Published: 20/06/2018


by Danyelle C.

I found out I have hypermobile Ehlers-Danlos syndrome (hEDS) a few months ago and I am still having trouble accepting it. I was diagnosed with Chronic Fatigue Immune Dysfunction (CFIDS) and fibromyalgia years ago and have long ago accepted those conditions. The part that makes hEDS different is that no amount a physical therapy or pain medication will allow me to function as normal. Even worse is the fact that I can no longer just push through the pain without risking serious injuries. I have gotten very good at ignoring pain and fatigue but now that pain means something is causing damage that even if it doesn’t affect me now may affect me in the future. It doesn’t help that it seems like over the past year my body has just given up. I am 27, I shouldn’t need to put braces on all my joints just so I can go grocery shopping.

My mom tried to make me feel better but I still think she lives in a world where I will magically get better. I know she tries to understand and sympathize and even though she shares a lot of the same issues it just doesn’t help much. She is my mother she HAS to see me a certain way and she HAS to accept me. The rest of my family is pretty much clueless, they don’t call me a faker or anything but they so clearly don’t understand or have any idea what I am going through. Even though she can’t make me feel better herself she did know what I needed. She helped me connect with other zebras, closer to my age.

Thanks to a great community of other Zebras sharing their experiences and talking to me about my worries the hopelessness has been getting much better. They can’t fix me but at least they help me look on the bright side and make me feel like I am not alone. I think that was the biggest part, making me feel like I am not alone and that I don’t have to be isolated. I know there are people out there who understand what I am feeling and won’t give me false hope.

My friends are another great support system that has been helping me to be able to accept this; they don’t see me any differently, I could turn into a purple alien and they would just be like “pretty color” and still see me as me. I told one friend that I was a zebra and all she had to say was, of course,e you’re a Dizzy (my nickname). It is nice to know that I have friends who will listen and be there for support but not judge me.

Since I have been able to accept having hEDS more I have found that I am excited to be getting the braces I need to be able to move more freely. I have also begun training my service dog to help me get my braces on and off as well as helping me in and out of my clothes, a task made much harder with the braces. I know this will help me be more independence, something I have always hated giving up.

I guess you could say that I am not happy about having all these issues but I am starting to have hope which makes the difference between depression and acceptance. I have no idea what will happen in the future but I am now ready to face it knowing I have a net of friends and fellow zebras to lift me back up if I fall. It also helps that I know I have my loving service dog to stand beside me and eagerly help me get through everything from normal life to hospitalizations. It is really hard to be depressed when you have a dog acting like a goofball licking your whole face. I am also now at a point where I realize I can help give others hope.


Disclaimer: Each story submitted to The Ehlers-Danlos Society for this ‘#MyEDS/#MyHSD’ anthology is published “as-is,” with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors—and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

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