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17 Things People With Ehlers-Danlos Syndrome Wish Others Would Stop Saying

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Not many people know what Ehlers-Danlos syndrome (EDS) is, and even those who have heard of it may not know what to say to someone who lives with the condition. People might think they’re being supportive when they ask you to demonstrate “that bendy thing” or tell you that “you’ll surely feel better soon,” when really those kinds of comments can make you feel more misunderstood.

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

We asked our Mighty community with EDS what they wish people would stop saying to them and what people should say instead that would really help them feel heard and loved. Even if you aren’t sure what EDS is, there are still so many ways to support your loved one as they fight the often-invisible symptoms.

Here’s what the community told us:

1. “’But you don’t seem like you’re in pain.’ I’m in pain all day every day. It’s normal. There’s no point in talking about it. So when I do complain about the pain, you know it’s really bad that day. Just because I don’t talk about it, doesn’t mean it doesn’t hurt. Because it does.”

2.I’ve spent my whole life with people telling me what a klutz I am. I’d really rather have had them listen to me when I said something like, ‘Wow, my ankle just folded itself on flat ground,’ or ‘I don’t know why my knee did that but it hurt like hell.’ Then maybe I wouldn’t have believed it was all in my head.”

3. “‘Have you tried…’ Yes I have! Would be very happy if anyone just Google EDS before suggestions about diets, therapy, painkillers and so on.”

4. “‘Oh, as long as you lose the extra weight, everything will be fine and you will have a perfect normal life.’ This came from an ER doctor. Pretty sure EDS doesn’t work that way. What I wish medical people said: ‘I fully understand that what you’re experiencing is difficult and emotionally draining, but I will do everything I can to help you.’ (Those were actually the words of another ER doc that brought tears to my eyes.)”

5. “‘You can’t do that. Go sit down.’ Excuse you? You don’t know that I can’t do that. I might be having a good day today. How about: ‘You’re up to doing [insert activity] today? That’s great!’”

6. “My aunt was diagnosed with EDS by a specialist; another physician told her he had never heard of the disease and referred her to a psychiatrist. I think if you’re a licensed physician and haven’t come across a particular disease, you should tell your patient you will do some research and do anything in your power to help instead of assuming that they’re emotionally unstable.”

7. “‘I feel so bad for you!’ Please, don’t! It makes me who I am and I’m proud of that! I’d rather you say, ‘I’m empowered by you and how positive you stay in the face of a crappy situation.’ I hope that’s what they really mean!”

8. “This one might be one that some people don’t mind but: ‘Whoa, can you do that bendy thing again?’ Not really sure what I’d rather they say. Maybe ‘How can you do that?’ so I can explain EDS to them. Chances are if they say that, I’ll do another ‘bendy thing’ as example, while explaining what the illness does to my body. Just asking for me to dislocate my thumb or knee for no reason makes me feel like a freak show, singled out, and annoyed.”

9. “’Get well soon’ doesn’t sound nice because I’m never getting well. Instead try, ‘Feel better soon’ or ‘I hope you’re in less pain tomorrow.’”

10. “What they say: ‘At least you know what’s wrong,’ and ‘It’s not serious.’ What I’d like them to say: ‘I understand that you are in pain and I empathize with you. If there is anything I can do, don’t be afraid to ask.’”

11.I wish people would stop judging me when I go out drinking. Yes I’m in a wheelchair but I’m still 23 years old. I wish people would stop saying, ‘Do you not come out often because you’re in a wheelchair?’ Instead say, ‘It’s nice to see you out!’”

12. “Stop saying: ‘You look healthy/well/better.’ Instead: ‘You’re looking lovely today but how’re you feeling?’ I wish people would stop commenting only on what they see and start appreciating me as the whole person I am, syndrome and all.”

13. “‘Oh, but you’re too young for all of that.’ It would be so nice if they said something like, ‘I would like to learn more about your illnesses so that I can better understand.’ Or, ‘What are some ways that I can support you through this?’”

14. “‘I have aches and pains some days, too. You just got to push through it.’ What I wish they’d say: ‘I can’t even imagine aching every single day with no end in sight, how do you do it?’”

15. “‘You’ll be better tomorrow!’ For some reason this always makes me uncomfortable, because yes, tomorrow might be easier, but I can’t guarantee that, though I can guarantee that I definitely won’t ever be ‘better.’ I think it’d be less jarring if somebody said, ‘I understand that today sucks, but I hope it will be more tolerable soon.’”

16. “Stop saying, ‘It can’t hurt that much’ or ‘You should just get over it and go back to work’ or ‘I’ve never heard of it, you’re probably making it up.’ What I wish people would say is… ‘I don’t know about much/anything about that condition, how can I find out more about it?’”

17. “‘Have you tried essential oils?’ or ‘Have you gotten a second opinion? That sounds made up.’ I wish they would ask, ‘What treatments do they recommend?’ or ‘What can I do to help?’”

What do you wish people would and wouldn’t say about your EDS? Share in the comments below.

 17 Things People With Ehlers-Danlos Syndrome Wish Others Would Stop Saying
Originally published: January 24, 2017
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