Dear Ehlers-Danlos Syndrome: A Letter From Your Host

Dear Ehlers-Danlos Syndrome

I have been living with you my whole life, but you started to show your ugly face 5 years ago. And during all that time I couldn’t really decide what the worst part about you is.

But today I think I know. 

What I really hate about you is that you make my body go from feeling ok to being terribly sick and bedridden in just one minute, without me knowing what I did to upset you.

You like to punish me for every effort I make to live a normal life.

You even completely redefined the word “normal“ for me. Now being normal does not mean being symptom free, it only means symptoms are small enough to be ignored for a while and to function, but always knowing that this will be very exhausting and you will make me pay for days afterwards.

Usually on those rare good days, my mind needs to recover from the pain and stress you are causing it. I know that you obviously do not care too much about my mind but it would be nice if you just allow me some of those moments without any regret afterwards.

Maybe you also think I am way stronger than I feel at the moment because otherwise it wouldn’t make sense that you abruptly end those important days of mental and physical recovery.

Your unpredictability forces me to cancel get-togethers with friends, prevents me from taking on functions that require responsibility and makes it absolutely impossible to plan ahead.

And what makes it even more unfair is that every good day gives me so much hope that I actually start planning things again and feel like finally I am making some positive progress.

But you do not like to see hope and optimism do you?

At least it does not feel like you would allow me even just a second to imagine a life without you.

Yes, I do appreciate what kind of person you made me and I know I learned many things from you too. I even would go as far as saying that you made me realize who I really am. But today, I can only see the monster that takes away so many things I love.

It would be only fair if you could appreciate the effort I am making to feel better. Don’t you think I deserve a little bit of mercy sometimes. Just enough to be able to recharge my battery?

I have learned to accept you, I live with you every single day. But there are moments when I just can’t, when I feel treated so unfairly and when I ask myself what I did wrong to deserve you. 

I am usually not talking about the bad things in my life, but I guess it is important to show that sometimes there are more things I hate about you than appreciate.

Tomorrow will be a new day, a better day and hopefully a more optimistic day.

But for now I need to let you now:

EDS, you really suck as a roommate!

Your host,


IMG_4825About the Author: Karina is a bright young woman living in Germany. She has a blog, and many of the posts she writes are in her second language, English. Check it out here. You can read another Patient Worthy post of hers by clicking here.

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