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14 Ridiculous Things People Have Said About Ehlers-Danlos Syndrome

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If you have Ehlers-Danlos syndrome (EDS), you’ve likely heard some comments about your condition that make you think, “Seriously?!” Even though our doctors and loved ones generally have good intentions, sometimes a lack of understanding causes their questions or advice to completely miss the mark. It can be frustrating and hurtful when someone doesn’t really listen or try to understand – and this can unfortunately result in uninformed and insensitive commentary. Sometimes though, the things people say are just so ridiculous (and so far from the truth) that they almost verge on comical.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

We asked our Mighty community to share some of the ridiculous things they’ve heard people say about Ehlers-Danlos syndrome in the hopes of correcting common misconceptions and raising awareness about the realities of this condition… while maybe having a small chuckle at just how silly and off-the-mark some of these statements are.

Here’s what our community shared with us:

1. “Ehlers-Danlos is just a fancy way to say ‘flexible.’”

I had someone tell me, ‘Ehlers-Danlos is just a fancy way to say flexible and doesn’t really hurt that bad’ after Googling it.” – Emmett D.

“‘Doesn’t that just mean you’re double-jointed?’ No… it does not.” – Alexandra B.

“‘It just means you are a bit bendy, that’s all’ – said by my general practitioner. This was the response I got after I told them how much pain I was in, just a couple of months after diagnosis and while under physio. I wish they’d made me feel validated like the doctor that diagnosed me, and tried to understand.” – Pandora L.P.

2. “You should just exercise more.”

I had several doctors tell me that my joint pain would improve if I exercised and lost some weight. None of them seemed to consider the possibility that I had gained weight in the first place because it hurt too much to exercise!” – Ella B.

“‘Just get out and exercise. That’ll toughen your body up, and you won’t have so many problems.’ That might be a good idea if it wouldn’t cause further injury, but it does.” – Darcey R.

3. “You must be used to it.”

“‘Yeah, but dislocations/subluxations won’t hurt you now, you must be used to it.’ …Ehhh no, always sore.” – Danielle L.

4. “Can you just like… take collagen supplements?”

“‘Can you just like… take collagen supplements?’ They meant well. I think people look for fixes because the realization there is no easy fix is painful and scary.” – Molly R.

5. “Your joint can’t just dislocate by itself.”

“‘Oh no, your hip can’t just dislocate by itself. It takes a huge impact like a car accident or cheerleading fall.’” – Sarah B.

“‘(insert activity/task) won’t make ____ dislocate!’ I wish they knew how easy it is for me to dislocate, and no matter how simple the task seems, if I say it will dislocate something I’m not exaggerating.” – Chelsea S.

6. “Isn’t there a cure?”

“‘Isn’t there a cure?’ Yes, genetic disorders are always curable.” – Karrie A.

7. “I wish I was that flexible.”

“‘I wish I was as flexible as you are.’” – Crista R.

Oh I wish I was hypermobile, must be great to be able to bend and touch the floor… EDS can’t be that bad.” – Abi H.

“‘Oh, it’s so cool you’re that flexible.’ I wish the person who said it to me understood how many other effects EDS has on the body like the easy injuries, poor healing, daily chronic pain and dislocations/subluxations. It isn’t just being hypermobile.” – Alexis M.

8. “Maybe you just need some more sunlight.”

“‘Maybe you just need some more sunlight. Try going to a tanning bed. That should make you feel better.’ As if tanning beds will fix my collagen and change my genes.” – Mahala H.

9. “Just try not to overextend anything.”

“‘Just try and don’t overextend anything. Learn to not pop joints out.’” – Stacey G.

10. “If you just tried ___, you’d be better in no time.”

“‘It’s just all the crappy food our society eats these days. If you just eat an organic, raw diet, you’d be better in no time.’ Yes, why didn’t I see that before? That will totally fix my faulty DNA.” – Kaye E.

11. “EDS doesn’t cause pain.”

Ehlers-Danlos syndrome doesn’t cause pain. You have rheumatoid arthritis.” – Mekenzie T.

“I had a doctor tell me yesterday that EDS doesn’t cause widespread chronic pain and had to explain that I am, in fact, in very serious pain all of the time. He looked confused until I clarified that a symptom of EDS is myalgia (muscle pain) from muscles attempting to freeze joints to stop them from subluxing.” – Naoma B.

12. “You’re too young for this.”

“‘You’re too young for this.’ I am well aware that I’m only 30 and my body acts more like a 70-year-old. Yes, I’m already falling apart.” – Megan M.

“‘You’re too young to be sick. This isn’t a real disease.’ Said by my many doctors because I’ve been diagnosed with this since I was 12. Unfortunately genetic disorders do not age discriminate.” – Tiffany B.

13. “I bet your spouse likes that.”

“‘Wow, bet your spouse likes that,’ referring to being flexible. Oh yeah, dislocations and subluxing is really sexy, totally sets the mood.” – Alice N.

“‘You must be very flexible!’ *wink wink* Yea, I think my husband would prefer that I didn’t dislocate all the time… thanks for the awkward vibes though!” – Rebecca N.

14. “Are you better yet?”

Repeatedly… from the same people… ‘Are you better yet?’” – Staci H.H.

“‘You look great today! So you’re all better? Cured from your problem?’” – Aimée R.

If you have a friend or loved one with EDS but aren’t quite sure what to say or how to support them, check out “5 Things I Need From You as Someone With Ehlers-Danlos Syndrome” or “What to Say (and Not Say) to Someone With a Chronic Illness” for some ideas from our community.


Originally published: March 2, 2018
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