When I Was Challenged to Share How I Really Feel About My Ehlers-Danlos Syndrome

One week ago, a writer asked me if I was able to pack my feelings about my disabling condition in only 200 words. My emotions about how it feels to be young and chronically ill, irrationally and without any facts, without thinking about how I might present myself to the public.

Me? Appearing weak? Was I able to lift the curtain and talk about irrational fears? Could I risk making myself this vulnerable?

It is very hard to provide access to one’s deepest inner world, to point out every wound of the soul, if you already got hurt. Well, usually I like challenges. What I do not like are emotions. Especially those that I have been carrying around as a burden for years and only partially digested because they hurt too bad.

But maybe, this is exactly the right moment. Maybe right now, here, it is the time to talk about it.

So how do I feel, right now, as a 30-year-old Ehlers-Danlos patient?

It is not only this one feeling I have, it is more of a combination, sometimes even contradictory emotions at the same time.

I am…


Happy about…

…finally being diagnosed

…knowing the enemy

…getting support from completely different people

…recognizing who is a friend

…being able to appreciate the small things in life

…being alive

…discovering new talents

…being able to accept new challenges


There is the fear…

…about the future and what might happen next

…about losing even more people in my life

…of dying

…that I will not be able to find coping strategies for the rest of my life



…from the burden not to know what has been torturing my body for years, what made me this sick

…because I know, I do not have to prove that I am sick anymore



… about standing in front of another downhill episode and not to know how I will overcome it this time

…when doctors do not want or cannot help

…if a new problem arises but there are still ten unsolved ones

…that I never know if my condition will get a little better again or if this rainy season will last forever



…by my strength

…that I learned how to survive and fight

…that I can be happy, even with my limitations



…about my weaknesses

…that I am crying again

…about my inadequate performance

…about being a disappointment to other people – because of absence, being not there for them

…about the bad friend I seem to be sometimes


Thankful for…

…new ways that opened up

…new friendships

…love, relationship, family

…the things I am still able to do

…the help I got and will get

…the possibilities I still have despite illness



…about the decision that I will not have children

…about not being able to work a regular job

…that I always have to find a new sense in life

…that my past and healthy me missed so many chances without even knowing

…about how many moments I did not appreciate; how much great things I got without deserving

…about everything I lost because of EDS

…about the ignorance I sometimes experience



…from the pressure that I always have to be the best, the fastest…

…from being fully competitive



…about all the bad things that had to happen to me

…that despite having a diagnosis some people doubt it and call me lazy

…because it does not stop, there are and will always be new problems



…to write about my life

…by others, to master my life and strengthened to stay on this path


Envious of…

…people who are healthy and do not appreciate it. People, like I was in the past, that go carelessly through their lives without expecting any consequences

…patients that are able to get the medical help I would need

Ashamed of myself for having such ugly thoughts sometimes


Dissatisfied with how my life might be tomorrow


Satisfied with how my life is today.

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