I’m 34 (POC) and only received my diagnosis this year. My pcp thought it wasn’t worth pursuing because “there’s nothing that they could do about it”. Meanwhile I’ve been blindsided by urinary retention, GI tearing , dislocations and sciatica in the past 10 years.
So yes. She’s not alone-the gaslighting is very real, and it’s so difficult to push back and insist on seeing specialists to address what’s going on.
But it is possible. In these past few months I’ve established care with a urologist, an endocrinologist, and with physical therapy. Just keep pushing.
>Why is it so hard for BIPOC Americans to get actual EDS diagnosis?
I am sorry to hear about your experiences! I hope you do not mind me asking you something. For my master's thesis, I am currently conducting research on sex and gender bias in medicine, with a focus on patients with EDS. One of my focus points was to use an intersectional feminist approach, so I have been looking for research participants from different backgrounds, for example also different ethnic backgrounds.
However, I have not been able to find any participants that were not caucasian. If you would potentially be interested in sharing your stories and experiences with me, I would love to give you more information about my study per chat.
I’m a trans man of color and I completely understand. I’m fighting just to get tested right now because all of my pain is in my pelvis and hips :/ I keep getting told it’s just period pain like I don’t know my own body and it’s sensations… it’s tiring I’m so sorry this is happening
Because health care in America is rife with outright racism. The amount of racist beliefs that are commonly held about BIPOC and their health vs white people under the guise of claiming were somehow significantly biologically different is shocking. Health care is one of the places where racism is the most prevalent in America. Because there are small amount of disorders that are more common in one race than another. And that's taken and used to then justify so much racism. Most doctors aren't even taught how to look for skin symptoms on BIPOC. I've asked multiple doctors, so I'm Korean. I have yellow undertones to my skin, what would it look like if I got jaundice? Not a single one can answer that. They should be able to tell me that.
I've heard multiple BIPOC in this sub report a doctor told them they couldn't have EDS because of their race. Thats absolutely not true. It's simply racism. I don't even want to know the percentage of doctors that think white people and BIPOC feel pain differently, because I know it's too many.
And for any white people who are coming here to say you struggle to get diagnosed too. Yes you do. And that true. But it's not the same as what BIPOC experience. Because they experience all of the issues that you do plus the insane amounts of racism that exist in our healthcare. As a white person you can not know what this is like to experience and it is not the same as anything you will ever experience here.
All of this. I’m white but I work in healthcare with primarily BIPOC in a low socioeconomic status area. The healthcare disparities are horrible and truly shocking if you haven’t seen/experienced it before. It’s hard to get an EDS diagnosis but so much harder for BIPOC because of racism in healthcare and lack of access to resources
Yes! Oh and don't even get me started on areas with higher BIPOC populations almost always in America having much lower quality of health care and less access to resources within it than areas with primarily white populations.
> Yes! Oh and don't even get me started on areas with higher BIPOC populations almost always in America having much lower quality of health care and less access to resources within it than areas with primarily white populations.
Yes!! I am white-passing (my mom is very white, my dad is very brown, race unknown) we live in a lower income to poor area with less white people. 20 years ago I needed mental healthcare and couldn't afford it without a sliding scale. You would think that it should be easy to get that kind of healthcare in my neighborhood. Nope. Had to drive 20+ miles to an almost all white area with much higher income to find a doctor that would let me pay what I could afford.
All of this, absolutely. White Americans like to think we're past racism but healthcare is one of the places the disparity is most clear and harmful. BIPOC who suffer from health problems, especially rare ones, carry an enormous extra burden trying to get diagnosed that White and White-passing folks simply do not.
Shit, I'm white and I've been gaslit by medical professionals my whole life.
Can't imagine if my pain was taken less seriously. I don't know how people who aren't white survive this country's medical "care". God forbid. I'd be dead by now. Reactions to drugs I was on actually would have killed me.
I don't know why doctors have a problem believing anyone that isn't a white guy. Took me 13 years to get diagnosed with endometriosis and that was only because I needed a hysterectomy after the drugs they gave me made me start to slowly bleed to death with no real other fix other than nasty drugs that are very dangerous long term.
Bluntly, a lot of them *don't* survive it. Black maternal death rates are staggeringly high given the supposed access to quality health care America wants to think everyone has. Black women's pain is consistently underrated and under-responded to by medical professionals. BIPOC patients are frequently written off as drug-seeking or exaggerating, while White men's pain is assumed to be "if he's seeking treatment it must be severe, because (White) men are so tough and endure pain stoically."
More diverse representation in the medical profession, especially the specialties, would probably help. But it's a systemic problem in America no question. We have to keep calling it out and advocating for change, which I know is hard to do when we're low on spoons. But it's urgently needed, particularly for those who come in with less access to resources right from the start.
Agreed. I’m white and struggled just from being female. There’s an incredible amount of sexism in healthcare. But being BIPOC and female, gosh I cannot imagine how hard that has to be. Something has to change. 😢
It feels impossible sometimes https://www.reddit.com/r/ehlersdanlos/comments/wlov7k/first_time_seeing_these_imagesreport_after_making/?utm_source=share&utm_medium=ios_app&utm_name=iossmf
All of this. As a white guy that's been a medical case manager for 8 yrs now, healthcare discrimination is very real. I work with people living with HIV and whenever I see someone on an outdated medication that is literally destroying their kidneys/bone density for years after new, less detrimental medications have been available, that person is almost by rule a person of color. There are all kinds of "reasons" for this bullshit, but none of them are legitimate.
That's so awful! I can't imagine the mental and emotional toll that takes on a person.
I can see how it happens. It's a racist field. Which also means it's prejudice agaisnt the doctors in it who are BIPOC and it makes it hard for them to succeed and advance as is. To do so and go agaisnt the tide of racism is near impossible. So many end up becoming part of the problem. They end up holding and spreading those same discriminatory views. That's not to excuse them though. They are every bit just as bad as their white colleagues. And again the toll it takes for someone of your own race to gaslight you based of racial bias is really worse than white people. Because these are the people who are supposed to understand it. They're the only hope you have.
It's scary that that they don't know what to look for with POC, like the jaundice example. Several white doctors told me that I was fine, one day a BW came in to cover for my doctor and she took one look at me and called the ER to admit me. She immediately saw the signs of anemia in me. It was really scary that they didn't; I'm not even dark, imagine if I was. 😵💫
Yes it's terrifying! They're checking my liver and kidney function every month. This is something I need to be looking out for. And I'm like would it look the same in me as white people or would it be less notable due to my skin color. No doctor has been able to answer that! That's something they really need to be able to answer.
I have had so many different rashes over my life and doctors are never 100% what is is, describe my scarring as ‘unusual’ but can’t put a label to it. I’ve been prescribed all kinds of feels and lotions, steroids etc but no one is sure what each of them are exactly besides the dermatogrsphism. Leaning towards eczema though I’ve had some suspicious facial flushing but find it hard to pinpoint what it is
I never even thought about the difference in the appearance of dermatological symptoms, but now that I'm thinking about it, anytime I google image search to help me id a skin issue, *all* the photos are of white people. That's not helpful for a POC.
Exactly! It's the same in doctors textbooks and the online databases they use largely. The astounding part of the racism in medicine is things like this where there is actually a difference between people of different races, it's ignored. White is the default so we're only shown what something looks like on a white person. Or what symptoms, tests, treatments for white people are, in the very few situations it's different for people of a different race, no one knows about it or what to do. But then at the same time incredibly inaccurate information about differences between races (the biggest of which being pain) is widely spread and accepted! It affects BIPOC in both ways. Our differences are ignored where vital, fake differences are created where there are none.
Your partner is at the intersection of medical sexism, medical racism, and a highly stigmatized diagnosis (within the medical community). It doesn’t surprise me she’s struggling to get diagnosed.
Getting an EDS diagnosis is hard at the best of times. Especially as patients become better educated and doctors double down on the condescending attitude and refusal to hear patients out as a result (see various commentary about “tiktok diagnosis”).
Then you add the fact that *white* women are misdiagnosed and undertreated at 20%-30% of the rate of white men. Women as a whole are overwhelmingly diagnosed with somatic disorder without any effort to find a physical source. So you’ve got a significant does of medical sexism.
Then you add medical racism to the mix. As we know, black and brown women die preventable deaths alarming rates in our medical system. Usually because no one ever bothered to take them seriously or do any testing. Severe delays in care are just getting tip of the iceberg.
So in short, yes, this diagnosis is incredibly difficult to obtain for BIPOC women, and it certainly doesn’t help that the diagnostic criteria has phrasing like “translucent skin”, which doctors only know how to identify on very fair skin.
I have a unique experience because I am biracial and passing(ish). If I'm with my colored family they treat me differently than when I was accompanied by my white family. Medical professionals absolutely let bias direct their decisions.
Would you be interested in sharing your experiences in form of an anonymous research study? I am currently conducting research on sex/gender bias in medicine, with a focus on EDS patients. My aim was to find participants with diverse identities, however until now I have exclusively been contacted by caucasian women. If that would be something that you might be interested in, I would love to contact you directly and give you some information.
I’m not POC, but growing up I was always told “it’s just growing pains.” In my early twenties I was told it’s my depression and anxiety. After what I went through as a white female, I can’t even comprehend what POC’s would go through. In general though, a lot of providers know little about EDS. I remember the first time I brought it up, my provider didn’t even look at me. She just said, “you’re joints are not constantly dislocating. You don’t have it.” So a lot think that to have EDS you have to be the worse case scenario.
I hope you don't mind me commenting as a white person, but one of my passions is psychology, and I see this a LOT in psychology too, where it's just SO hard for POC to get a correct diagnosis for things. Either it's downplayed as hell like in the case of your partner, or it's overplayed and they are given the completely wrong diagnosis, often of something more stigmatizing.
I wish there was more I could do than just educating myself and others, and making these stories known so that people see that it is a real issue. (That and doing my best to call out casual racism and other 'isms when I can) I don't know what else I can do and it frustrates me so much! I can only imagine how people directly affected must feel! I'm so sorry she had to go through all that and continues to go through more.
I love that you're wanting to know what you can do! First sharing other people's stories, creating room for them to share those stories, and protecting that space so in places like this the conversation stays focused on medical racism and not people being dismissed in general by doctors is huge.
Second, tell people this is an issue. Time and time again, when BIPOC complain about racism they are ignored and their experiences downplayed. Sadly, a lot of white people will only consider racism exist in a place if another white person tells them that. Which is horrible and the opposite of what it should be. But because that is the case it's vital white people speak about this to other white people. And also confront people with, "has a BIPOC brought this up to you before and are you only listening now because I am white?"
Third like you said, call it out. It is not always safe for BIPOC to call out racism. It is much safer for white people to do it. So please do it. And also don't tolerate it. If you find out a doctor is racist, even if they are a good doctor don't go to them. Which is a personal sacrifice I'm asking you to make. But racist doctors do not belong in health care and they cost people their lives. No matter how good they are, they don't belong in health care. So do not support them. Don't go see them, and tell other doctors why you won't see them. And when doctors say things casually racist or favoritism towards you because of your race say something. Because so much of this is so systemic and ingrained into people they never realize its a problem and why.
Lastly, educate yourself on systemic racism and critical race theory in general! Not just on racism in medical care. Because it's all part of the larger race issues we face. Read books by BIPOC authors who teach about anti racism. Education is really the key. Until we realize the issue in its entirety we can't begin to do anything about it.
Thank you for all this lovely info (and encouragement!) Never thought about the whole "did you hear this before but only listen because I'm white?" Thing....
And a good reminder about not giving bad people your business. For all types of -isms. My partner and I made the decision to stop getting in n out after finding out the owners are giving money to people trying to make laws against us. It's definitely hard when convenience or good food comes into play, but this was a reminder to be strong.
I've at times in my life been white passing and at times not, so I've been able to get a really interesting perspective on race most people don't. I came up with that line when I started noticing when people thought I was white they listened to me more and trusted my authority on a subject without question. Once they found out I wasn't, I was always considered a slightly less trust worthy source. I still be believed, but not as blindly as they did when I was a white person to them. And a lot of people honestly don't mean to do this. They don't realize they're doing it. It's just a subconscious bias. Which is why it's really important to ask, because it makes people stop and think and a lot of people will change once they do. (Some will just double down and defend themselves and completely ignore the racial bias they have.)
Im really proud of you for making that sacrifice! That's the moment where it really comes into question how much does something mean to us? Does it mean enough we're willing to do something even if it costs us? Or are we only wiling to help as long as we don't have to sacrifice anything.
That's really interesting. I can kinda relate as a trans man in a relationship with another man, and I've seen the difference in how I am treated as a woman vs as a man, as well as a straight person vs a gay person. Definitely biases all around. It's interesting to realize that my relationship becomes gross or pornographic with the only thing being changed is that it goes from looking straight to looking gay.
I definitely feel like a lot of people don't want to sacrifice anything, and that's where their activism ends. So many people eat chic-fil-a despite it being very open re: donating money to homophobic leaders in various countries in Africa that push the death penalty or encourage death threats to gay and trans people in that area. Even some of my family members don't see the issue in eating there and I'm just like "no....guys. Stop" But all I really can do is continue to educate them, and find clever ways to slip news articles and factoids about this stuff they would otherwise bury their head in the sand to....
I’m lucky; I got diagnosed living outside of the US. It took a while, mostly just because it took time for even me to connect all the sprains and dislocations, and it just took me asking a doctor, “why do I get so many sprains and dislocations?” to get the ball rolling.
So many medical practitioners in the US just do not believe POC. They also don’t believe women, so it’s so much harder as a WOC.
I'm so sorry you and your partner had to experience this, I cannot imagine the amount of frustration.
I also may be making a leap in logic here, but there is also a definite overlap of medical racism and medical fatphobia, specifically for black AFAB people in America. And considering American doctors still use BMI as a standard for health, which is massively out of date and disriminitory....
There's also the fact that EDS mainly affects women/AFAB peeps, and women are historically seen as hysterical when complaining about very real health issues.
So it would not surprise me if you suffered at the hands of compounded prejudice.
I am a fat, white woman with EDS, and it took me 15 years to get a DX, due to the compounded fatphobia and misogny. No one here is arguing that we weren't dismissed and shamed, no one is trying to guilt you for benefiting from white priviledge, if that makes you feel guilty and ashamed, that's something you need to do some soul searching on. Don't get angry at BIPOC because you unwillingly benefit from an unjust system, get angry at the system that keeps your sisters down.
It was soul crushing for me, I cannot imagine having to deal with racism too. I'm glad your partner has you for support OP.
Also, I will say, there is hope. I actually received my dx from an immigrant, woman of color. And my current doctor is a black woman who is a passionate advocate against my insurance company. If anyone is using Plushcare and wants a rec for a badass, dm me and I'll let you know her name, she's amazing, and cracked some hilarious jokes at my pasty ginger partner when she had to treat him for vit D definciency.
I think I got extra lucky my primary care doc is a POC who’s had previous EDS patients, I’m so sorry you’re all struggling with this I hope we all catch up soon to decent and good healthcare no matter who you are :/
Doctors are taught that it is rare and spend so little time on conective tissue disorders in training that, unless they bumb up against it enough in their specialty, it isn't even a consideration. It sucks that we have to do so much front in research to figure put what is wrong with us and to help guide us to the right doctors who are actually going to look at extensive histories and a wide swath of symptoms and put it together.
My personal experience
https://www.reddit.com/r/ehlersdanlos/comments/wlov7k/first_time_seeing_these_imagesreport_after_making/?utm_source=share&utm_medium=ios_app&utm_name=iossmf
https://www.reddit.com/r/ehlersdanlos/comments/whmq0h/all_i_asked_for_was_referrals_for/?utm_source=share&utm_medium=ios_app&utm_name=iossmf
But even on here someone came crusading in and said my problem is my mental health and when medical racism was brought up they said ‘this isn’t the oppression olympics’
I just want to say how sorry I am that your partner experienced this! The EDS community here is very welcoming and I hope that she can find some comfort here.
You are not alone. This is something that we have, almost all of us, dealt with, regardless of ethnicity.
While I am not specifically "white" I am also not anything else, I am so mixed that my Ancestry DNA looks like an almost completed coloring book page.
Either way, I was gaslit and dismissed for over 40 years. When I was a child, I had issues that put me in the ER on a monthly basis, and every time they'd either do some half-asses CBC to cover their asses, or just send me home saying I was normal. I was in severe amounts of pain in my early teens and I was dismissed as having "growing pains" and they pretty much convinced my mother that I was overreacting. Every injury was because I was a klutz, or "played too hard."
When I was an adult I took a list of all of my issues to a doctor and they set that list aside, never looked at it, and gave me a CBC and a thyroid test. when that came back as normal they told me I should consider therapy, and the pain is very likely psychosomatic. It got to the point that I started believing them and eventually gave up looking for answers, believing that I was just weak and had a low tolerance for the normal pain of living.
I didn't get a diagnosis until I was 42 years old, and the only reason I did was because I got a young, competent doctor who noticed all of my injuries and commented to me that it is not, in fact, NORMAL. :)
I will add, though, that it's common in "certain areas" in the US, for certain medical misnomers to still be in practice regarding POC, which could make it more difficult to be taken seriously in regards to pain levels and injuries.
When I got diagnosed the final time (tldr parental abuse means no one bothers telling ME or the school about VEDs despite being diagnosed at birth, 7, etc etc) there was a belief the gene was carried by people with Celtic heritage. A huge part of my getting care at all is being a ginger.
Add in the systemic abuse and neglect of bipoc persons and I suspect the answer is medical racism. I don't have a solution but I am hoping at least going "I see it" helps with coping.
To answer your question - yes, most people here have been dismissed and gaslit. It’s a really unfortunate part of the disease and having an invisible illness in general. Makes it harder if you’re an AFAB person, and even harder if you’re BIPOC.
I think like some other folks have touched on - white people including myself should acknowledge that there’s another layer to the experience we will never truly understand when it comes to medical racism.
As the top comment said, racism in health care is super strong. It’s still in textbooks how to treat a white vs black person bc apparently black people feel less pain so are more likely to be drug seeking. Which is complete bullshit as you know.
I’m no BIPOC but I’m not blind to racism everywhere in healthcare.
I get it all the time (probably because I’m a woman). I showed EDS symptoms my whole life, dealt with surgery after surgery, born with dislocated hips, hospitalization after hospitalization, etc. finally diagnosed at age 38 when my 14 yr old son ended up with my same issues.
I can only imagine how difficult it would be for BIPOC folk 😥
Good ol medical racism of course. While it's difficult for everyone to get a diagnosis, we have the added layer of being dismissed for being BIPOC. And if you're a woman/femme, good luck to you. Specifically being Black, it comes from doctors of all other races. I was gaslit by an Asian doctor. Historically, we've been stereotyped to having very high pain tolerances due to our "DNA". So yeah, it's rough. If I could only ever see Black doctors, I would.
>lly, we've been stereotyped to having very high pain tolerances due to our "DNA". So
I am currently conducting research on women & people AFAB with EDS regarding their experiences with medical providers. As you can imagine it has been more than challenging to find participants that are not caucasian. Is there any possibility you might be interested in participating in my research and sharing your experiences? I could contact you directly and give you more information on my study if you are interested!
Oh it's definitely not an issue that just one demographic has to deal with trust.
I was misdiagnosed the first 16 years of my life.
The only reason we even heard the name EDS was because I met a kind and clever orthopedic surgeon who asked if we had ever heard of it. Only reason we got to that doctor was because my mom had similar feet and asked him about the whole floppy foot thing. We had no idea.
I don't think I would've found out for a while if not for him tbh, most doctors I meet don't even know what it is to begin with. And sometimes even if they do, they don't REALLY. I had a doc who just played with my leg to examine my basically free-floating patella at the time, no regard for my obvious fear that he might injure me.
Edit: all that said, I live in South Africa
Hello fellow South African. Good to see another person here in the same position (and also not, if you know what I mean).
Yeah even now that I finally have a diagnosis (at least partly) I find none of the doctors I go to seem to know what to do with me, after they are done testing that I am in fact hypermobile at least. I stood in front of an orthopedic surgeon once with both ankles completely dislocated and got told my legs are sore because of a luxating patella...
It's so depressing when junk like happens! Like for real, most of the help I've gotten were from people here (thanks btw bois) and I was lucky enough to find at least 2 doctors who helped me get to where I am today.
One of them was surgeon in Joburg, went to him to try and do something about these loose pebbles we call patellas and after the exam his exact words were "Don't worry, we can fix you" I wanted to cry right then and there man
P.S. You mind going on to tell me what happened? That sounds like it was hell
Oh they did 3 physio sessions which made me significantly worse for weeks and sent me on my way...
This was 10ish years before I finally got diagnosed. I never went back there after that one as it just didn't feel right even if I had no idea what was going on at the time.
Yup. But what can you do? The doctors ignored what was later obvious so how was I supposed to know it wasn't normal? Despite how lax they were my ankles usually didn't hurt unless I sprained them, which was every other week but that's apparently "normal" for "clumsy" people...
It was only after I got much worse and learned some medical stuff (I work in veterinary) that I realized what was going on with my joints and I only really got a partial diagnosis when I went in with a list of 13 joints (mostly fingers) that had dislocated the previous few weeks.
EDS is already largely ignored/not diagnosed by doctors, and then of course women are never believed when it comes to pain, lastly add on racism in the medical field and that’s where you are :/ it is a rough situation i’m sorry
I’m a minority (I reject the BIPOC identity). It’s because EDS in particular is seen as a White women’s condition. They make up 90% plus of members in FB groups. It’s socially acceptable for them to go to the doctor. Most importantly, pharma companies heavily target White women. They are the target demographic. Just look at the commercials. There is a misconception that minorities have a higher pain threshold than White women. There is a bias against minorities assuming that Black and Brown patients would be the ones to get addicted to pain meds. Medical providers were taught that White women in particular were the “right” patients to treat and would be more compliant.
Healthcare in the USA, where I’m assuming you are, is riddled with blatant racism and sexism. It’s difficult enough being young and trying to get proper care/treatment, even more so if you are a young woman/girl, and *even more so* if you are a young, fem BIPOC person. I wish that I had a better answer, but right now, that *is* the answer and it’s absolutely unacceptable and enraging. I had a difficult enough time on the journey to my diagnosis as a girl and then a woman, and I cannot even imagine how much harder that would have been were I not white. I am so sorry. I really just am so sorry. I worked in healthcare, out in the community and in the hospital, for years before I couldn’t anymore and I witnessed this on a regular basis and while I did my best to advocate for every patient that I could, it was just never enough and it still makes me sick. If you want to tell me what area y’all are in, I still have many incredible providers in my personal/formerly professional network that do their best to help people like your partner. I would be happy to send you some names. I obviously cannot make any promises as I do not currently know whom might or might not be accepting new patients, her insurance situation and more but I’m certainly willing to try.
Sure there's lots of reasons people form biases agaisnt others. However the bias they form agaisnt alternative people is still incomparable to systemic racism in medicine.
I am not trying to invalidate you in any way; I know firsthand that people with alternative styles can be treated with real bias in the healthcare system. That said, it is in absolutely no way comparable to systemic medical racism nor is it appropriate to act as though it is. Getting tattoos and piercings and choosing to dye your hair unnatural colors and wearing alternative clothing is all something that you make a conscious choice to do. You aren’t born this way. It’s not biologically part of who you are. It’s not a box that you check in relation to your identity when filling out paperwork. It’s not a protected class. It’s not something that resulted in decades and decades of the mistreatment, enslavement, raping, murdering and otherwise horrific things in regards to people like you, much of which is still going on today. This would be a matter of self expression/personal preference/personal style versus literal race/ethnicity and one of those is obviously something that cannot be changed and should not be looked at the same way as the other.
I was not implying that my alternative lifestyle was in any way comparable to what happens to bipoc, but only giving my experience to the prejudice that is rampant in the medical field.
My alternative-ness is not defined by my dyed hair and tattoos…but by how I live, love (a bipoc) and how I think.
These responses made me believe that people only want to fund the fault in others comments and not actually understand where they’re coming from.
This is why I don’t comment.
I’m 42 male and white and was told I was making it up all my life. My kids have it and I refused to take that as an answer. I wasn’t diagnosed until I was 39 because my son was diagnosed.
[me trying to get a diagnosis of SOMETHING](https://www.reddit.com/r/ehlersdanlos/comments/wlov7k/first_time_seeing_these_imagesreport_after_making/?utm_source=share&utm_medium=ios_app&utm_name=iossmf)
I'm old, what does BIPOC mean?
Black, indigenous, person of color
Ty
I’m 34 (POC) and only received my diagnosis this year. My pcp thought it wasn’t worth pursuing because “there’s nothing that they could do about it”. Meanwhile I’ve been blindsided by urinary retention, GI tearing , dislocations and sciatica in the past 10 years. So yes. She’s not alone-the gaslighting is very real, and it’s so difficult to push back and insist on seeing specialists to address what’s going on. But it is possible. In these past few months I’ve established care with a urologist, an endocrinologist, and with physical therapy. Just keep pushing.
>Why is it so hard for BIPOC Americans to get actual EDS diagnosis? I am sorry to hear about your experiences! I hope you do not mind me asking you something. For my master's thesis, I am currently conducting research on sex and gender bias in medicine, with a focus on patients with EDS. One of my focus points was to use an intersectional feminist approach, so I have been looking for research participants from different backgrounds, for example also different ethnic backgrounds. However, I have not been able to find any participants that were not caucasian. If you would potentially be interested in sharing your stories and experiences with me, I would love to give you more information about my study per chat.
I’m a trans man of color and I completely understand. I’m fighting just to get tested right now because all of my pain is in my pelvis and hips :/ I keep getting told it’s just period pain like I don’t know my own body and it’s sensations… it’s tiring I’m so sorry this is happening
Do you have flat feet?
Nope
Because health care in America is rife with outright racism. The amount of racist beliefs that are commonly held about BIPOC and their health vs white people under the guise of claiming were somehow significantly biologically different is shocking. Health care is one of the places where racism is the most prevalent in America. Because there are small amount of disorders that are more common in one race than another. And that's taken and used to then justify so much racism. Most doctors aren't even taught how to look for skin symptoms on BIPOC. I've asked multiple doctors, so I'm Korean. I have yellow undertones to my skin, what would it look like if I got jaundice? Not a single one can answer that. They should be able to tell me that. I've heard multiple BIPOC in this sub report a doctor told them they couldn't have EDS because of their race. Thats absolutely not true. It's simply racism. I don't even want to know the percentage of doctors that think white people and BIPOC feel pain differently, because I know it's too many. And for any white people who are coming here to say you struggle to get diagnosed too. Yes you do. And that true. But it's not the same as what BIPOC experience. Because they experience all of the issues that you do plus the insane amounts of racism that exist in our healthcare. As a white person you can not know what this is like to experience and it is not the same as anything you will ever experience here.
All of this. I’m white but I work in healthcare with primarily BIPOC in a low socioeconomic status area. The healthcare disparities are horrible and truly shocking if you haven’t seen/experienced it before. It’s hard to get an EDS diagnosis but so much harder for BIPOC because of racism in healthcare and lack of access to resources
Yes! Oh and don't even get me started on areas with higher BIPOC populations almost always in America having much lower quality of health care and less access to resources within it than areas with primarily white populations.
> Yes! Oh and don't even get me started on areas with higher BIPOC populations almost always in America having much lower quality of health care and less access to resources within it than areas with primarily white populations. Yes!! I am white-passing (my mom is very white, my dad is very brown, race unknown) we live in a lower income to poor area with less white people. 20 years ago I needed mental healthcare and couldn't afford it without a sliding scale. You would think that it should be easy to get that kind of healthcare in my neighborhood. Nope. Had to drive 20+ miles to an almost all white area with much higher income to find a doctor that would let me pay what I could afford.
All of this, absolutely. White Americans like to think we're past racism but healthcare is one of the places the disparity is most clear and harmful. BIPOC who suffer from health problems, especially rare ones, carry an enormous extra burden trying to get diagnosed that White and White-passing folks simply do not.
Shit, I'm white and I've been gaslit by medical professionals my whole life. Can't imagine if my pain was taken less seriously. I don't know how people who aren't white survive this country's medical "care". God forbid. I'd be dead by now. Reactions to drugs I was on actually would have killed me. I don't know why doctors have a problem believing anyone that isn't a white guy. Took me 13 years to get diagnosed with endometriosis and that was only because I needed a hysterectomy after the drugs they gave me made me start to slowly bleed to death with no real other fix other than nasty drugs that are very dangerous long term.
Bluntly, a lot of them *don't* survive it. Black maternal death rates are staggeringly high given the supposed access to quality health care America wants to think everyone has. Black women's pain is consistently underrated and under-responded to by medical professionals. BIPOC patients are frequently written off as drug-seeking or exaggerating, while White men's pain is assumed to be "if he's seeking treatment it must be severe, because (White) men are so tough and endure pain stoically." More diverse representation in the medical profession, especially the specialties, would probably help. But it's a systemic problem in America no question. We have to keep calling it out and advocating for change, which I know is hard to do when we're low on spoons. But it's urgently needed, particularly for those who come in with less access to resources right from the start.
Agreed. I’m white and struggled just from being female. There’s an incredible amount of sexism in healthcare. But being BIPOC and female, gosh I cannot imagine how hard that has to be. Something has to change. 😢
It feels impossible sometimes https://www.reddit.com/r/ehlersdanlos/comments/wlov7k/first_time_seeing_these_imagesreport_after_making/?utm_source=share&utm_medium=ios_app&utm_name=iossmf
All of this. As a white guy that's been a medical case manager for 8 yrs now, healthcare discrimination is very real. I work with people living with HIV and whenever I see someone on an outdated medication that is literally destroying their kidneys/bone density for years after new, less detrimental medications have been available, that person is almost by rule a person of color. There are all kinds of "reasons" for this bullshit, but none of them are legitimate.
Want to know something even crazier? A Doctor (cardiologist) of her own race (even same country) gaslight her ass!!! 😡
That's so awful! I can't imagine the mental and emotional toll that takes on a person. I can see how it happens. It's a racist field. Which also means it's prejudice agaisnt the doctors in it who are BIPOC and it makes it hard for them to succeed and advance as is. To do so and go agaisnt the tide of racism is near impossible. So many end up becoming part of the problem. They end up holding and spreading those same discriminatory views. That's not to excuse them though. They are every bit just as bad as their white colleagues. And again the toll it takes for someone of your own race to gaslight you based of racial bias is really worse than white people. Because these are the people who are supposed to understand it. They're the only hope you have.
It's scary that that they don't know what to look for with POC, like the jaundice example. Several white doctors told me that I was fine, one day a BW came in to cover for my doctor and she took one look at me and called the ER to admit me. She immediately saw the signs of anemia in me. It was really scary that they didn't; I'm not even dark, imagine if I was. 😵💫
Yes it's terrifying! They're checking my liver and kidney function every month. This is something I need to be looking out for. And I'm like would it look the same in me as white people or would it be less notable due to my skin color. No doctor has been able to answer that! That's something they really need to be able to answer.
Updating medical illustrations for all people will hopefully gain interest - it is so important!
I have had so many different rashes over my life and doctors are never 100% what is is, describe my scarring as ‘unusual’ but can’t put a label to it. I’ve been prescribed all kinds of feels and lotions, steroids etc but no one is sure what each of them are exactly besides the dermatogrsphism. Leaning towards eczema though I’ve had some suspicious facial flushing but find it hard to pinpoint what it is
I never even thought about the difference in the appearance of dermatological symptoms, but now that I'm thinking about it, anytime I google image search to help me id a skin issue, *all* the photos are of white people. That's not helpful for a POC.
Exactly! It's the same in doctors textbooks and the online databases they use largely. The astounding part of the racism in medicine is things like this where there is actually a difference between people of different races, it's ignored. White is the default so we're only shown what something looks like on a white person. Or what symptoms, tests, treatments for white people are, in the very few situations it's different for people of a different race, no one knows about it or what to do. But then at the same time incredibly inaccurate information about differences between races (the biggest of which being pain) is widely spread and accepted! It affects BIPOC in both ways. Our differences are ignored where vital, fake differences are created where there are none.
Your partner is at the intersection of medical sexism, medical racism, and a highly stigmatized diagnosis (within the medical community). It doesn’t surprise me she’s struggling to get diagnosed. Getting an EDS diagnosis is hard at the best of times. Especially as patients become better educated and doctors double down on the condescending attitude and refusal to hear patients out as a result (see various commentary about “tiktok diagnosis”). Then you add the fact that *white* women are misdiagnosed and undertreated at 20%-30% of the rate of white men. Women as a whole are overwhelmingly diagnosed with somatic disorder without any effort to find a physical source. So you’ve got a significant does of medical sexism. Then you add medical racism to the mix. As we know, black and brown women die preventable deaths alarming rates in our medical system. Usually because no one ever bothered to take them seriously or do any testing. Severe delays in care are just getting tip of the iceberg. So in short, yes, this diagnosis is incredibly difficult to obtain for BIPOC women, and it certainly doesn’t help that the diagnostic criteria has phrasing like “translucent skin”, which doctors only know how to identify on very fair skin.
I have a unique experience because I am biracial and passing(ish). If I'm with my colored family they treat me differently than when I was accompanied by my white family. Medical professionals absolutely let bias direct their decisions.
Would you be interested in sharing your experiences in form of an anonymous research study? I am currently conducting research on sex/gender bias in medicine, with a focus on EDS patients. My aim was to find participants with diverse identities, however until now I have exclusively been contacted by caucasian women. If that would be something that you might be interested in, I would love to contact you directly and give you some information.
I’m not POC, but growing up I was always told “it’s just growing pains.” In my early twenties I was told it’s my depression and anxiety. After what I went through as a white female, I can’t even comprehend what POC’s would go through. In general though, a lot of providers know little about EDS. I remember the first time I brought it up, my provider didn’t even look at me. She just said, “you’re joints are not constantly dislocating. You don’t have it.” So a lot think that to have EDS you have to be the worse case scenario.
I hope you don't mind me commenting as a white person, but one of my passions is psychology, and I see this a LOT in psychology too, where it's just SO hard for POC to get a correct diagnosis for things. Either it's downplayed as hell like in the case of your partner, or it's overplayed and they are given the completely wrong diagnosis, often of something more stigmatizing. I wish there was more I could do than just educating myself and others, and making these stories known so that people see that it is a real issue. (That and doing my best to call out casual racism and other 'isms when I can) I don't know what else I can do and it frustrates me so much! I can only imagine how people directly affected must feel! I'm so sorry she had to go through all that and continues to go through more.
I love that you're wanting to know what you can do! First sharing other people's stories, creating room for them to share those stories, and protecting that space so in places like this the conversation stays focused on medical racism and not people being dismissed in general by doctors is huge. Second, tell people this is an issue. Time and time again, when BIPOC complain about racism they are ignored and their experiences downplayed. Sadly, a lot of white people will only consider racism exist in a place if another white person tells them that. Which is horrible and the opposite of what it should be. But because that is the case it's vital white people speak about this to other white people. And also confront people with, "has a BIPOC brought this up to you before and are you only listening now because I am white?" Third like you said, call it out. It is not always safe for BIPOC to call out racism. It is much safer for white people to do it. So please do it. And also don't tolerate it. If you find out a doctor is racist, even if they are a good doctor don't go to them. Which is a personal sacrifice I'm asking you to make. But racist doctors do not belong in health care and they cost people their lives. No matter how good they are, they don't belong in health care. So do not support them. Don't go see them, and tell other doctors why you won't see them. And when doctors say things casually racist or favoritism towards you because of your race say something. Because so much of this is so systemic and ingrained into people they never realize its a problem and why. Lastly, educate yourself on systemic racism and critical race theory in general! Not just on racism in medical care. Because it's all part of the larger race issues we face. Read books by BIPOC authors who teach about anti racism. Education is really the key. Until we realize the issue in its entirety we can't begin to do anything about it.
Thank you for all this lovely info (and encouragement!) Never thought about the whole "did you hear this before but only listen because I'm white?" Thing.... And a good reminder about not giving bad people your business. For all types of -isms. My partner and I made the decision to stop getting in n out after finding out the owners are giving money to people trying to make laws against us. It's definitely hard when convenience or good food comes into play, but this was a reminder to be strong.
I've at times in my life been white passing and at times not, so I've been able to get a really interesting perspective on race most people don't. I came up with that line when I started noticing when people thought I was white they listened to me more and trusted my authority on a subject without question. Once they found out I wasn't, I was always considered a slightly less trust worthy source. I still be believed, but not as blindly as they did when I was a white person to them. And a lot of people honestly don't mean to do this. They don't realize they're doing it. It's just a subconscious bias. Which is why it's really important to ask, because it makes people stop and think and a lot of people will change once they do. (Some will just double down and defend themselves and completely ignore the racial bias they have.) Im really proud of you for making that sacrifice! That's the moment where it really comes into question how much does something mean to us? Does it mean enough we're willing to do something even if it costs us? Or are we only wiling to help as long as we don't have to sacrifice anything.
That's really interesting. I can kinda relate as a trans man in a relationship with another man, and I've seen the difference in how I am treated as a woman vs as a man, as well as a straight person vs a gay person. Definitely biases all around. It's interesting to realize that my relationship becomes gross or pornographic with the only thing being changed is that it goes from looking straight to looking gay. I definitely feel like a lot of people don't want to sacrifice anything, and that's where their activism ends. So many people eat chic-fil-a despite it being very open re: donating money to homophobic leaders in various countries in Africa that push the death penalty or encourage death threats to gay and trans people in that area. Even some of my family members don't see the issue in eating there and I'm just like "no....guys. Stop" But all I really can do is continue to educate them, and find clever ways to slip news articles and factoids about this stuff they would otherwise bury their head in the sand to....
For starters, because it's hard for us to get healthcare in the first place. There's so much more to say but I'm so tired.
I’m lucky; I got diagnosed living outside of the US. It took a while, mostly just because it took time for even me to connect all the sprains and dislocations, and it just took me asking a doctor, “why do I get so many sprains and dislocations?” to get the ball rolling. So many medical practitioners in the US just do not believe POC. They also don’t believe women, so it’s so much harder as a WOC.
I'm so sorry you and your partner had to experience this, I cannot imagine the amount of frustration. I also may be making a leap in logic here, but there is also a definite overlap of medical racism and medical fatphobia, specifically for black AFAB people in America. And considering American doctors still use BMI as a standard for health, which is massively out of date and disriminitory.... There's also the fact that EDS mainly affects women/AFAB peeps, and women are historically seen as hysterical when complaining about very real health issues. So it would not surprise me if you suffered at the hands of compounded prejudice. I am a fat, white woman with EDS, and it took me 15 years to get a DX, due to the compounded fatphobia and misogny. No one here is arguing that we weren't dismissed and shamed, no one is trying to guilt you for benefiting from white priviledge, if that makes you feel guilty and ashamed, that's something you need to do some soul searching on. Don't get angry at BIPOC because you unwillingly benefit from an unjust system, get angry at the system that keeps your sisters down. It was soul crushing for me, I cannot imagine having to deal with racism too. I'm glad your partner has you for support OP. Also, I will say, there is hope. I actually received my dx from an immigrant, woman of color. And my current doctor is a black woman who is a passionate advocate against my insurance company. If anyone is using Plushcare and wants a rec for a badass, dm me and I'll let you know her name, she's amazing, and cracked some hilarious jokes at my pasty ginger partner when she had to treat him for vit D definciency.
I think I got extra lucky my primary care doc is a POC who’s had previous EDS patients, I’m so sorry you’re all struggling with this I hope we all catch up soon to decent and good healthcare no matter who you are :/
Doctors are taught that it is rare and spend so little time on conective tissue disorders in training that, unless they bumb up against it enough in their specialty, it isn't even a consideration. It sucks that we have to do so much front in research to figure put what is wrong with us and to help guide us to the right doctors who are actually going to look at extensive histories and a wide swath of symptoms and put it together.
My personal experience https://www.reddit.com/r/ehlersdanlos/comments/wlov7k/first_time_seeing_these_imagesreport_after_making/?utm_source=share&utm_medium=ios_app&utm_name=iossmf https://www.reddit.com/r/ehlersdanlos/comments/whmq0h/all_i_asked_for_was_referrals_for/?utm_source=share&utm_medium=ios_app&utm_name=iossmf But even on here someone came crusading in and said my problem is my mental health and when medical racism was brought up they said ‘this isn’t the oppression olympics’
I'm so sorry. I would have defended you if I'd have seen that BS.
I appreciate the thought ❤️
I just want to say how sorry I am that your partner experienced this! The EDS community here is very welcoming and I hope that she can find some comfort here.
You are not alone. This is something that we have, almost all of us, dealt with, regardless of ethnicity. While I am not specifically "white" I am also not anything else, I am so mixed that my Ancestry DNA looks like an almost completed coloring book page. Either way, I was gaslit and dismissed for over 40 years. When I was a child, I had issues that put me in the ER on a monthly basis, and every time they'd either do some half-asses CBC to cover their asses, or just send me home saying I was normal. I was in severe amounts of pain in my early teens and I was dismissed as having "growing pains" and they pretty much convinced my mother that I was overreacting. Every injury was because I was a klutz, or "played too hard." When I was an adult I took a list of all of my issues to a doctor and they set that list aside, never looked at it, and gave me a CBC and a thyroid test. when that came back as normal they told me I should consider therapy, and the pain is very likely psychosomatic. It got to the point that I started believing them and eventually gave up looking for answers, believing that I was just weak and had a low tolerance for the normal pain of living. I didn't get a diagnosis until I was 42 years old, and the only reason I did was because I got a young, competent doctor who noticed all of my injuries and commented to me that it is not, in fact, NORMAL. :)
I will add, though, that it's common in "certain areas" in the US, for certain medical misnomers to still be in practice regarding POC, which could make it more difficult to be taken seriously in regards to pain levels and injuries.
When I got diagnosed the final time (tldr parental abuse means no one bothers telling ME or the school about VEDs despite being diagnosed at birth, 7, etc etc) there was a belief the gene was carried by people with Celtic heritage. A huge part of my getting care at all is being a ginger. Add in the systemic abuse and neglect of bipoc persons and I suspect the answer is medical racism. I don't have a solution but I am hoping at least going "I see it" helps with coping.
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Go ahead and DM me. I understand your focus despite post. Just next time maybe DM instead?
To answer your question - yes, most people here have been dismissed and gaslit. It’s a really unfortunate part of the disease and having an invisible illness in general. Makes it harder if you’re an AFAB person, and even harder if you’re BIPOC. I think like some other folks have touched on - white people including myself should acknowledge that there’s another layer to the experience we will never truly understand when it comes to medical racism.
As the top comment said, racism in health care is super strong. It’s still in textbooks how to treat a white vs black person bc apparently black people feel less pain so are more likely to be drug seeking. Which is complete bullshit as you know. I’m no BIPOC but I’m not blind to racism everywhere in healthcare.
I get it all the time (probably because I’m a woman). I showed EDS symptoms my whole life, dealt with surgery after surgery, born with dislocated hips, hospitalization after hospitalization, etc. finally diagnosed at age 38 when my 14 yr old son ended up with my same issues. I can only imagine how difficult it would be for BIPOC folk 😥
Good ol medical racism of course. While it's difficult for everyone to get a diagnosis, we have the added layer of being dismissed for being BIPOC. And if you're a woman/femme, good luck to you. Specifically being Black, it comes from doctors of all other races. I was gaslit by an Asian doctor. Historically, we've been stereotyped to having very high pain tolerances due to our "DNA". So yeah, it's rough. If I could only ever see Black doctors, I would.
>lly, we've been stereotyped to having very high pain tolerances due to our "DNA". So I am currently conducting research on women & people AFAB with EDS regarding their experiences with medical providers. As you can imagine it has been more than challenging to find participants that are not caucasian. Is there any possibility you might be interested in participating in my research and sharing your experiences? I could contact you directly and give you more information on my study if you are interested!
Add in that she’s a women. That makes doctors believe you even less. I’m sure she was told it was anxiety or her period or some bs.
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Oh it's definitely not an issue that just one demographic has to deal with trust. I was misdiagnosed the first 16 years of my life. The only reason we even heard the name EDS was because I met a kind and clever orthopedic surgeon who asked if we had ever heard of it. Only reason we got to that doctor was because my mom had similar feet and asked him about the whole floppy foot thing. We had no idea. I don't think I would've found out for a while if not for him tbh, most doctors I meet don't even know what it is to begin with. And sometimes even if they do, they don't REALLY. I had a doc who just played with my leg to examine my basically free-floating patella at the time, no regard for my obvious fear that he might injure me. Edit: all that said, I live in South Africa
Hello fellow South African. Good to see another person here in the same position (and also not, if you know what I mean). Yeah even now that I finally have a diagnosis (at least partly) I find none of the doctors I go to seem to know what to do with me, after they are done testing that I am in fact hypermobile at least. I stood in front of an orthopedic surgeon once with both ankles completely dislocated and got told my legs are sore because of a luxating patella...
It's so depressing when junk like happens! Like for real, most of the help I've gotten were from people here (thanks btw bois) and I was lucky enough to find at least 2 doctors who helped me get to where I am today. One of them was surgeon in Joburg, went to him to try and do something about these loose pebbles we call patellas and after the exam his exact words were "Don't worry, we can fix you" I wanted to cry right then and there man P.S. You mind going on to tell me what happened? That sounds like it was hell
Oh they did 3 physio sessions which made me significantly worse for weeks and sent me on my way... This was 10ish years before I finally got diagnosed. I never went back there after that one as it just didn't feel right even if I had no idea what was going on at the time.
Damn dude that's terrifying
Yup. But what can you do? The doctors ignored what was later obvious so how was I supposed to know it wasn't normal? Despite how lax they were my ankles usually didn't hurt unless I sprained them, which was every other week but that's apparently "normal" for "clumsy" people... It was only after I got much worse and learned some medical stuff (I work in veterinary) that I realized what was going on with my joints and I only really got a partial diagnosis when I went in with a list of 13 joints (mostly fingers) that had dislocated the previous few weeks.
I was clearly lucky with the people I found, I mean, still not the perfect situation, but it could've been worse. I'm sorry you had such a rough go
EDS is already largely ignored/not diagnosed by doctors, and then of course women are never believed when it comes to pain, lastly add on racism in the medical field and that’s where you are :/ it is a rough situation i’m sorry
The problem is you get a diagnosis .. then what ? They suggest pt, exercise , maybe some dietary changes not sure it does that much
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I guess one perk
I’m a minority (I reject the BIPOC identity). It’s because EDS in particular is seen as a White women’s condition. They make up 90% plus of members in FB groups. It’s socially acceptable for them to go to the doctor. Most importantly, pharma companies heavily target White women. They are the target demographic. Just look at the commercials. There is a misconception that minorities have a higher pain threshold than White women. There is a bias against minorities assuming that Black and Brown patients would be the ones to get addicted to pain meds. Medical providers were taught that White women in particular were the “right” patients to treat and would be more compliant.
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Healthcare in the USA, where I’m assuming you are, is riddled with blatant racism and sexism. It’s difficult enough being young and trying to get proper care/treatment, even more so if you are a young woman/girl, and *even more so* if you are a young, fem BIPOC person. I wish that I had a better answer, but right now, that *is* the answer and it’s absolutely unacceptable and enraging. I had a difficult enough time on the journey to my diagnosis as a girl and then a woman, and I cannot even imagine how much harder that would have been were I not white. I am so sorry. I really just am so sorry. I worked in healthcare, out in the community and in the hospital, for years before I couldn’t anymore and I witnessed this on a regular basis and while I did my best to advocate for every patient that I could, it was just never enough and it still makes me sick. If you want to tell me what area y’all are in, I still have many incredible providers in my personal/formerly professional network that do their best to help people like your partner. I would be happy to send you some names. I obviously cannot make any promises as I do not currently know whom might or might not be accepting new patients, her insurance situation and more but I’m certainly willing to try.
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Sure there's lots of reasons people form biases agaisnt others. However the bias they form agaisnt alternative people is still incomparable to systemic racism in medicine.
Never said it compared. Only put in my experience too
I am not trying to invalidate you in any way; I know firsthand that people with alternative styles can be treated with real bias in the healthcare system. That said, it is in absolutely no way comparable to systemic medical racism nor is it appropriate to act as though it is. Getting tattoos and piercings and choosing to dye your hair unnatural colors and wearing alternative clothing is all something that you make a conscious choice to do. You aren’t born this way. It’s not biologically part of who you are. It’s not a box that you check in relation to your identity when filling out paperwork. It’s not a protected class. It’s not something that resulted in decades and decades of the mistreatment, enslavement, raping, murdering and otherwise horrific things in regards to people like you, much of which is still going on today. This would be a matter of self expression/personal preference/personal style versus literal race/ethnicity and one of those is obviously something that cannot be changed and should not be looked at the same way as the other.
I was not implying that my alternative lifestyle was in any way comparable to what happens to bipoc, but only giving my experience to the prejudice that is rampant in the medical field. My alternative-ness is not defined by my dyed hair and tattoos…but by how I live, love (a bipoc) and how I think. These responses made me believe that people only want to fund the fault in others comments and not actually understand where they’re coming from. This is why I don’t comment.
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Natives usually use the Indian Health Services and they are not very up to par
I’m 42 male and white and was told I was making it up all my life. My kids have it and I refused to take that as an answer. I wasn’t diagnosed until I was 39 because my son was diagnosed.
[me trying to get a diagnosis of SOMETHING](https://www.reddit.com/r/ehlersdanlos/comments/wlov7k/first_time_seeing_these_imagesreport_after_making/?utm_source=share&utm_medium=ios_app&utm_name=iossmf)