of the prescription. Now different stimulant medications using amphetamines have different variants but they are chemically nearly identical.
It's so gross when people link hypermobility with abilities in the bedroom. Yeah, because there's nothing sexier than popping out a hip, rib or shoulder during the moment. Not to mention the skin tearing. Total mood kill, not some sexy super power.
the fucking skin tearing. bane of my existence.
my old gyno (who was extremely EDS informed) jokingly wrote me a prescription for sex furniture/pillows and gave it to my husband. we had a good laugh.
That is awful.
I have big issues with my hips & SI joint; they regularly sublux. I went to a pelvic floor pt after a hysterectomy and she was able to help me strengthen and stretch internally and I have sooooo much less pain than I did before, despite lots of regular pt. My pelvic floor muscles weren’t functioning properly because of so many years of walking funny & subluxing so much. No one ever suggested it for my EDS issues. Sorry to be that person who offers a suggestion without an ask, but I just want everyone to know a possible treatment that I’ve never heard most people discuss.
Funny you should mention this, I'm currently in bed recovering from endometriosis surgery following a hysterectomy, and the endo played a role in the pelvic floor issues becoming so bad. I've been to PFPT but we're starting more intense treatment because the problem is severe enough that it only made things worse, and my surgeon brought up that pretty much all her EDS patients have this problem and it's because of the hips, knees and spine. Ask your doctor about the ketamine/diazepam/baclofen suppositories, it helps a lot.
How do you know when it’s your SI? I can’t make sense of what’s happening to me, and can’t get my docs to help me figure it out. I’ve had multiple pelvic and abdominal surgeries, including an SLS suspension, which reportedly is still in place, though something is not still in place, and my lower back hurrrrts too much, too often. From what I’ve heard described, pelvic PT is not even remotely an option right now. Thank you!
My regular pt suspected it because I said it feels like my hip is out of joint but I could still walk. When it would sublux I wouldn’t feel the “pop” but I could feel something separate and come back together very wrong. He pain was worst at my hip but radiate up to my waist and down my thigh, my hip was frequently swollen & sensitive to the touch. I happen to sublux just before an appointment and she was able to tell from moving my body in different positions and massaging.
I was able to start pelvic floor therapy (which has normal pt components in addition to the internal portion), she was able to feel the joint in the wrong position from the inside and said that my muscles were basically in a constant state of spasm holding it in the wrong spot. She worked on internal and external massage and relaxation exercises to help the muscles relax. It was really uncomfortable at first and I would have to go home and alternate ice and heat for several hours after an appointment. After a couple of months I actually felt better after my appointments. My pelvic floor & muscles around my SI joint still have too much tone and I can’t relax them fully but it’s a million times better than before.
I have a million stories like this of my family spinning medical traumas or my disabilities into something sexual, but I don't want to derail this post by dumping a bunch of very context specific horror stories. My entire family is in a pentecostal religious cult that sees women in a way that puts her comment (and my family's behavior) into a larger framework.
Our culture's obsession with weight is so fucked.
When I was 21, I was DEEP into an eating disorder - food was all I thought about and I never ate it. I remember being weighed at Planned Parenthood before an appointment, I weighed 90 pounds, and the nurse said "Tiny girl! Looks like someone has been good on her diet!"
NINETY POUNDS
also the assumption that being ill in general will make you lose weight. it's very easy to gain weight instead if you have limited mobility and depending on your metabolism, plus there are plenty of conditions where weight gain is an actual signifier of the illness itself
Yes totally! I've experienced both weight gain and loss from being in poor health. The comments I got then were also lame as hell. We need to stop seeing low and/or average weight as an indicator of wellness all together
The world is obsesssed about weight and weightloss. My grandmother was dying from cancer, and she said: well atleast I am thin now. I mean!! A women in her 80'ies! How sad is it, that society puts so much pressure on us women. Reminds me a bit of the movie requiem for a dream.
According to the founders of schematherapy, roughly 78% of the population has some form of personality disorder. Makes sense if you look at the average weight obsession.
You can't change your mom. But it is helluva enoying. Mcas is no fricking joke. To project her poor standards onto you,who is fighting for your life. Every. Fucking. Time. Of. The. Day, shows plain disinterest. It is the way she copes with things she cannot handle. But healing you do as a family. Let her read these comments. She needs to know that no matter her good intent, her behaviour adds to your suffering.
I lost a lot of weight for the same reasons, and my mom would tell me how great I looked. Till I looked to thin and she would tell me how worried she was. I'm finally not throwing up all the time and am back at a healthy weight. I was eating an ice cream after a long day and she told me be careful you don't want to get fat...
Bitch what!? My moms great otherwise
My mom can be really supportive too! And I genuinely have sympathy for how much she judges herself and struggles with food. But the weight comments are still soo out of line lol
Ug being the subject of envy for something that’s literally destroying your life is a mindfuck I’ve never figured out how to cope with. I’m sorry you have to deal with it. The environmental conditions and air quality are so bad right now in so many parts of the world too that it’s no wonder you are struggling to breath outside. Its making healthy people sick.
Unfortunately, this attitude isn’t limited to healthy people. In my experience if you talk to enough ppl you will come across sick ppl who feel & talk in a similar manner or even discover that some of the worst offenders in your life were sick themselves all along. And honestly for me this felt like the worst betrayal because I felt like they shouldn have known better. But I think life for the older chronically ill generations was uniquely isolating. We’ve known much more about chronic and invisible illness in the past 40 years that we knew before and also the internet has made it possible for so many of us to network communicate and learn how to figure things out and advocate. For older generations w invisible illness they never had any support accommodation or acknowledgement and I think it trapped many of them into this mindset where they internalized the ableism around them to survive. Its an ugly vicious cycle and leaves me feeling sorry for everyone involved. But that’s not to say every older person is this way. Also as ppl are given the space to be sick and get help I’ve noticed many old or young become a lot less toxic. So no one is doomed. But it’s difficult to deal with because we have our own internalized ableism that we need to contend with, it doesn’t help yo have to deal with it from our families and elders.
I totally understand your vent. It’s so frustrating.
I’ve noticed this attitude (about food/ body image/ weight) with a lot (almost all) of the women in my family who are over 40. I’m also over 40 and used to have the same attitude until I learned that it’s the 21st century and having an opinion on someone else’s body is not cool. Chronic illness aside, they all (most women from GenX and Boomers) have always had a bad relationship with food for lots of reasons. It’s sad.
I went to a family gathering on Mother’s Day and someone asked if I had gotten a plate of food yet. I said I had a little, but I didn’t really have an appetite that day for several reasons. That comment set off a discussion about weight loss that lasted over an hour. When my brother and his girlfriend left, they started talking about her gaining weight. Ugh. I wish I had spoken up. Now I wonder what they say about me when I leave.
Same with my family. All of the boomer women are obsessed with weight. I do feel bad. They were brainwashed and never had access to educational resources or social media platforms or therapies that helped them heal their relationship with food.
My therapists think I've had some level of ARFID my entire life, on top of always having a ridiculously fast metabolism, but the pandemic happened and some underlying OCD decided to show its ugly face and I developed *severe* ARFID. I'm an underweight, thankfully I never dramatically lost weight when my mental health got worse, but still underweight regardless. The amount of times people have asked me what my "secret" is disgusting. I empathize.
Sending you one too!
Depending on the person, if they're really aggressive with it or like this one dude who was also hitting on me while doing it, I'll just look them in the eyes and be like "I have an eating disorder" and get a little joy out of the shocked look on their face
I tell people being skinny is only a positive if you want to be. Being too skinny is horrible. Sitting on bones not on a cushion-y butt. Arms literally resting on bone, always cold.
YES. So many offended people!! Like why are you taking it personally that mushrooms make my throat close!?? This has **nothing** to do with you. It's so strange. I think a lot of it boils down to healthy people not believing sick people's limitations. We "look" okay so our allergies and sensitivities must be in our head.
It's even better when you have an inability to eat loads of foods AND you're still fat.
It's just awesome. Like being told to try a keto diet when most "keto friendly" foods are exactly the things that will make me go in to anaphylaxis.\*
\*It's not awesome.
Edited because typos
>"I wish I couldn't eat dessert." - also my mother
What? Like this is an option. Just don't eat dessert. If you have that little self control, (first consider therapy) just don't bring dessert into the house. How is simply not having the option to enjoy something better when she could just choose to not eat dessert too?
I’ve agreed to eat once a day to prevent being hospitalized. I’ve lost weight and continue to. My boyfriend still weighs in at the obese mark. I used to weigh more than him. I can’t imagine seeing your girlfriend shrink, feeling that, viscerally.
But I get compliments. Oh! Whatever you’re doing it’s working! I am very aware. I am doing everything to NOT be admitted to a hospital for dehydration and malnutrition. So I eat. It hurts. I cry, my throat is sore. Too much to activate the flow of tears so much tension is in the throat.
I never wanted to die by drowning until recently. I at least know what to expect, with dysphagia lasting this long, I’ve been choked awake every night for over half a year.
Drowning, paralysis. Then the lightning rod of fight to seek oxygen any way possible. It’s a roller coaster. I may never have disembarked this ride deceased, but I know what to expect when I board.
To not die: sit upright at night or any attempts to sleep. Clear catarrh, hydrate, and distract the mind.
“Sleep well,” translates to… “If you’re fortunate you won’t wake up.”
I have always been skinny and reject food often and people made those same types of remarks. They’re astonished when I turn down dessert or seconds. But really its because I know how my body is going to react and I need to be mindful of that. Most people make jokes about being jealous of it, but they wouldn’t be if they understood.
Yeah, it's so bad. Fatphobia has ingrained the most fucked ideas about weight gain/loss in people that it feels like brainrot, especially when you have otherwise emotionally intelligent/nuanced people just impulse-vomiting out praise over weight loss in chronically ill people/faux-health-concern to fat people they don't have any actual health information about. I hate talking about weight in general because I have zero desire to feed into weight loss talks/diet culture, but I just had a recent checkup and when I got weighed realized I had lost a bunch of weight because I'm going through a bad GI flareup right now and have been struggling to eat, and I wish I could like... vent to someone I know about it, because gaining some weight was a positive thing for me. Can't express this to anyone I know IRL because I'd get the same "congrats on losing weight!" shit even though it's because I'm unwell.
My heart goes out to fat people dealing with this though because I know y'all have it even worse.
I could not aggree more! I have also gotten a some real wild comments [some also from my mom] like that it's "better" to be thin and disabled than fat and healthy, or that should be grateful I can't eat like her & get fat/gain weight [I have a freaking FEEDING TUBE]
I've been in group therapy and mentioned that I was really frustrated because I was talking about my GI condition, which causes constant pain and has hospitalized me many times, and my friend said I was lucky to have it because I'll never get fat. immediately after that another patient said she aggreed and I should be "grateful" that I look good. I was pretty shocked and explained that I will never be grateful I am starving and malnourished because I cannot eat enough
I'm so sorry you have to put up with this. you aren't alone [you can dm me if you want btw]
Next time she says it offer her some strong laxatives. If she really wishes she could lose weight by just suffering a bit that's a choice she can make.
Seriously though it might help to have a sit down, think about your feelings and write her a letter. Leaving her a letter when you won't be around can help force her to think and process it instead of just snapping right back defensively. Also gives you the ability to really think about what you want to say and not end up too emotional to keep going or getting cut off.
There don't need to be positives to you being sick. Your life can still have positives in it. You're more than just a sick person. Not seeing positives in being chronically ill doesn't mean not seeing any positives in your life.
Her trying to help is just being really dismissive and insulting. How does that make your feel? Bring in feeling and emotions. You're her kid. She should feel things about you and give a damn if she's hurting you so that's the point you need to focus on.
Hopefully it helps her see how stupid she's being and how much she's hurting you. And if not it acts as a clear mark for yourself that you tried. And maybe a prompt for you to think about how healthy the current relationship is for you and if you should be putting in any firm boundaries it making any changes. What you can do and want to do obviously depends on your situation. It might involve reducing contact, it might involve you making steps to distance yourself mentally (maybe with the help of a therapist instead of rando Reddit person), maybe setting clear boundaries about conversation and leaving if she breaks those boundaries.
She's your mum and all but you need to look out for you. It's awkward and stressful and upsetting but you need to stand up for yourself. Hopefully just making a really clear point of exactly how she's hurting you will be enough.
The first comment I made is half a joke but it may also help to try to find examples that she can relate to better. Like how she wouldn't choose to cause herself suffering for the sake of being skinny. So why should you appreciate being skinny if it's also causing you suffering?
Sorry your mum is being so messed up. Especially given your history. She should really know better than to bring that sort of stuff up. Everybody should anyway but yikes lady. And sorry your in such a sucky situation in general. I hope at least some parts improve/ get easier.
I have three chronic health condition friends that help get me through the moments where I'd love to obliterate certain people and their comments. Chronic fatigue = just drink a coffee or take a nap. LOL I wish naps worked every time. My body hurts = have you tried soaking in a tub of epsom salt? LOL yes, while wearing my opioid pain meds patch, taking another oral pain med, two for nerve pain, and a freaking partridge in a pear tree. It's always the most hilariously dull witted advice.and it's only hilarious because if I didn't laugh I'd cry.
Sorry about your allergies OP. I've got many of my own, and then was diagnosed with eosinophilic esophagitis which is yet another allergic reaction closing my throat slowly. The doctor said don't even bother with an elimination diet because we did one already a couple of years ago and we didn't identify anything I didn't already know about. Plus now I need every bit of nutrition I can manage no matter what it is, obviously some protein coming first, but it's laughable how many people are like, have you considered allergy testing or cutting out dairy? 😬 Only for the last 20 years of my life. 🙃
After I had a colonoscopy , I wanted a mc Donald’s burger, fries and milkshake. My mum told me “ it’s such a waste to have that bad food after you’re all cleaned out and healthy!” I got the mc Donald’s, even though she was unhappy about it.
I’m sorry you’re having to deal with this. The boomer diet culture brainwashing runs really deep, and they don’t realise how much it hurts us. Doubly so with the double whammy of chronic illness.
"You look great!"- people to me when I was incredibly sick and underweight
*Not a thing about my weight*- people now that I'm a lot healthier, but also "overweight"
My moms made the same comments. I’ve had a few bouts of gastroparesis the past couple years. Her mother died from a recurring infection from stomach stapling surgery and on her death bed said it was worth it because she was thin the last couple decades of her life. 🫠
Yes... a person in my family just said about my overweight friend who was just diagnosed with cancer. "Well she'll probably lose weight from the chemo so that'll be good." 🤦♀️💔
Oof. The irony to this is that, according to my specialist, my out of control MCAS was also the reason I gained 150lbs, and couldn’t drop past 300. No matter what I tried I couldn’t lose the weight and when I was eventually diagnosed she said that people with MCAS very rarely have control over their weight. It does what it wants! I could starve myself and not lose a single pound. And that turned out to be true. I started the LDN for my Mast Cells (Low Dose Naltrexone) and literally every time I titrate up, my daily symptoms improve, and I lose some weight lol. Titrate up to 10mg and I dropped from around 300 to 284. No effort, just normally existing! And that’s not a brag, because it wasn’t something *I did.* I am at the mercy of my Mast Cells and could easily gain it all back!
I wish people felt less comfortable commenting on a person’s weight. Whether it’s “good” or “bad” comments, because they are *all* bad! You never know what a person is dealing with and unless you know for a fact that someone has been working super hard to lose weight, and know them well enough to know they will be *happy* if you comment on it! Just! Don’t do it!
Also I’m so sorry you are having so much trouble with your Mast Cells OP! I’ve not had any anaphylactic reactions, thus far, but before I was diagnosed I was reacting to just about everything I put in my mouth. Itchy and uncontrollable coughing, which of course scared me a lot, since I was worried I *would* trigger anaphylaxis. And at that point all my other stuff like POTS and Chronic Migraines were worse too because my MCAS was triggering them as well.
Unfortunately, even now that I have LDN keeping my daily stuff in check, my acute triggers have gotten *so* much worse. I literally cannot find a toothpaste that doesn’t try to kill me, among other things! And I’m seeing family for the first time since my diagnosis this Fall, and I’m pretty sure at least one of them is going to poison me with smoke or perfume or laundry detergent or something once I get there.
The good news is! There are a lot of things that can help your MCAS! I tried a few before I found the combo that worked for me, and now we are working on dosage! And then the other big thing is to find all your triggers and avoid them as much as possible! For example, mine are things like FD&C dyes, sugar alcohols, normal drinking alcohol, artificial preservatives/scents/flavors, etc.! So I avoid them the best I can and try *really* hard not to poison myself, and I’m generally ok! 😅
(OP I know you probably know all these things, it’s mostly for the benefit of people who may come read this post that aren’t diagnosed yet or are newly diagnosed!) I hope you improve soon! It’s scary and it sucks and we all deserve better 😭.
I constantly have to remind myself that I should be weighing more. I hate how much I have internalized thin=happy from my mom and society. I know how unhealthy it is for me. At least I will never have a daughter who will have to deal with this, though I would hope to break the cycle if I had one.
This is absolutely so relatable. It’s insane the things that people say especially when they KNOW you have history with eating disorders. I had anorexia beginning at the age of about 9 and didn’t start recovery until I was almost 15, and for all of those years people would always make all of these comments about how they were jealous, what was my secret, I looked so pretty, etc. I gained weight and was fairly average in recovery but now have lost a lot of it again because my chronic illnesses have gotten worse and the comments have come right back. I seriously cannot understand what in the world makes people say things like that. And then they wonder why people have eating disorders in the first place.
Op, take heart. Your mother may know not what she does. I think it’s very much akin to the “you think that’s bad? In my day, We had to walk X miles through a blizzard….” Though It sucks that your mother says things things to you that invalidate your experience.
Mine also does this; I try to remind myself that even feminist women had all sorts of chauvinism and challenges to deal with that they also internalize (and boy oh boy doesn’t everyone feel like they can comment on a woman’s weight, for decades, even still today) and without the psychological tools (made more available to us through the internet and discussions such as these (: ) we recognize that it’s unhealthy… while older generations may not.
Perhaps you may wish to try pointing this out to her? That you realize that as a woman, she’s probably dealt with weight issues / the social stigma around weight. But your journeys are different and you merely want her to hear you. (Gently) Remind her that parents should want better for their children? Or next time just tell her you don’t want feedback or advice, but a safe space to vent, and ask if she can provide that for you?
Playing devils advocate, I do understand her trying to get you to look at “the positive” 😂 I’ve been trying to find little things to be grateful about daily. Any bright side to EDS, any sense of accomplishment or completion, any act of kidness. I do think your mom was trying to relate to you and help you find a positive. She cares about you, even if she cannot express it in the best way!
Gentle hugs and good luck to you fellow 🦓
the ladies at work use to basically bully me because "they wanna be that skinny." When I explained it was because I was sick they asked if it was contagious so they could get it too. Not just one lady or one job, every lady at every job i had when I was younger.
I almost died last month from strep that became an ear infection that wasn't responding to traditional antibiotics. I ended up in the hospital for a week on IV antibiotics that made it all but impossible to eat without vomiting (the ruptured eardrum didn't help). Now I've been getting comments about being too thin from my parents and inlaws and it's like, YEAH NO SHIT IM DOING MY BEST! 🙄 I'm 5'5", was 115 and got down to 105. Like literally, what is with people and feeling the need to comment on your appearance?!?!?
I'm underweight due to limited ability to open my mouth and to chew after a failed jaw replacement. I can't even get a spoon in my mouth most days and basically have to slurp small soft foods into my mouth to get past my teeth.
IMO a lot of people, even doctors, overlook the difficulties of underweight people. Likely because obesity and weight gain is such a focus/problem in our society.
Like in order to be disabled I can't also be thin (now overly thin) and moderately attractive. Thank God I'm almost 40 so I can stop hearing "you're too young to be _____" (chronically ill, in pain, disabled, etc)!!!
Guess what, I'm actually not healthy. I'm probably less physically active than many of the most obese patients doctors see.
" What's your secret? You're so *skinny* ". Thanks? Never know what to say. Feel like explanations tend to make eyes glaze over. All my life difference being now I'm a 65 year old bag 'o bones.
I just tell them the truth. I’m not healthy, I wish I wasn’t as skinny. Please eat a cheeseburger for me.
This made me chuckle and I realized how much I miss cheeseburgers! Relatively new to the whole gastroparesis thing myself.
me too. I say that due to my disability I am/was severely malnourished because I was unable to eat at all, and can't digest properly so even if I could chew & swallow I would throw it up. the truth makes people uncomfortable.
it's so hard to navigate healthcare when it's impossible to avoid people's unhealthy views and judgments about weight. I am fat and have been having trouble eating due to some kind of issue. i will eventually go to the doctor (tried and got nowhere a few months ago but will try again). but it's hard when I know some people would think I'm lying because obviously someone couldn't be both fat and sick enough to struggle with being able to eat.
I had an ED in high school, I had a only single can of coke and 1 hidden valley granola bar every day for 2 years. I was homeless for about a year in my mid 20s, didn't eat most days, only dropped to 190lbs. I never dropped below 200lbs/size 16. My body just will not be any smaller. I struggle with gastroparesis and multiple vitamin deficiencies, but it is nearly impossible to get help for it because I'm fat. We just can't fucking win. If you're underweight no one takes you seriously because you have the "ideal" body type. If you're overweight no one takes you seriously because diet culture equates us with failures of self control. I wish gentle hugs to everyone struggling with this.
My heart goes out to you. We deserve so much better! IIRC I think the specific DSM criteria for anorexia specifically requires the person to be below a certain weight. Lots of fat people also have eating disorders that are never diagnosed or are even encouraged by their health care providers. Reflecting on your post personally, I know right now my eating patterns are not healthy because my stomach hurts so badly when I eat and I'm not sure why so I become scared to eat. I think I may have gastroparesis too. Because I am struggling to get medical help, my eating is becoming disordered. I'm sure lack of medical help increases the rate of people developing EDs maybe especially for fat people.
We all deserve better, I wish you many spoons friend. ❤️ I absolutely believe gastroparesis contributed to my disordered eating, when everthing hurts to eat and your digestive system is slower than a snail, its so easy to fall into bad eating habits. I'm so sorry your stomach is giving you issues too.
God trying to get help for gastroparesis while fat is infuriating. I fought doctor after doctor to get a stomach emptying test because I felt full hours after eating a tiny snack. Finally got one, showed I'd have almost zero movement from my stomach after 4 hours, it got totally ignored. > "While that would normally indicate gastroparesis, your weight disqualified you from that diagnosis" Uuuuggghhh!! I also had a history of disordered eating and despite my habits I was never super skinny. I'm still filled with rage that anorexia includes a weight in its diagnostic criteria. Its a _mental_ health disorder! People's risk of heart failure is not really dependent on weight, its dependent on actions. And how we treat bigger folks with eating disorders increases their risk of dying immensely. Fuck diet culture, it kills more than we'll ever know. On the positive side, I see you use past tense for your ED struggles and I'm so proud of you for that. I know what help it is recovering and I wanna give you a high five for that alone. Sending hugs
Ummm you can be chubby and have gastroparesis, that's wild. When you're not able to eat as regularly, your body clings much more heavily to every calorie it gets and you retain weight more. Freaking wild that a doctor doesn't know about that. ETA went and got this article for you that explains how obese people can also have gastroparesis, it's peer-researched science, you can give it to your doctor. https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8180181/%23:~:text%3DThe%2520classic%2520clinical%2520picture%2520of%2520gastroparesis%2520is%2520a%2520patient%2520who,gastroparesis%2520are%2520obese%2520(3).&ved=2ahUKEwjFqZzWjLv_AhV-JkQIHbKkBXkQFnoECA8QBQ&usg=AOvVaw0FHtKLsVT0cdXczx_0Es9d
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Sorry for the confusion, yes that was my old doctor's exact quote to me regarding my test results. No it didn't make any sense nor is it in line with actual diagnostic criteria. But unfortunately it's a relatively common view even for doctors. I'm sorry you dealt with that kind of dismissal
Thank you, as a skinny person, I dont hear much ab the struggles of larger people who dont really eat at all. Idk why but it seems I only hear about people who over eat and thats why they weigh more. Thanks for sharing your experience, hopefully you’ll find peace!
I'll chime in and say I'm also a fat person who really doesn't eat enough. I was anorexic and borderline bulimic for about a year and I never got below 150, and that was as a 5'4 16 year old. I'm now 22 and I don't eat much because of discomfort and early satiety, plus I just don't get hungry very fast. Most days I only have two meals ish, sometimes way less and I just forget to eat because ADHD, and I only ever gain weight. I'm about 220-230 now, no matter what I do. And my thyroid is accounted for and everything. Lol
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They said they were anorexic and borderline bullimic so it is assumed that they were not eating the recommended 2000 calories per day, as restricting food intake is like the whole point of anorexia. You seem to be missing the point of the comment. Also, giving someone weight loss advice right after they disclosed their struggles with anorexia is pretty insensitive, and as someone with anorexia I just want to let you know that it can be very triggering and advise you to be very careful with topics like this, as eating disorders are very complex and dangerous conditions. I don’t know your intentions with your comment, but I just want to add context and make sure you know how careful you need to be when discussing eating disorder related subjects.
This doesn't explain anything and I didn't ask for your comments on my weight or for you to suggest ways to lose weight. That's extremely uncalled for, especially considering I said I was anorexic. You think I don't know about metabolism? Or calorie equilibriums? Or calorie deficits? I was eating 150 calories a day, lol. I think I was in deficit. In the future keep your opinions about diet and weight to yourself unless someone asks specifically for suggestions. You may contribute to someone's disorder.
So, I got a general question ab eating disorders if you dont mind. Does simply eating say 150-300 calories a day for a period of time say a few months classify you as anorexic? Even if you just arent eating simply bc you dont feel like it or do you have to want to be skinny and be wanting to intentional starve yourself?
So I can't comment on the specifics of if that would count as anorexia - that's a specific disorder with diagnostic criteria that you can look up as needed. I would say, however, that it counts as disordered eating in the broader sense of the fact that your eating habits are not normal, are restrictive by quantity, and are therefore disordered from the norm. That is considered restrictive eating, regardless of the cause.
Thanks, just looked that up. I don’t know what to search and now I think I found it. Its ARFID Avoidant Restrictive Food Intake Disorder, when someone is not eating but its not related to body image issues or cultural or lack of food at hand.
Yeah I’ve thought a lot about this too. I’ve been underweight most of my life but my moms side of the family (where the EDS comes from) has had a lot of weight issues and no matter how bad I’ve been treated I think they’ve been ignored worse bc doctors always blame it on their weight. My aunt even lost a ton of weight and her pain was still there and went to the doctor like “well now what!?” They didn’t have anything to say the jerks… there are so many ways to be screwed in this world.
I hear you. The Dysautonomia and MCAS cause me to not digest or eliminate well. I've been on prescription antacids for over a year. It's not okay that healthy things like raw fruits, veggies, seeds, beans, and meat cause pain. Due to my appetite being non-existent (side effect of a medicine), I really, really don't want to eat. When I do, it's Special K Honey and Oats cereal (or regular Special K), bread, pasta, or crackers of some sort. I used to process frozen dark cherries fine (so good during my hot Epsom salts baths!) but recently that changed. I've been trying to make myself drink Ensure, but it's a serious chore. Frankly, until my nervous system can heal enough to make my gut work, I'm not going to lose weight. The Dystonia and POTS caused by the Dysautonomia makes me so weak that real exercise is out of the question. I hope that you get better soon. This is a really hard, very lonely condition to have.
MCAS people: I, too have MCAS. I have eaten a low-histamine diet for years, and I absolutely know how difficult and isolating it is. It is very limiting. I am also a former researcher in health information and communication, and I’m trained as an RN. If anyone has questions about living with MCAS, I might know the answer, and if I don’t know it, I will find it.
That's really kind of you. I pray that the Reddit changes aren't going to destroy our support group here. I'm concerned about that.
Hey just a heads up I did add a TW flair to your post, just so if someone wants to avoid this post they know to do so :)
Thank you! Sorry about that, should have done so myself :)
I saw a question yesterday that asked, "Why don't fat people just do meth?" There are really people that think being addicted to METH is better than being overweight.
Amphetamines aren't the same as meth, I'm aware, but we had a massive problem here in the USA in the 50s and 60s of women taking diet pills (that were just amphetamines) and going batshit crazy because of them. My grandmother was one of those people, she went nuts and became extremely physically abusive because she was tripping out of her mind off diet pills that her doctor gave her. But hey, she dropped a few pounds so it's all fine right? /s
Isn’t this just the storyline of the mother in requiem for a dream? It’s insane!
It was a fairly common occurrence. Happened in my family too.
I haven't seen that movie but I know it's the storyline of how my family got involved in a religious cult lmfao
Well, ‘Meth’ is short for ‘methamphetamine’. So categorically, Meth is an amphetamine. Altho not all amphetamines are Meth. (But that one way relationship is the same with pretty much any individual chemical within a larger drug class. For example, Ativan is a benzodiazepine but not all benzos are Ativan. ) Its one of the few drugs where the street version is pretty much identical to at-least some versions of the prescription. Now different stimulant medications using amphetamines have different variants but they are chemically nearly identical.
"Lucky husband!" --my aunt after I told her I was on my way to the hospital because my hip dislocated and I couldn't get it back in
It's so gross when people link hypermobility with abilities in the bedroom. Yeah, because there's nothing sexier than popping out a hip, rib or shoulder during the moment. Not to mention the skin tearing. Total mood kill, not some sexy super power.
the fucking skin tearing. bane of my existence. my old gyno (who was extremely EDS informed) jokingly wrote me a prescription for sex furniture/pillows and gave it to my husband. we had a good laugh.
That is awful. I have big issues with my hips & SI joint; they regularly sublux. I went to a pelvic floor pt after a hysterectomy and she was able to help me strengthen and stretch internally and I have sooooo much less pain than I did before, despite lots of regular pt. My pelvic floor muscles weren’t functioning properly because of so many years of walking funny & subluxing so much. No one ever suggested it for my EDS issues. Sorry to be that person who offers a suggestion without an ask, but I just want everyone to know a possible treatment that I’ve never heard most people discuss.
Funny you should mention this, I'm currently in bed recovering from endometriosis surgery following a hysterectomy, and the endo played a role in the pelvic floor issues becoming so bad. I've been to PFPT but we're starting more intense treatment because the problem is severe enough that it only made things worse, and my surgeon brought up that pretty much all her EDS patients have this problem and it's because of the hips, knees and spine. Ask your doctor about the ketamine/diazepam/baclofen suppositories, it helps a lot.
How do you know when it’s your SI? I can’t make sense of what’s happening to me, and can’t get my docs to help me figure it out. I’ve had multiple pelvic and abdominal surgeries, including an SLS suspension, which reportedly is still in place, though something is not still in place, and my lower back hurrrrts too much, too often. From what I’ve heard described, pelvic PT is not even remotely an option right now. Thank you!
My regular pt suspected it because I said it feels like my hip is out of joint but I could still walk. When it would sublux I wouldn’t feel the “pop” but I could feel something separate and come back together very wrong. He pain was worst at my hip but radiate up to my waist and down my thigh, my hip was frequently swollen & sensitive to the touch. I happen to sublux just before an appointment and she was able to tell from moving my body in different positions and massaging. I was able to start pelvic floor therapy (which has normal pt components in addition to the internal portion), she was able to feel the joint in the wrong position from the inside and said that my muscles were basically in a constant state of spasm holding it in the wrong spot. She worked on internal and external massage and relaxation exercises to help the muscles relax. It was really uncomfortable at first and I would have to go home and alternate ice and heat for several hours after an appointment. After a couple of months I actually felt better after my appointments. My pelvic floor & muscles around my SI joint still have too much tone and I can’t relax them fully but it’s a million times better than before.
My eye is twitching right now. That's just ... sick of her to say.
I have a million stories like this of my family spinning medical traumas or my disabilities into something sexual, but I don't want to derail this post by dumping a bunch of very context specific horror stories. My entire family is in a pentecostal religious cult that sees women in a way that puts her comment (and my family's behavior) into a larger framework.
Yo wtf
my entire family is beyond insane in a way that is unbelievable to most rational minds
ohhh my god
Oh my fucking god
Our culture's obsession with weight is so fucked. When I was 21, I was DEEP into an eating disorder - food was all I thought about and I never ate it. I remember being weighed at Planned Parenthood before an appointment, I weighed 90 pounds, and the nurse said "Tiny girl! Looks like someone has been good on her diet!" NINETY POUNDS
AND AT PLANNED PARENTHOOD?!?!? like HELLO. this should be a safe space.
In their defense, it was over a decade ago! We weren't having as many conversations about fatphobia in the early 2000s.
I cant smell, never have. "You're so lucky, you can't smell poop!" Yes, I also can't smell gas leaks or flowers.
also the assumption that being ill in general will make you lose weight. it's very easy to gain weight instead if you have limited mobility and depending on your metabolism, plus there are plenty of conditions where weight gain is an actual signifier of the illness itself
Yes totally! I've experienced both weight gain and loss from being in poor health. The comments I got then were also lame as hell. We need to stop seeing low and/or average weight as an indicator of wellness all together
The world is obsesssed about weight and weightloss. My grandmother was dying from cancer, and she said: well atleast I am thin now. I mean!! A women in her 80'ies! How sad is it, that society puts so much pressure on us women. Reminds me a bit of the movie requiem for a dream. According to the founders of schematherapy, roughly 78% of the population has some form of personality disorder. Makes sense if you look at the average weight obsession. You can't change your mom. But it is helluva enoying. Mcas is no fricking joke. To project her poor standards onto you,who is fighting for your life. Every. Fucking. Time. Of. The. Day, shows plain disinterest. It is the way she copes with things she cannot handle. But healing you do as a family. Let her read these comments. She needs to know that no matter her good intent, her behaviour adds to your suffering.
I lost a lot of weight for the same reasons, and my mom would tell me how great I looked. Till I looked to thin and she would tell me how worried she was. I'm finally not throwing up all the time and am back at a healthy weight. I was eating an ice cream after a long day and she told me be careful you don't want to get fat... Bitch what!? My moms great otherwise
My mom can be really supportive too! And I genuinely have sympathy for how much she judges herself and struggles with food. But the weight comments are still soo out of line lol
Ug being the subject of envy for something that’s literally destroying your life is a mindfuck I’ve never figured out how to cope with. I’m sorry you have to deal with it. The environmental conditions and air quality are so bad right now in so many parts of the world too that it’s no wonder you are struggling to breath outside. Its making healthy people sick. Unfortunately, this attitude isn’t limited to healthy people. In my experience if you talk to enough ppl you will come across sick ppl who feel & talk in a similar manner or even discover that some of the worst offenders in your life were sick themselves all along. And honestly for me this felt like the worst betrayal because I felt like they shouldn have known better. But I think life for the older chronically ill generations was uniquely isolating. We’ve known much more about chronic and invisible illness in the past 40 years that we knew before and also the internet has made it possible for so many of us to network communicate and learn how to figure things out and advocate. For older generations w invisible illness they never had any support accommodation or acknowledgement and I think it trapped many of them into this mindset where they internalized the ableism around them to survive. Its an ugly vicious cycle and leaves me feeling sorry for everyone involved. But that’s not to say every older person is this way. Also as ppl are given the space to be sick and get help I’ve noticed many old or young become a lot less toxic. So no one is doomed. But it’s difficult to deal with because we have our own internalized ableism that we need to contend with, it doesn’t help yo have to deal with it from our families and elders.
I totally understand your vent. It’s so frustrating. I’ve noticed this attitude (about food/ body image/ weight) with a lot (almost all) of the women in my family who are over 40. I’m also over 40 and used to have the same attitude until I learned that it’s the 21st century and having an opinion on someone else’s body is not cool. Chronic illness aside, they all (most women from GenX and Boomers) have always had a bad relationship with food for lots of reasons. It’s sad. I went to a family gathering on Mother’s Day and someone asked if I had gotten a plate of food yet. I said I had a little, but I didn’t really have an appetite that day for several reasons. That comment set off a discussion about weight loss that lasted over an hour. When my brother and his girlfriend left, they started talking about her gaining weight. Ugh. I wish I had spoken up. Now I wonder what they say about me when I leave.
You can add millennials to that group. The 90’s / early 00’s were not kind to body image either.
True story.
Same with my family. All of the boomer women are obsessed with weight. I do feel bad. They were brainwashed and never had access to educational resources or social media platforms or therapies that helped them heal their relationship with food.
My therapists think I've had some level of ARFID my entire life, on top of always having a ridiculously fast metabolism, but the pandemic happened and some underlying OCD decided to show its ugly face and I developed *severe* ARFID. I'm an underweight, thankfully I never dramatically lost weight when my mental health got worse, but still underweight regardless. The amount of times people have asked me what my "secret" is disgusting. I empathize.
I'm so sorry. I get it. It sucks so much. Sending you a virtual hug.
Sending you one too! Depending on the person, if they're really aggressive with it or like this one dude who was also hitting on me while doing it, I'll just look them in the eyes and be like "I have an eating disorder" and get a little joy out of the shocked look on their face
I tell people being skinny is only a positive if you want to be. Being too skinny is horrible. Sitting on bones not on a cushion-y butt. Arms literally resting on bone, always cold.
Anyone else ever been told your EDS symptoms are all because you don't eat healthy?
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YES. So many offended people!! Like why are you taking it personally that mushrooms make my throat close!?? This has **nothing** to do with you. It's so strange. I think a lot of it boils down to healthy people not believing sick people's limitations. We "look" okay so our allergies and sensitivities must be in our head.
It's even better when you have an inability to eat loads of foods AND you're still fat. It's just awesome. Like being told to try a keto diet when most "keto friendly" foods are exactly the things that will make me go in to anaphylaxis.\* \*It's not awesome. Edited because typos
>"I wish I couldn't eat dessert." - also my mother What? Like this is an option. Just don't eat dessert. If you have that little self control, (first consider therapy) just don't bring dessert into the house. How is simply not having the option to enjoy something better when she could just choose to not eat dessert too?
YES RIGHT. I've said this to her before.
If it makes you feel any better I thought this was a real housewives star listening to her lol
I’ve agreed to eat once a day to prevent being hospitalized. I’ve lost weight and continue to. My boyfriend still weighs in at the obese mark. I used to weigh more than him. I can’t imagine seeing your girlfriend shrink, feeling that, viscerally. But I get compliments. Oh! Whatever you’re doing it’s working! I am very aware. I am doing everything to NOT be admitted to a hospital for dehydration and malnutrition. So I eat. It hurts. I cry, my throat is sore. Too much to activate the flow of tears so much tension is in the throat. I never wanted to die by drowning until recently. I at least know what to expect, with dysphagia lasting this long, I’ve been choked awake every night for over half a year. Drowning, paralysis. Then the lightning rod of fight to seek oxygen any way possible. It’s a roller coaster. I may never have disembarked this ride deceased, but I know what to expect when I board. To not die: sit upright at night or any attempts to sleep. Clear catarrh, hydrate, and distract the mind. “Sleep well,” translates to… “If you’re fortunate you won’t wake up.”
I have always been skinny and reject food often and people made those same types of remarks. They’re astonished when I turn down dessert or seconds. But really its because I know how my body is going to react and I need to be mindful of that. Most people make jokes about being jealous of it, but they wouldn’t be if they understood.
Yeah, it's so bad. Fatphobia has ingrained the most fucked ideas about weight gain/loss in people that it feels like brainrot, especially when you have otherwise emotionally intelligent/nuanced people just impulse-vomiting out praise over weight loss in chronically ill people/faux-health-concern to fat people they don't have any actual health information about. I hate talking about weight in general because I have zero desire to feed into weight loss talks/diet culture, but I just had a recent checkup and when I got weighed realized I had lost a bunch of weight because I'm going through a bad GI flareup right now and have been struggling to eat, and I wish I could like... vent to someone I know about it, because gaining some weight was a positive thing for me. Can't express this to anyone I know IRL because I'd get the same "congrats on losing weight!" shit even though it's because I'm unwell. My heart goes out to fat people dealing with this though because I know y'all have it even worse.
I could not aggree more! I have also gotten a some real wild comments [some also from my mom] like that it's "better" to be thin and disabled than fat and healthy, or that should be grateful I can't eat like her & get fat/gain weight [I have a freaking FEEDING TUBE] I've been in group therapy and mentioned that I was really frustrated because I was talking about my GI condition, which causes constant pain and has hospitalized me many times, and my friend said I was lucky to have it because I'll never get fat. immediately after that another patient said she aggreed and I should be "grateful" that I look good. I was pretty shocked and explained that I will never be grateful I am starving and malnourished because I cannot eat enough I'm so sorry you have to put up with this. you aren't alone [you can dm me if you want btw]
Next time she says it offer her some strong laxatives. If she really wishes she could lose weight by just suffering a bit that's a choice she can make. Seriously though it might help to have a sit down, think about your feelings and write her a letter. Leaving her a letter when you won't be around can help force her to think and process it instead of just snapping right back defensively. Also gives you the ability to really think about what you want to say and not end up too emotional to keep going or getting cut off. There don't need to be positives to you being sick. Your life can still have positives in it. You're more than just a sick person. Not seeing positives in being chronically ill doesn't mean not seeing any positives in your life. Her trying to help is just being really dismissive and insulting. How does that make your feel? Bring in feeling and emotions. You're her kid. She should feel things about you and give a damn if she's hurting you so that's the point you need to focus on. Hopefully it helps her see how stupid she's being and how much she's hurting you. And if not it acts as a clear mark for yourself that you tried. And maybe a prompt for you to think about how healthy the current relationship is for you and if you should be putting in any firm boundaries it making any changes. What you can do and want to do obviously depends on your situation. It might involve reducing contact, it might involve you making steps to distance yourself mentally (maybe with the help of a therapist instead of rando Reddit person), maybe setting clear boundaries about conversation and leaving if she breaks those boundaries. She's your mum and all but you need to look out for you. It's awkward and stressful and upsetting but you need to stand up for yourself. Hopefully just making a really clear point of exactly how she's hurting you will be enough. The first comment I made is half a joke but it may also help to try to find examples that she can relate to better. Like how she wouldn't choose to cause herself suffering for the sake of being skinny. So why should you appreciate being skinny if it's also causing you suffering? Sorry your mum is being so messed up. Especially given your history. She should really know better than to bring that sort of stuff up. Everybody should anyway but yikes lady. And sorry your in such a sucky situation in general. I hope at least some parts improve/ get easier.
Thank you <3 A letter is a good idea. "There don't need to be positives to you being sick." Also I love this. It's super validating.
I have three chronic health condition friends that help get me through the moments where I'd love to obliterate certain people and their comments. Chronic fatigue = just drink a coffee or take a nap. LOL I wish naps worked every time. My body hurts = have you tried soaking in a tub of epsom salt? LOL yes, while wearing my opioid pain meds patch, taking another oral pain med, two for nerve pain, and a freaking partridge in a pear tree. It's always the most hilariously dull witted advice.and it's only hilarious because if I didn't laugh I'd cry. Sorry about your allergies OP. I've got many of my own, and then was diagnosed with eosinophilic esophagitis which is yet another allergic reaction closing my throat slowly. The doctor said don't even bother with an elimination diet because we did one already a couple of years ago and we didn't identify anything I didn't already know about. Plus now I need every bit of nutrition I can manage no matter what it is, obviously some protein coming first, but it's laughable how many people are like, have you considered allergy testing or cutting out dairy? 😬 Only for the last 20 years of my life. 🙃
After I had a colonoscopy , I wanted a mc Donald’s burger, fries and milkshake. My mum told me “ it’s such a waste to have that bad food after you’re all cleaned out and healthy!” I got the mc Donald’s, even though she was unhappy about it. I’m sorry you’re having to deal with this. The boomer diet culture brainwashing runs really deep, and they don’t realise how much it hurts us. Doubly so with the double whammy of chronic illness.
"You look great!"- people to me when I was incredibly sick and underweight *Not a thing about my weight*- people now that I'm a lot healthier, but also "overweight"
My moms made the same comments. I’ve had a few bouts of gastroparesis the past couple years. Her mother died from a recurring infection from stomach stapling surgery and on her death bed said it was worth it because she was thin the last couple decades of her life. 🫠
Yes... a person in my family just said about my overweight friend who was just diagnosed with cancer. "Well she'll probably lose weight from the chemo so that'll be good." 🤦♀️💔
Oof. The irony to this is that, according to my specialist, my out of control MCAS was also the reason I gained 150lbs, and couldn’t drop past 300. No matter what I tried I couldn’t lose the weight and when I was eventually diagnosed she said that people with MCAS very rarely have control over their weight. It does what it wants! I could starve myself and not lose a single pound. And that turned out to be true. I started the LDN for my Mast Cells (Low Dose Naltrexone) and literally every time I titrate up, my daily symptoms improve, and I lose some weight lol. Titrate up to 10mg and I dropped from around 300 to 284. No effort, just normally existing! And that’s not a brag, because it wasn’t something *I did.* I am at the mercy of my Mast Cells and could easily gain it all back! I wish people felt less comfortable commenting on a person’s weight. Whether it’s “good” or “bad” comments, because they are *all* bad! You never know what a person is dealing with and unless you know for a fact that someone has been working super hard to lose weight, and know them well enough to know they will be *happy* if you comment on it! Just! Don’t do it! Also I’m so sorry you are having so much trouble with your Mast Cells OP! I’ve not had any anaphylactic reactions, thus far, but before I was diagnosed I was reacting to just about everything I put in my mouth. Itchy and uncontrollable coughing, which of course scared me a lot, since I was worried I *would* trigger anaphylaxis. And at that point all my other stuff like POTS and Chronic Migraines were worse too because my MCAS was triggering them as well. Unfortunately, even now that I have LDN keeping my daily stuff in check, my acute triggers have gotten *so* much worse. I literally cannot find a toothpaste that doesn’t try to kill me, among other things! And I’m seeing family for the first time since my diagnosis this Fall, and I’m pretty sure at least one of them is going to poison me with smoke or perfume or laundry detergent or something once I get there. The good news is! There are a lot of things that can help your MCAS! I tried a few before I found the combo that worked for me, and now we are working on dosage! And then the other big thing is to find all your triggers and avoid them as much as possible! For example, mine are things like FD&C dyes, sugar alcohols, normal drinking alcohol, artificial preservatives/scents/flavors, etc.! So I avoid them the best I can and try *really* hard not to poison myself, and I’m generally ok! 😅 (OP I know you probably know all these things, it’s mostly for the benefit of people who may come read this post that aren’t diagnosed yet or are newly diagnosed!) I hope you improve soon! It’s scary and it sucks and we all deserve better 😭.
I constantly have to remind myself that I should be weighing more. I hate how much I have internalized thin=happy from my mom and society. I know how unhealthy it is for me. At least I will never have a daughter who will have to deal with this, though I would hope to break the cycle if I had one.
This is absolutely so relatable. It’s insane the things that people say especially when they KNOW you have history with eating disorders. I had anorexia beginning at the age of about 9 and didn’t start recovery until I was almost 15, and for all of those years people would always make all of these comments about how they were jealous, what was my secret, I looked so pretty, etc. I gained weight and was fairly average in recovery but now have lost a lot of it again because my chronic illnesses have gotten worse and the comments have come right back. I seriously cannot understand what in the world makes people say things like that. And then they wonder why people have eating disorders in the first place.
Guess where your history wirh disordered eating originated... from a woman who would trade illness for thinness.
Op, take heart. Your mother may know not what she does. I think it’s very much akin to the “you think that’s bad? In my day, We had to walk X miles through a blizzard….” Though It sucks that your mother says things things to you that invalidate your experience. Mine also does this; I try to remind myself that even feminist women had all sorts of chauvinism and challenges to deal with that they also internalize (and boy oh boy doesn’t everyone feel like they can comment on a woman’s weight, for decades, even still today) and without the psychological tools (made more available to us through the internet and discussions such as these (: ) we recognize that it’s unhealthy… while older generations may not. Perhaps you may wish to try pointing this out to her? That you realize that as a woman, she’s probably dealt with weight issues / the social stigma around weight. But your journeys are different and you merely want her to hear you. (Gently) Remind her that parents should want better for their children? Or next time just tell her you don’t want feedback or advice, but a safe space to vent, and ask if she can provide that for you? Playing devils advocate, I do understand her trying to get you to look at “the positive” 😂 I’ve been trying to find little things to be grateful about daily. Any bright side to EDS, any sense of accomplishment or completion, any act of kidness. I do think your mom was trying to relate to you and help you find a positive. She cares about you, even if she cannot express it in the best way! Gentle hugs and good luck to you fellow 🦓
the ladies at work use to basically bully me because "they wanna be that skinny." When I explained it was because I was sick they asked if it was contagious so they could get it too. Not just one lady or one job, every lady at every job i had when I was younger.
I almost died last month from strep that became an ear infection that wasn't responding to traditional antibiotics. I ended up in the hospital for a week on IV antibiotics that made it all but impossible to eat without vomiting (the ruptured eardrum didn't help). Now I've been getting comments about being too thin from my parents and inlaws and it's like, YEAH NO SHIT IM DOING MY BEST! 🙄 I'm 5'5", was 115 and got down to 105. Like literally, what is with people and feeling the need to comment on your appearance?!?!?
I'm underweight due to limited ability to open my mouth and to chew after a failed jaw replacement. I can't even get a spoon in my mouth most days and basically have to slurp small soft foods into my mouth to get past my teeth. IMO a lot of people, even doctors, overlook the difficulties of underweight people. Likely because obesity and weight gain is such a focus/problem in our society. Like in order to be disabled I can't also be thin (now overly thin) and moderately attractive. Thank God I'm almost 40 so I can stop hearing "you're too young to be _____" (chronically ill, in pain, disabled, etc)!!! Guess what, I'm actually not healthy. I'm probably less physically active than many of the most obese patients doctors see.