What I Wish I Had Known About Living With EDS

9 Things I Wish Someone Told Me About Living With Ehlers-Danlos Syndrome

Being sick and not diagnosed is a time of doubt and uncertainty. But going back to before I was diagnosed, the one thing I wish I was told was that having a diagnosis doesn’t make your life any easier.

I wish there was a handbook on “How To Be A Successful Spoonie” or how to accept a long life of disability ahead of you.

That being said, here are a few of the things that I wish somebody had told me about living with Ehlers-Danlos syndrome, that I have learned over the past decade…  

Here are my 3 favorites:

#4 Seventy-five percent of your strength will go on the willpower to get up and dressed alone, the other measly 25 percent is spent on tasks you don’t even have the energy to do — working, cleaning and hospital appointments.

#6 You will have to sacrifice so much, but it’s to keep you healthy. The things you love may become the things you once loved. This doesn’t mean you won’t find other things you enjoy doing that also incorporate your health limitations. You aren’t stuck. There is so much out there in the world.

#8 Your reliance on medication doesn’t make you weak. You are not drug-seeking. If you didn’t need your medication you wouldn’t be on it. In moments of your own weakness from all the pressure so many people put upon you about how “you don’t need them” or how “you would be better if you stopped taking them” — never feel like you have to listen. The moment you stop taking your medications is often the moment you realize how much you really do need them, even just to feel even a little more human.  



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