themighty logo

14 ‘Harmless’ Comments That Actually Hurt People With Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome (EDS) is a chronic illness that causes “a distinct problem in connective tissue,” according to The Ehlers-Danlos Society. As connective tissue is found throughout the entire body, EDS can cause a wide range of symptoms, including joint hypermobility, skin hyperextensibility and tissue fragility.

When you have a chronic illness like Ehlers-Danlos syndrome (EDS), it can be common for other people to make comments about your health. Sometimes these comments come from loved ones, sometimes from doctors and sometimes even from complete strangers.

Though they may be well-intentioned, these comments can sometimes be more hurtful than helpful. Hurtful comments aren’t always obvious and people may not even realize their comments are insensitive at the time. For instance, when someone comments that your disease isn’t “that serious,” or that you “don’t look sick,” it can make you feel like you are being “dramatic,” and be hurtful and invalidating.

That is why we asked our Mighty community to share some “harmless” things others have said to them about their EDS, and how it affected them. You never know what kind of impact your words can have on someone else, especially someone who is living with a chronic illness like EDS.

We never want anyone who lives with Ehlers-Danlos syndrome to feel like they don’t matter and that their issues aren’t valid. Hopefully this list will help others to understand just how hurtful their “harmless” comments can be so that we can change the way we speak to, and about, those who live with EDS.

Here is what our community shared with us:

1. “Getting a diagnosis doesn’t matter because there’s no cure for EDS.”

“When I was still in the process of getting diagnosed, I had a doctor tell me that ‘getting a diagnosis won’t change anything because there’s no cure.’ I already knew that, I wanted a diagnosis so I could finally feel validated after years of multiple doctors saying ‘oh it’s in your head’ or ‘you just need to exercise more and your pain will go away.’” – Michelle K.

“’Sorry. Nothing we can do since it’ll probably just hurt you down the line, and there’s no cure, anyway.’” – Jennifer D.

2. “Just wait till you’re my age.”

“‘You’re only 19.’ ‘Just wait till you’re my age.’” – Hannah K.

“‘Imagine how you’ll be at my age!’ Usually said by someone in their 70s.” – Chrissy L.

3. “I totally understand what you’re going through.”

 

“When I mention my joint pain (I don’t speak about my chronic pain much due to the stigma) and someone says ‘oh my (insert one joint here) hurts too, I understand you.’ Thanks but just because your (one joint) is hurting you right now, doesn’t mean you truly understand chronic joint all-over pain that Ehlers-Danlos syndrome comes with.” – Kaiden H.

4. “You don’t look sick.”

“‘But…you don’t look sick!’ By far the worst one I receive. I know they’re saying it out of love, but it’s really just insensitive.” – Jessica M.

“‘You look great!’ Do you know how hard I had to work to get out of bed, get ready, and look somewhat presentable? It isn’t easy. Glad to know I look fine but it doesn’t change the fact that I feel like crap and battle every day.” – Ashley D.

5. “Wow, I wish I could stay home and sleep all day.”

“‘I wish I could stay home and not have to work!’ Yeah because it’s so ‘fun’ to be in pain every day and have one injury after another. Not to mention all the doctor appointments and physical therapy every week as well as other treatments.” – Bailey T.

“‘Wow, not having to work anymore must be great!’ No, not able and not having [to work] are two different things.” – Gaye D.

“‘She is lazy and has to sleep all the time.’ This was said by my young niece. It was not meant to be hurtful. It was just her way of explaining the fatigue that comes with EDS to a friend who was curious why her adult aunt needed a nap. When she was old enough to understand, I explained to her why calling a disabled person lazy is hurtful and she understood completely.” – Michelle K.

6. “EDS just means you’re super flexible.” 

“‘So you’re like super flexible? That sounds like a cool disease to have if you’re going to have one.’” – Amy T.

“‘It just means your joints go further than normal, but it doesn’t cause pain. See, even my finger bends back.’ – my rheumatologist.” – Caitlin P.

“‘I can hyperextend too!’ … Hyperextending and flexibility are very different from having a genetic disorder that affects your collagen. Also, it’s really invalidating to be told it’s my fault for dislocations/injuries when they occur so easily from simple tasks.” – Cristina M.

7. “Be grateful it’s not something ‘serious.’”

“A doctor once told me that EDS shouldn’t be causing me pain, and that I should be grateful it was ‘a fun one’ and not ‘something serious.’” – Michelle R.

“After explaining what Ehlers-Danlos is and my daily struggle with pain, GI issues, fatigue, depression, anxiety, and subluxations/dislocations, someone important to me said, ‘it can’t really be as bad as you make it out to be,’ completely dismissing my feelings and pain. I felt like melting into a puddle of tears and disappearing right then and there!” – Suzanne D.

8. “I wish I could lose weight as easily as you.”

“Prior to diagnosis and treatment, I became so ill with EDS and comorbids that I lost [a lot of weight]. It was very stressful for me, my family and medical team. I have had three separate people tell me that chronic illness was ‘working’ for me. You know… because thin is ‘way more important’ than healthy.” – Jenny R.

“‘I wish I could lose weight as easily as you.’” – Charlie T.

9. “It’s all in your head.”

“The most hurtful thing ever said was by a family member. ‘It is not my problem you are sick. You have all these doctors because there is nothing wrong with you. It is in your head.’” – Shanin B.

“‘It’s not really pain, it’s just your brain telling you have pain.’ Yeah, because my subluxations and dislocations don’t cause pain?” – Karly B.

“‘You’re always hurting and you’re too young. This must be all in your head, have you seen a counselor?’” – Samantha D.

10. “Only thin people can have EDS.”

“‘You’re too fat to have EDS, it’s only for skinny people.’ Yeah… medication side effects and inability to move from the EDS.” – Tori M.

11. “You should try ____.”

“‘You should try being more positive.’ I’m usually very positive, so when people tell me that I basically just have to assume it’s a polite way of telling me they don’t want to hear about what I actually have to deal with. It hurts because it once again lays the blame at my feet for a genetic condition I have no control over. As though my attitude is somehow going to fix my genetic make-up if I would only try harder. I try hard every single day, or I wouldn’t be here.” – Zanne B.

“‘Just get up and get some exercise. You will feel better.’” – Melody J.

“Did you try turmeric/steroids/cannabis/magnesium/yoga/emdr/psychotherapy/whatever? I appreciate the desire to help; it’s just exhausting to get it all the time, and really, if I just explained my condition to you and you never heard about it before, what are the odds you’d actually think about a relevant advice I didn’t try yet?” – Giri B.

12. “You’re still sick?”

“‘I’m so glad you’re pain-free today!’ Sent to me in my inbox, after I’d said I’d done some decorating… I’m never pain-free, I’d told this person this, countless times. It’s like they’re intentionally trying to upset me.” – Izzie W.

“‘Get better soon.’ It’s like a gut instinct for people to say this when someone is sick, be it with an acute illness or a chronic one. Some people know what ‘chronic’ means and say it anyways…mostly out of habit. Then, there are people who legitimately don’t seem to understand what ‘chronic’ means. Those people tend to get disappointed when (surprise, surprise) I’m still the same or worse depending on the day. I want to shake them by the shoulders and scream, ‘It. Is. Permanent. There is no better. Stop telling me to get better. Stop.’ They will never understand how badly I want to just be better, to not be in pain any longer. Then again, I believe at this point that it’s not because they can’t, but because they don’t want to.” – Mikki I.

13. “You don’t really need that wheelchair, do you?”

“Being told that you shouldn’t use a wheelchair and to work on maintaining mobility, because ‘once you get into a wheelchair you will never get out.’ As if injuring yourself and needing days to recover and being mostly home bound as a result is preferable to being able to go to appointments and the store and other places with only minor injuries and fatigue.” – Melissa D.

“Friend: ‘Do you ever feel bad for using your [disability] placard?’” Crystal F.

“‘You don’t really need that wheelchair do you?’ Said by a now ex-friend. It really hurt because I thought that they understood what was happening.” – Natalie C.

14. “You’ve got to try harder.”

“When I was walking with a few fellow medical students, I quickly got behind since I couldn’t keep up. Instead of making a fuss, I decided to not say anything since I already felt left out. One of the group noticed me falling behind and just said, ‘you’ve got to work harder.’ Less than a year later I lost the complete ability to walk, but that day my faith in med students/doctors was shattered just because of that one insensitive remark.” – Larissa D.

“’You’re funny, you know that? I don’t understand why you do things the lazy way when it would be quicker to do it the right way.’ I’m sorry I don’t want to do the stairs. They hurt more. I’m sorry I don’t want to pick up the heavy thing more than I have to. It. Hurts.” – Rhiannon B.

“’Try your hardest not to dislocate.’ Yep. Like I choose to pop my joint out.” – Stacey G.

People may often make remarks to those with EDS without realizing how insensitive these comments can be. Though your comment may be well-intentioned, take a moment to ask yourself if the comment will help or hurt. If you’re not sure, check out some of the following stories about comments people with EDS want (and don’t want) to hear.

If you have EDS, know we see you, and our community is always here to support you.