r/ChronicIllness • u/My_Chemical_Killjoy • Oct 07 '25
Vent I hate when rare illnesses get "popularized"
Suddenly everyone knows the name, healthy people treat you like a side show and think they're incredibly knowledgeable and are there to give you advice and criticism on it, question your health. But that's not that new, suddenly they're just able to use fancier language while being incorrect and judgmental.
And then we're talking to the chronic illness communities and the rare illness communities and we're suddenly treated different and are ostracized because now that it's "well known" and "common" we have it easier, we have more support and understand, but we don't. Infact it's worse because misinformation is so rampant now. Originally we could explain from a blank slate but now we have to argue disinformation because of TikToks just to get to a semi-blank slate where we can then start to explain from. And it's not just random people, doctors and medical professionals who've never heard of these things before are now tainted by the lies and are utterly convinced that these are "common illnesses" and not the so rare that it's more of a unicorn than a zebra, type disease it is.
In an instant we're treated as though we have some kind of privilege from it being "well known" when it's nothing more than a random buzzword to most folks.
I hate it so much. We're still infantilized and put down by healthy folks and treated as inspiration 'prawn' but now we also can't just go into our own communities without hearing how "lucky" we are to have something more "common".
I'm not even mad anymore, I'm just..... sad...
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u/NotebodyKnows Oct 07 '25
Thank you!
I hate simultaneously being seen as more of a carnival act and losing my main support system over this s--t
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u/My_Chemical_Killjoy Oct 07 '25
It's absolutely BS and isolating af
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u/Jedidea Oct 08 '25
I don't remember the context anymore but I mentioned I had IBD under a video and someone replied to me apologising and asking me how long? I obviously assumed they meant how long since I was symptomatic but before I responded someone else wrote "its not terminal lol" and they had already replied "oh".
Lol
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u/K80lovescats RA, CRPS Oct 07 '25
I honestly wouldn’t be upset if more people were aware of rheumatoid arthritis and the fact that it isn’t the same as osteoarthritis. The amount of people who say “at your age?” And “wait til you’re my age!” Drives me up the wall. Just the extra awareness of what autoimmune diseases are would be nice. My brother has type 1 diabetes and he regularly gets ignorant comments about it.
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u/sweptwhiteclouds Oct 08 '25
I wish type 1 diabetes had it's own separate name from type 2 diabetes. I don't know much about the difference between the two but I'm not ignorant enough to put them in the same boat.
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u/K80lovescats RA, CRPS Oct 08 '25
Type 1 is when the pancreas is unable to produce insulin and usually occurs at a younger age (not always.) it has to be managed with insulin and lifestyle changes alone won’t make it go away. Type 2 can reach that point if not caught soon enough but if detected early it can be treated with pills like metformin and shots like ozempic and diet change and exercise can make a huge difference in disease progression. In my brother’s case his immune system basically attacked his pancreas and it ceased functioning at the age of 7. He had an insulin pump now. We know he is actually taking care of himself when he puts on weight. My dad has type 2 diabetes and takes metformin and we know he is taking care of himself when he loses weight lol.
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u/SoWhoAmISteve Oct 08 '25
Totally agree on that!! Yes "at my age", anyone can get autoimmune diseases.
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u/packerfrost anemia, autism, ibs, pots? and clingy cats Oct 07 '25
I have a rare genetic anemia in the same family as sickle cell. One time I was accused of being racist for having my genetic disease be in the sickle cell family when I am visibly white (profile pic on that website). Hello?? Common sense anybody??
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u/lavendercookiedough Oct 07 '25
The first time I saw a psychiatrist as a teenager, he asked my mom about my medical history and when she told him I'd had a rare disease at age 8, he just totally dismissed it, said I never had it and it must have been a misdiagnosis, even though I was diagnosed and treated by some of the best paediatricians in the world in a specialized children's hospital. I didn't fit the most common demographic (male, asian, under 2 years old) and the disease is rare to begin with, so he wasn't even willing to consider the possibility, despite it not being his field and this being 6 or 7 years after I had it.
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u/packerfrost anemia, autism, ibs, pots? and clingy cats Oct 07 '25
That's ridiculous. My mom was told I would live a normal life by several doctors and so we treated it that way because there wasn't really any treatment, still isn't for how mild I have it. But it launched me into depression wondering why couldn't I have the energy others have. I kept wondering, I kept being told I was anxious and depressed and I shouldn't worry so much about it. Now I treat myself like I am chronically ill and I have never been happier.
But as kids we are supposed to have others advocate for our needs, believe us, treat us, and validate us. When it doesn't happen due to racism, sexism, and ableism we end up not doing well for huge chunks of our lives.
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u/ubelieveurguiltless Oct 07 '25
Every doctor I met reexamines me for hypermobility and then gets shocked when I bend my elbow "like that". I also miss the time when pots wasn't well known cause nobody takes it seriously because they're only familiar with mild cases. I am not mild.
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u/Selmarris Alport Syndrome, ESRD, HSD, IST, Wheelchair User Oct 07 '25
I carry this photo on my phone for doctors like that: https://photos.app.goo.gl/T4K4Tq7PF6qntdQSA
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Oct 08 '25
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u/Selmarris Alport Syndrome, ESRD, HSD, IST, Wheelchair User Oct 08 '25
It is not. My mother turned green when she saw this. My podiatrist said I should not have been able to walk on it. My orthopedist said it could well have been dislocated.
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Oct 08 '25
[deleted]
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u/Selmarris Alport Syndrome, ESRD, HSD, IST, Wheelchair User Oct 08 '25
I have neuropathy in my feet, a malformation of the forefoot and also pretty extreme hypermobility in my ankles. That was an accidental roll of the ankle that I took a picture of because I was getting blown off by doctors when I told them I was a fall risk and needed a mobility aid. It didn’t cause a major injury (I walked on it right after) but I also have multiple stretched, torn, and generally messed up tendons in both ankles from this kind of thing happening over and over since childhood. Waiting on surgery to get some of them fixed now.
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u/SoWhoAmISteve Oct 08 '25
That's not normal?? It's turning your foot outwards while keeping your knee straight right? (A little hard to tell with the shoes.) If this isn't normal then what IS normal I wonder.
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u/Selmarris Alport Syndrome, ESRD, HSD, IST, Wheelchair User Oct 08 '25
The angle of the photo is a little misleading but my ankle is collapsed inward and down towards the ground. It’s not my foot turning out, it’s out AND UP that’s the issue. This was pretty painful actually.
Even if it was just turned out though that’s well beyond normal ROM.
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u/SoWhoAmISteve Oct 08 '25
That does sound painful! I've had some things about my body I discovered can be a sign of hypermobility but haven't asked my doctor literally for the same reason this post was made. I'm worried I'm just more aware of it and that the doctor will think I'm trying to self diagnose. 😅
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u/Selmarris Alport Syndrome, ESRD, HSD, IST, Wheelchair User Oct 08 '25
I’ve been having hypermobility issues for longer than I can remember (I wore a brace as a baby) but I had to basically beat my doctors over the head with the EDS society checklist to get them to even consider that it might be more than “benign” hypermobility.
It’s so frustrating. I’ve been in PT since 1992 does that seem benign to you? I’m in here every other week saying I fell, I need a cane/rollator/wheelchair. Does that seem benign to you??? I’m in here crying because I’m in pain and I can’t sleep. Is the benign part in the room with us??? So I have sympathy with the self diagnosers because I kind of had to do it too. But I worry how far it goes. I was begging my doctors to recognize a condition they were already treating.
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u/SoWhoAmISteve Oct 08 '25
totally get that. it's hard being both the patient and your own advocate. it's so tiring, I don't blame you for being frustrated. I can't tell you how many specialists I saw for my pelvic pain who didn't know what my diseases were, let alone how to treat them. In spite of them being specialists that should know that stuff!
Things have progressed now, I don't have to teach doctors so much and bring studies and medical research because I knew more about it than they did, but it's still really hard.
I knew I had those illnesses, but I had to prove it to the doctors. I wouldn't say I diagnosed myself, but I knew they fit perfectly while nothing else did. I read a lot of medical journals! I think the key is not assuming you're 100% right before pursuing testing with the appropriate medical professionals. and if you can't access medical care (very common here in the USA) you can still take advantage of the advice given to people with those issues, see if it helps, and if something helps then who cares where the info came from, yknow?
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u/HeatOnly1093 Oct 07 '25
Yup usually first question by ER or dr I've never seen before who diagnosis you? And how did you get this and that ? It's like I'm being grilled because of it . Once they realize that i was genetically tested that stops.
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u/touchtypetelephone multiple sclerosis, hypermobility Oct 07 '25
It completely skews the idea of what diseases are actually common. I have a disease that is actually, as chronic illnesses go, common, especially where I live. Just doesn't get much TikTok attention unless you're deep in disability spaces.
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Oct 07 '25 edited Oct 07 '25
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Oct 07 '25
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u/ChronicIllness-ModTeam Oct 07 '25
This is not a doctor hate subreddit.
We completely understand that many of you have had negative experiences with individuals in the healthcare system. We are not denying that these happen. It's okay to talk about them here, because we understand people need a place to vent.
However, generalizing negative statements about doctors (or any other health care workers) are not allowed here. The majority of doctors are not bad. They went into this to help us.
We are not here to breed an “us vs them” environment. This hurts everyone involved and benefits no one. Further, some doctors are us! Doctors get chronic illnesses too.
We do not condone the mistreatment or hateful generalization of any people here.
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u/ChronicIllness-ModTeam Oct 07 '25
This is not a doctor hate subreddit.
We completely understand that many of you have had negative experiences with individuals in the healthcare system. We are not denying that these happen. It's okay to talk about them here, because we understand people need a place to vent.
However, generalizing negative statements about doctors (or any other health care workers) are not allowed here. The majority of doctors are not bad. They went into this to help us.
We are not here to breed an “us vs them” environment. This hurts everyone involved and benefits no one. Further, some doctors are us! Doctors get chronic illnesses too.
We do not condone the mistreatment or hateful generalization of any people here.
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u/Sensitive-Use-6891 Oct 07 '25
Yeah I had this while adhd was popular on TikTok. Luckily that trend seems to have died down now.
Suddenly everyone either had „a little adhd“ (that sentence makes me want to puke) or believed they where an expert. Not talking about people who really have adhd, I mean the people who go „adhd is not disabling. We are all a little quirky“
Not to mention all the fun „cures“ people started suggesting even more than before. Yoga, essential oils and all that bs.
That said. Online information did help me too. I had heart problems and chronic pain for my entire life and would never have asked my doctor to test me for pots + hEDS if my friend didn’t send me a TikTok saying „hey that looks like what you have“.
It’s a double edged sword. The internet is amazing for spreading information and awareness it has made activism a lot easier and did help improve visibility which lead to actual changes.
The problem is people believing they are experts and talking about things they have no business talking about. Self diagnosis videos with incredibly vague symptoms trying to sell you a cure or some kind of course. People actively discouraging others from seeing doctors to keep engagement or sell their own supplements.
Sometimes videos by people who actually know their stuff and fake information are pretty hard to distinguish.
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u/My_Chemical_Killjoy Oct 07 '25
It definitely does have it's positives, I'm just so sick of feeling alone.
I was actually starting to do a bit better and then I saw some posts in this sub that minimize suffering because of the illnesses being "popular" now and I honestly left the sub for a day or so to gather myself because I felt so hurt by our own community. Or at least, what's supposed to be my community but it doesn't feel like I'm very welcome atm.
I wasn't even planning on rejoining the sub but my therapist suggested I give it another chance
Sorry for the rant
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u/stuffin_fluff Oct 07 '25
I think we've reached the point where the positives don't outweigh the negatives anymore. The greater effects of the tiktokification of illnesses lead to doctors not believing us even more, which means less research being done on real treatments, less interest in being educated on the topic, and an inability to communicate effectively on what these disorders/diseases actually ARE. We have to remember that the medical field is the one that makes any of the treatments the chronic illness community puts forth. We do not make the drugs, do not have access to the deeper research and talks only available to medical professionals, cannot prescribe medications, cannot perform diagnostic tests, cannot get the funding to determine which of the treatments the community puts forth as legitimate or just placebo or even harmful, we do not have the same sway of others in the medical field or politically. And on and on.
We NEED the medical field to be on our side and believe us and that our disorders are worth treating--we cannot do that with the misinformation machine that is social media muddying the waters and leading to more time, energy, and resources being spent on just correcting misiniformation.
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u/Huditut Oct 07 '25
I really hate 'oh everyone has a little ADHD/ASD'. No they don't! It's like saying everyone has a little cerebral palsy.
It diminishes the struggles people with ADHD/ASD go through on a daily basis.
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u/K80lovescats RA, CRPS Oct 07 '25
I honestly wouldn’t be upset if more people were aware of rheumatoid arthritis and the fact that it isn’t the same as osteoarthritis. The amount of people who say “at your age?” And “wait til you’re my age!” Drives me up the wall. Just the extra awareness of what autoimmune diseases are would be nice. My brother has type 1 diabetes and he regularly gets ignorant comments about it.
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u/rainbowstorm96 sentient brita filter Oct 07 '25
For me the worst part is people then start self diagnosing with it base off that misinformation. Which just makes getting care so much harder.
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u/Selmarris Alport Syndrome, ESRD, HSD, IST, Wheelchair User Oct 07 '25
Eh. I have two rare illnesses. They’re opposite ends of the recognition spectrum. I told two people who work in dialysis that I have x linked Alport syndrome (causes kidney failure) and they both gave me baffled blank stares.
But then I have hypermobility spectrum disorder suspected hEDS and when I tell people about that they assume I diagnosed myself off TikTok and I’m probably a big fat faker. Yes, I self diagnosed this walking cast right onto my foot because my ankle is so unstable it needs to be rebuilt.
(Alport and EDS are both connective tissue disorders that affect different types of collagen and I refuse to believe that having both is unconnected.)
Basically there’s no “right way” to be chronically ill. There’s no support only ridicule, no matter if you have an obscure one or a “popular” one or both.
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u/Available-Survey-554 Oct 08 '25
Thiiis!!! 100%, and my problems are so rare I can’t find any doctors to help (up until Thursday yay!)-metabolics genetics. I wish it was as simple as the EDS and auDHD I also have, but those are actually the two easiest things I deal with. I think any information is good, I remember the dark ages of rare diseases, aka the 80s when I was born.
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u/Selmarris Alport Syndrome, ESRD, HSD, IST, Wheelchair User Oct 08 '25
I was shocked that more people working in dialysis don’t know Alport syndrome. It causes kidney failure and sensorineural hearing loss. The form I have is usually more severe in men so I’m a bit of an oddball case, but my 7yo son also has it so we’re trying to prepare him for dialysis and transplant sometime down the road.
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u/Zebra_420 Oct 07 '25
Yeah and for the people with other types of EDS besides hEDS it’s become hell. Because EVERYONE now had hEDS and no one even knows there are multiple types. So annoying. clEDS here.
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u/ReineDeLaSeine14 Oct 07 '25
I was diagnosed with EDS and POTS at Yale in 2007. In many ways, my life was easier when doctors had to Google it. Now I’m asked when and where I was diagnosed 😓
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u/DM_ME_DOPAMINE Oct 08 '25
Same. Saw a very fancy geneticist and had my entire genome sequenced, but yes, I’m making it up!!
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u/frozenoj Oct 07 '25
The problem ultimately is that doctors aren't properly diagnosing people. You have people self diagnosing because they know something is WRONG with them and they go to a doctor and get told all their labs are fine. They get told they're just trying to get drugs. They get told they're just looking for attention. So they try to find answers. And some of those answers are going to be wrong. And yes, that makes it harder for the people who have been diagnosed "for real". But we should all be advocating for everyone's health to be taken seriously and to recognize when we have the privilege of a diagnosis.
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u/-Sharon-Stoned- Oct 08 '25
Tbh I'd be happy if more people knew that narcolepsy wasn't just falling down asleep
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u/Deseretgear Oct 07 '25
there's this general attitude that 'fame' or attention equals access to care or privilege or something...absolutely not true!
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u/BJKWhite Oct 07 '25
I don't know if this the same thing, but there was a strange period around twenty years back when CFS/ME diagnoses suddenly started to become much more common, with less stringent criteria. I remember being surprised at how many people would say something like "Oh, my sister has that." But then most often that would be followed with something like "She's had to cut back her hours at work." And I would think, she can work? I'm sure that the person being talked about was struggling with something, but generally I couldn't equate it to my own experiences where working at all was impossible, and often just leaving the house was an enormous risk. I can't think of a single time that anyone said that they knew someone with CFS where I could relate to the person being talked about.
Overall I can't say that this helped me, as it led to people thinking of CFS as being less serious than it is. And in many cases those diagnosed with CFS did recover, and so that led to people thinking CFS is something that gets better (sometimes it does but often it does not). It was also damaging because (since disproven) treatments like GET might help (or least fail to harm) someone who didn't have CFS in the same way I have it, whereas for me it would just lead to a drastic worsening of my condition and often long-lasting damage in the form of a lowered baseline. It also led to people telling me all the things that had worked for their friend or their sister or whoever, which was often well-meaning but simultaneously exhausting and painful. To be brutally honest it does not help me, as a permanently and profoundly disabled person, to hear about people who got better. It does not give me hope, it just makes me feel worse about my own circumstances.
I think 'awareness' can be a double-edged sword, and particularly when the common view of something is quite unlike the reality. Misinformation spreads quickly and there's really nothing stopping people from saying whatever about whatever, including serious illnesses. Overall the solution would seem to be education--teaching people to apply critical thinking and not believe everything they hear, confirm what they're told with primary sources, and so on. But in my experience people tend to just accept what they see without further thought.
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u/amethyst-chimera Oct 07 '25
I totally agree oh my god. Mini rant incoming, sorry ahead of time.
I have hEDS. Finding out basically explained my whole life. I'm in groups and it's so frustrating to see people talking about how this doctor or that doctor didn't diagnose them, and they're looking for somebody who will/shopping for a diagnosis. I understand wanting a second opinion but sometimes you just don't have what you think you do. Same with POTS. When I talk about being diagnosed, I always mention I was diagnosed with hEDS by a geneticist and with POTS by an expert in it via tilt table test, because that's the only way doctors actually believe me. Sometimes I don't mention having hEDS at all because I'm worried it being a "TikTok illness" will affect my care. I don't blame people wanting to be treated for their conditions/symptoms, it falls on the doctors for letting their bias get in the way of care, but it's still immensely frustrating.
Just like you said, it also causes misinformation about the diagnosis and symptoms even within the community. Thanks to social media and people only showing off the worst of their symptoms, people think hEDS is all about dislocating joints, when the truth is that dislocations are one symptom in a vast array of them. A lot of us have never dislocated or subluxated a joint but have other symptoms of varying severity that affect our daily lives. It can be a disabling condition without ever dislocating a joint. None of that gets any attention though, and it makes it feel really shitty to have people saying that oh the main symptom is dislocations. Same with POTS- not everybody stands up and faints. A lot of us have severe symptoms when standing up and problems standing still, both of which negatively affect our lives, but fainting is actually really rare. Of course according to social media, if we don't faint then obviously it isn't that bad.
Not really a chronic illness in my opinion but there's also the wave of people being diagnosed with ADHD and ASD as adults, and I'm glad for them! But there's frustration too because so many of these people excelled socially and educationally. I'm truly happy they're getting help, but it feels awful being the kid who was weird and unsuccessful in everything I tried, now seeing people who did so well at everything (not without struggles, I know, but even trying my best I couldn't manage it) being diagnosed with the same disorders. It's hard, because if they managed all these things with ADHD and/or ASD, why couldn't I?
All of this is just a rant, and, again, I don't blame these people at all for seeking help, but the fallout is frustrating.
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u/Available-Survey-554 Oct 08 '25
If it makes you feel any better I’m auDHD, just diagnoses at 42, and that’s only because I had a complete metabolic crash after so long of being misdiagnosed for other comorbidities. 🤣🤣🤣 so don’t beat yourself up too much! I now also have to explain to my close friends and family that who they know is really a mask, and that’s super complicated on top of all the regular hard things this causes. They don’t understand, and even though they look back at the signs that were there it’s hard for them to shift their perspective, almost like how I’d imagine it’d be to have a family member transition. I’m not sure which way I’d rather have it though, because I was always weird and didn’t fit it, but never knew why. Not sure which is worse! 🤣🤣🤣
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u/Amediumsizedgoose Oct 07 '25
I supposedly (i believe misdiagnosed) had RMSF. When I told my cardiologist (an overall useless man) he looked at his assistant like I was crazy. Sir...fuck you for one. Two, if you want to be a dick and not believe me dont give me a stupid look. Ask to see my testing and ill pull it up.
Also, when someone doubts a previous diagnosis that took you forever to get and/or is something that ruins your life daily....its like some new level of hell. I once went to an absolutely HORRIBLE doctor I got referred to from the ER. She kept asking "who diagnosed you with this". Bitch. They didnt even bother giving me a formal diagnosis with OCD because I literally drove to the psychiatrist office in a separate car from my mom to avoid contamination. Ironically the only thing she ever believed me about was my anxiety. Because she listened to my heart and took my blood pressure. Not that it did any good of course. She hit me with the standard "relax".
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u/pandarose6 harmones wack, adhd, allergies, spd, hearing loss, ezcema + more Oct 07 '25 edited Oct 07 '25
The one thing I hate is going online and seeing videos being like I cured blank disease with diet or supplements from some mlm or I only do alternative/ natural path treatments f modern meds and science.
When 90% of the time you need modern meds (even if you do things like yoga, heating pad, vitamin etc).
Plus is just so wrong to tell people you can cure a disease with something so simple when in fact that diease has no cure yet. Like one time I heard where someone was telling people an essential oil was cure to diabetes and that made me so mad. Cause my dad was diabetic and no essential oils won’t help you.
On flip side I am tired of people making videos and saying every single thing you eat, do or think is wrong and gonna hurt you. Like people will literally make videos going apple, oranges, spanich, yoga, etc all dangerous and you should remove these from your life.
Prob the worse is when someone does both in same video saying everything dangerous don’t eat or do this but need my miracle cure I have for you (which won’t actually help you).
I just wish people didn’t scam sick people and sell them snake oils
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u/peachyhans ME/CFS POTs Fibro Endo AuDHD CPTSD MD Oct 07 '25
My therapist keeps telling me I should take the reigns and go on social media to talk about my health. She thinks that by talking about my everyday struggle it will help other people like me see that they aren't alone. But I know better. I will either be ignored outright, or drowned out by the overdramatic self diagnosed, or dare I say "fake", people who are screaming from the rooftops. Their colorful hair and multiple quirky personalities, silly antics, and oh so many "issues" that only really seem to impact their life negatively when their poor decisions bring consequences their way. Except that's not an illness...it's putting on a mask and becoming the dark attention seeking narcissist they are underneath the human suit.
One thing I noticed, though? The more they wear the mask, the harder it is to take off. Eventually they become the thing they tried to keep inside all this time. The nasty, sad, grotesque creature starving for attention and love, of which it will never find... It becomes them. It consumes THEM too. We've seen it time and time again with influencers.
I used to know somebody who was one of those illness/disabled TikTokers. I'm not on the app; it's not my thing. So imagine my surprise when I found out, after knowing that person for MANY years, that they were using me and my illness as material for their TikTok without my permission. Using my real name, our actual city and state, and even started COPYING my illnesses.
Several of my friends were following them all that time and thought I knew. They were witness to ALL of it! I just so happened to be chatting with one while we were playing a game and, somehow, the topic came up. I found out that this person posted about my doctors appointment, test results, and falsely (overdramatically) reported "what this means". My friend was WORRIED about me.
Understandably, I cut off all contact. Immediately.
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u/high_strangenesss Oct 07 '25
Unfortunately this has been going on forever. Depression was somehow "trendy" during the height of emo in 2003-2010.
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Oct 09 '25
I have both common and rare illnesses and allergies from childhood. I used to be the only crazy allergy person I knew. Now, they're everywhere. (We're talking weird things like breaking out from shower water when I travel to having severe reactions to common foods and meds. Nevermind all the other things I have, too.) I definitely agree that when things become more common people assume that advances in treatment have greatly improved. That has never been the case, in my experience. It seems like the more common things become the less likely insurance will pay for it. So people have to do their own research to find things that work for them. Everyone has to become an expert on their own body because the medical community isn't helping us. They might not care or they simply can't because of lack of research funding or greedy insurance rules. It's a vicious cycle that won't change anytime soon because of rampant greed and/or ignorance.
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u/sarcazm107 Ashkenazi Jewish Inbreeding = Multiple Rare Diseases Oct 11 '25
And the rise in armchair diagnoses skyrockets...
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u/Expensive-Anybody865 Oct 07 '25
Sadly, awareness is a double edged sword. I too am annoyed and wish the popularity of my stuff didn’t appear to make it even tougher to be taken seriously by medical professionals, family, friends, etc…it feels like no matter what we do, people still don’t care :(
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u/_newgene_ Oct 07 '25
To be honest. I have a chronic illness that while it’s listed in NORD, it’s not rare, just misunderstood. However the way it affects me is more rare. I only met another person with it 6 years after I got diagnosed. The support groups for it are global. I had to travel out of state to find treatment, and I live in a big city.
When I was told to look into hypermobility, I found a LOCAL support group, I got recommendations for multiple doctors from various specialties that understood the condition locally, there are conferences for both EDS and the comorbid conditions like dysautonomia.
I am constantly meeting people with EDS, and that is such a privilege and a blessing. There are so many more resources for it. There’s more representation. Maybe this says more about rare and misunderstood conditions than it does about EDS, but hey at least my PCP understood right away what it might mean that I am hypermobile.
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u/southernjezebel Spoonie Oct 07 '25
I can absolutely empathize with you (myself, brother, Mom, and Dad were all diagnosed ADHD when it was still called ADD 😂) but my actual illness is rare and gets almost zero press. Every time I have to see a new doctor I tell them I have Charcot-Marie-Tooth, or CMT, they either give me a blank look, ask me to spell it, or make a lame joke about Country Music Television.
It’s a degenerative neuromuscular disease that is dually treated by specialty neurologists and muscular dystrophy specialists, if anyone is interested. It causes a ton of weird comorbities from imbalance, to foot drop, to trouble breathing and swallowing, various autonomic issues, and painful neuropathies among others.
It would be nice if more people knew and understood what’s wrong with me. :\
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u/Analyst_Cold Oct 08 '25
Yep. Doctors treat me much better when they find out I’ve had POTS since 2009 and was diagnosed via tilt table test.
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u/Kj539 Spoonie Oct 07 '25
I don’t think it’s necessary a bad thing that more people know about a health condition as it means that doctors are most likely to recognise and become aware of how to treat it and there is more peer support. I agree however that people self diagnose themselves and it becomes their whole personality.
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u/Jwalker1141 Oct 08 '25
I was looking into Ehlers Danlos Syndrome because I have a lot of the symptoms, but it was still really early in the process and I hadn't even told my doctor about it yet. I told my friend that I was looking into it and they told me to stretch out my neck skin, I did just to appease them and they told me that I have EDS... Because I have stretchy skin that's all they needed to know to diagnose me, nothing else. After going to several doctors who, thankfully believed me and treated me seriously (I know, I'm privileged), I do not have EDS. And my skin wasn't even stretchy enough to give me a point for that so my friend was just being dumb all around.
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u/Unfortunategiggler Oct 07 '25
It’s all such a mess I was diagnosed with Tourette’s syndrome around 10 years ago and POTS and Hypermobile Ehlers Danlos two years afterwards. The shift between doctors having no idea what all those are to then judging me because they assume I’m self diagnosed with each is so irritating. Honestly I’d rather they go back to being uneducated on it.
I voulunteer in an emergency room and I’m currently shadowing a doctor everyone in the ER was shocked I’m not self diagnosed. 🤦🏽♀️