Ehlers-Danlos Syndrome, health

EDS Awareness Month – An Open Letter

Since May is EDS awareness month, I thought I would write an open letter to those who don’t know or understand much about it.

Dear friends, family and even strangers, below are some things that I want you to know and understand…

I am scared, terrified in fact as I have no idea what the future holds for me (well except for pain, dislocations and more pain…). Will I end up in a wheelchair or I will I be one of the lucky ones? If I suddenly become quiet and withdrawn, please don’t think I’m upset or annoyed with you. I am just trying to reconcile my fears. Yes, I am angry but not with you. I am angry because EDS has taken so much away from me. At the age of 23 I can no longer do a number of things I used to love doing and I struggle to complete some of the simplest tasks. So please know that if I appear angry, it is this horrible condition I am angry at, not you.

Please don’t tell me that you know how I feel, don’t offer me sympathy; I don’t want your pity – I’m stuck with this condition for the rest of my life. I really don’t want to be pitied for all those years. All I and every other EDS sufferer wants is your support and understanding.

I know that sometimes I look perfectly healthy but please remember that looks can be deceiving. Please understand that EDS is very much an invisible illness. Even on the best day, I feel like you do when you have the flu (exhausted, achy and sore). Please keep that in mind and understand the difference between being “happy” and “healthy”.

When you’ve got the flu you probably feel really down because of the exhaustion and achy muscles, but I’ve been sick for years (EDS is genetic, meaning that I’ve had it from birth even though I was only diagnosed 5 years ago). I cannot allow myself to feel down and miserable every day or I would never get anything done. Therefore, I work hard at being happy despite all the pain and exhaustion.

If you’re talking to me and I sound happy, it’s because I am happy! Yes, I may be exhausted and I may be in agony but what’s new? Please don’t tell me I “sound better” – I’m not better, I’m just happy. If you want to comment on my happiness, please feel free but please don’t tell me I “sound better”.

Please don’t bombard me with stories of how your family friend cured their joint problems by taking herbal remedies or other cures. I appreciate you trying to help me, I really do but I have spent so long trying various things, which just make me feel worse. Unfortunately, there is no cure for EDS and until they find the exact gene, which causes it and technology and medicine get to the point where something can be done, there will never be a cure.

I want you to know that the pain and instability from EDS changes. Please don’t confront me when I’m worse by saying “but you did it before!” If you want me to do something, ask me and I’ll tell you whether I’m able to or not. Just because I walked up a flight of stairs yesterday, doesn’t mean I can do it today. Yesterday my neck was hurting, today my knee is and who knows what joint will be causing me problems tomorrow.

Please also understand that being able to stand up for ten minutes doesn’t always mean that I can stand up for an hour. It’s highly likely that those ten minutes has exhausted all of my resources and I will need time to recover.

Imagine an athlete after a race. They wouldn’t be able to repeat that feat right away either.

*Repeat above paragraph substituting “race” with “sitting”, “standing” “talking”, “breathing” and so on… it applies to EVERYTHING that I do.

Similarly, the symptoms of EDS vary, sometimes suddenly. This means that I may need to cancel an invitation at the last-minute, if this happens please don’t take it personally. “Getting out and doing things” does not make me feel better, in fact it often makes me worse. Life with EDS means constantly juggling things to ensure I can still do things I enjoy without making myself worse and unfortunately that does mean having to cancel from time to time.

Please understand that I cannot spend all of my energy trying to recover from a condition with no cure. EDS is genetic so unless a miracle happens and I can change my genes, I cannot change my health. With a short‐term illness like the flu, you can afford to put life on hold for a week or two whilst you recover. However, I can’t put my life on hold to recover from a condition with no cure. Therefore, I use every ounce of the limited amount of energy I do have on having a life and enjoying myself to the best of my ability.

This does not mean that I’m not trying to get better. It doesn’t mean I’ve given up. It’s just the reality of life when you’re dealing with EDS or any other chronic illness.

Finally, please remember that despite everything I am still the same person I was before I was diagnosed with this. EDS might affect the whole body but it doesn’t affect my personality. I can still laugh and cry, I can still love and hate. I am still me – I am not my disease! Please continue to love me for who I am just as you did before. Everyone (healthy or not) needs love, understanding, support and sometimes even a hug and I’m the same but most importantly, I need you to understand me.




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