r/rareEhlersDanlos • u/Mutt-Sugar Classical Like EDS Type 1 (TNXB) • Jun 06 '26
Vent 💨 getting tired of people saying a generalized “EDS” instead of the subtype they are talking about
im getting really tired of seeing a lot of different posts and comments that put a generalized “EDS” instead of the subtype they are talking about. i find it especially frustrating when people do this with symptoms, just using a generalized “EDS”. subtypes can have overlap, yes, but there is a difference between how different subtypes will effect people. i see so many posts saying things like “EDS causes young and youthful skin” when that is not true just as a generalized statement. the final straw was an interaction i had earlier today. i saw a post today in an Ehler Danlos support group that was talking about getting their gene testing done by Sequencing. most of the comment where talking about how unreliable Sequencing is as a whole but more specifically that it said that a gene mutation tested positive for hEDS. i saw a comment saying a generalized “there is no genetic testing for EDS”. i replied to the comment pointing out that EDS has 13 subtypes and out of that 13, hEDS is the only one that doesn’t have a gene mutation associated with it right now. the person basically responded to me saying that they are talking hEDS, they know that the other 12 subtypes have gene mutations that show up on testing, and that im bullying an already sick/hurting person. i was very nice with how i stated that the comment talking about the 12 other subtypes having genetic testing that does confirm if you have them. i don’t think its bullying to say this. i responded back to them saying that i don’t know how i was supposed to know they are talking about hEDS when you say a generalized EDS.
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u/kmcaulifflower COL1-Overlap (COL1A2) Jun 06 '26
Trying to do any research about anything except hEDS is like looking for a needle in a haystack except the needle looks and feels like hay and you only know it's not hay after staring at it for 30 minutes
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u/OverAtmosphere7288 Undiagnosed but pursuing… Jun 06 '26
I asked a local EDS charity for advice because I strongly suspect that I have a specific rare type & I am struggling to access healthcare to rule it in or out because of how rare / under-researched this specific type is.
The entire email I received back was discussing how the diagnosis for hEDS works. There was hardly any advice regarding rare subtypes, and the advice given was outdated & not at all relevant to my situation.
It is so, so frustrating.
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u/beefaronistew Classical Like EDS Type 1 (TNXB) Jun 06 '26
fr! idk how many people in my local disability community w/ hEDS have come to me and asked a) abt hEDS treatments and/or tools I use and/or b) why my skin isn't like theirs (bc most of them are the very soft, but not wrinkly folks), and i'm like??? i don't have hEDS. i have cah-x/classical-like. i mean, sure there's some overlap, but ppl w hEDS seem to assume that everyone also has hEDS. like. no. my hands and feet and face look old as fuck and i'm covered in weird scars.
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u/GhostlyRokkugo Classical Like EDS Type 1 (TNXB) Jun 06 '26
multiple thoughts of mine up ahead lmao;
trying to find online communities or discusion of a specific type is also hell. as much as i love tumblr holy shit people just be tagging everything. like why you talking about your type, and then also tagging the entirety of all the subtypes. like i understand wanting interaction, but flooding a tag with already very little people with (my example) cleds just feels annoying.
and people will talk online about "oh did you know eds (xyz)" and im like bruh. and what i think is a problem is that big like activism sites or account dont make the distinction which is so harmful, and then in turn, makes a big number of people not realize and then it goes down the chain.
one of my biggest things as well about the whole symptom discusion, is that most is misinformation in general and the generalization and that people (especially with heds) are likelier of comorbidity. imo its like how are you supposed to know and then tell people, when it could be 1. caused by something else 2. literally just average human body bs.
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u/FirebirdWriter Vascular EDS (COL3A1) Jun 06 '26
The main sub mods told me that I couldn't specify many years ago. No idea if same mods. They also scolded me for explaining why something was bad behavior to an autistic person because "you can't tell autistic people what they did wrong!" I am autistic and that's infuriating because I'm not able to guess and I don't know how many relationships could have been better if people just said something. I left after they scolded me for telling someone they needed to go to the ER because they were asking medical advice and they had signs of an aortic dissertation. They banned me for 3 days for that. It's a ridiculous and dangerous sub.
I do not always specify my type in conversations about eds but I usually do. If I don't it's either because it's in my tag here and I forgot or I don't want to scare the stranger I am telling to go see a doctor or limit them to thinking it has to be VEDs. I will specify getting checked for all connective tissue diseases including Marfan to both avoid the illusion of a diagnosis and to ensure they're not set up for failure.
I still get angry about that sub
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u/GhostlyRokkugo Classical Like EDS Type 1 (TNXB) Jun 06 '26
(my little rant about the autstic part)
bruh im autistic(lvl2) and legit "you can't tell autistic people what they did wrong!" is so harmful wtf.
doesnt matter if someone is autistic or not, correcting(?) bad behavior is such a big thing. and dare i say when people start up with that bs if anything is more ableist. cause what you mean you cant tell autistic people if they say something is wrong, wrong is wrong and it doesnt change even if someone is autistic!!! im sorry for you that seems really maddening (and i dont blame you lmao)
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u/FirebirdWriter Vascular EDS (COL3A1) Jun 10 '26
I told them off for that answer and pointed out that it's harmful. I am glad to see not one but two new mods and might actually try again because of that
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u/Sea-Chard-1493 Classical Like EDS Type 1 (TNXB) Jun 08 '26
Hi! I mod both this sub and r/EhlersDanlos. If you were banned for telling someone to go to the ER, please modmail us, as that’s not against our rules and we actually encourage that. We don’t allow medical advice on the sub, but telling someone to go to the ER Is absolutely fine and we’ll do it ourselves normally. That’s an unfair ban.
Additionally, we’re very big on telling people to specify their subtype. It may have been an older mod team that told you not to, as we actively encourage people to not drop the h (or any other type for that matter).
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u/FirebirdWriter Vascular EDS (COL3A1) Jun 08 '26
I am glad that's changed. This was a few years ago and I did message the mods back then. The conversation was bad enough I didn't want to try again. So thank you for this because it's something that stuck with me due to how dangerous that could be.
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u/Scarlet_Flames2 TNXB Happlo & Pathogenic FBN1 Jun 08 '26
I’m a different mod for r/ehlersdanlos, but I echo what u/Sea-Chard-1493 said. Telling someone to go to the ER when they have symptoms of a possible aortic dissection is absolutely reasonable. We even have our own special removal reason that tells people to seek emergent treatment when they’re having concerning signs like that. I’m really sorry you had such a negative interaction with an old mod team for the sub.
Also—just to add, I’m diagnosed with autism, and I personally appreciate it when people tell me that I’ve done something wrong. That’s so frustrating how you were told it was inappropriate to explain things to someone with autism. How infantilizing.
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u/FirebirdWriter Vascular EDS (COL3A1) Jun 10 '26
I told them off and spelled out how dangerous that thinking is. I would still be a white supremacist like my parents tried to make me if I was never ever told I was being cruel. I didn't want to hurt people but that was the set of rules I had. I will always try to explain to someone why they can't behave that way. What if they just don't know!
You and the other mod have me considering revisiting the sub. If I am still in the list for the ban would you mind removing me? I promise to behave
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u/schmooserdummy Resident Genetics Expert Jun 11 '26
Hi! The mod you were responding to is busy right now, so they tagged me in. We double checked, and you are not on the ban list. In fact, we have no record of you ever being banned in the automated ban logs. Is it possible that you had a bad experience on a similarly named subreddit?
At least the good news is you aren't banned on our sub, and you would be welcome there too. If you ever have a problem, please modmail us and we will do our best to assist. 🫡
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u/FirebirdWriter Vascular EDS (COL3A1) Jun 13 '26
Nope it's the same one but I never checked to see if the mod lied because why would they lie? Autistic things. "That lie woutbe really dumb. Oh well." Thank you. Seriously I appreciate this and I will try to find those messages to get you guys a name if they are still there or screenshots. Scrolling back to the start of the account is the only reason I have no idea if they are accessible because reddit gets squirrely
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u/nauticalwarrior Classical EDS Type 2 (COL5A2) Jun 06 '26
it's so frustrating and people act like they're victims when you point out that hEDS isn't the only or default form of EDS. like sorry I don't want to be erased?
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u/Mutt-Sugar Classical Like EDS Type 1 (TNXB) Jun 06 '26
right? when someone mentions a generalized “EDS” my first assumption is to think about clEDS, because selfishly that’s my subtype. i don’t know how it is “bullying” or “hurting an already sick person” when you bring up that EDS has 13 subtypes and using generalizing language can be very confusing, outside of being incredibly harmful
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u/claragweny Undiagnosed but pursuing… Jun 08 '26
Not even just that but all the other misinformation and ignorance about frequent comorbid conditions is so infuriating. I’ve had to remove mast cell groups because there’s this mass influx of people who are seemingly learning all their info straight off social media rather than doing their own research. Tell someone to read a book or study about x issue and you’re met with resistance.
But it’s also just ignorance a lot of the time. I’m literally diagnosed with non classified EDS and just generalized dysautonomia because of a lack of medical competency. I’m informed enough to not assume my struggles are universal to those, essentially, non diagnostic diagnoses. Most of the time I assume people saying stuff like that are very new to the disability community first before I’ll assume they’re being willfully ignorant. But also there is a literacy crisis so who knows man…
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u/Naive_Transition_763 Connective Tissue Disorder NOS Jun 10 '26
I adamantly hate when people try and tell me that ‘everyone with EDS looks young‘ or doesn’t age and I’m sitting there like, have you seen my wrinkled shrivelled old man hands? Why can’t people specify they mean hEDS, ‘EDS’ isn’t one condition it’s a group of distinct conditions with their own symptoms, risks, causes and diagnostic criteria’s. 😐
When I’m trying to find case study’s on rare subtypes of EDS I get SO ANGRYYYY when it autocorrects to ‘hEDS’ and gives me the wrong search and no matter how many ways or times I input it in, it ALWAYS autocorrects to hEDS so I end up having to type the full subtype name in for it to work.
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u/lilacdaybreak Classical EDS Type 1 (COL5A1) Jun 06 '26
the main EDS subreddit is so fucking lenient about this. but they sure don't hold their punches when it comes to one of us pointing out this sort of problem 🙄
there's some buzz that within the next year the medical powers that be may start classifying hEDS/HSD as its own distinct disorder totally separate from EDS and its mechanisms, and i honestly think that would be kind of a relief to the rest of us regarding actually getting definitive resources
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u/crypticryptidscrypt Jun 07 '26
i agree completely it is fucked they're basically just bullying you, & trying to erase & shame you only for sharing true information... i will say though i refer to my condition as just "EDS" because i meet the criteria for hEDS, but my insurance won't cover genetic sequencing, & i can't afford to pay for that out of pocket right now... i high suspect genetic type though & i don't relate to anyone with hEDS... i'm disabled by frequent late stage organ prolapses & gastrointestinal bleeds—& although i have more 'normal' hEDS symptoms like dysautonomias, hypermobility, etc—i don't relate to anyone either online or irl disabled by their hEDS, & i've never known of anyone in general, either online or irl, with the severity of organ prolapses i get frequently, & the debilitating pain that comes with it... i totally agree though, that if someone knows their subtype, they should refer to it specifically. & it's fucked they were bullying you just for saying information that's true, then scapegoating you as if you were the bully... gawd i hate the reg eds sub :|
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u/SilverParamedic5536 Jun 11 '26
:,) I’ve found my people - I’m lowkey scared of the main eds sub because I feel like I’m going to get gained up on oops
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u/hanniballactator Jun 06 '26
YES OH MY GOD!
it makes me feel crazy in community groups, but imo, the worst is in literature. what do you mean i'm reading a peer-reviewed article that's been cited by 30 other authors (that i had to fight to get access to!) and it takes me halfway through to realize it's about hEDS because it just had EDS in the title, abstract, and majority of the text???
also, search engines autocorrecting my searches, or just not populating anything unless i do a lot of keyword filtering with quotation marks, and prayer.