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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…

1. While accepting that this is your life is the biggest challenge, of course at times you are going to wish this was never your life and never your burden to deal with. The biggest advice I would give is to never focus on the things you can’t do, but keep in mind your limitations. Do the things that keep you happy and your mind busy but be aware to not overdo it.

2. You are now a “medical mystery.” You will never know how it feels to not visit the doctors three times every week or to not have multiple monthly hospital appointments, with the likely outcome that even the medical professionals don’t know what is wrong.

3. It will hurt every single time the weather changes. Your bones and muscles scream at you every minute that you are awake, and add seasonal weather changes to the equation and you have one bedridden spoonie.

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.

5. You will most likely feel alone, no matter how supported you really are. I felt alone long before I was diagnosed and will probably feel alone for a long time to come, but it is so important that you know that so many people care about you, even if their presence cannot be there physically. Reach out to people, join online support groups/forums and surround yourself with all of the support that you can get.

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.

7. With chronic illness often comes mental illness. Chronic pain can contribute to mental health issues such as depression and anxiety. It doesn’t mean you are “crazy,” nor does it mean you are unable to function like a normal human person, as I so often think about myself. You are fighting harder to be healthy than most people do in their entire life time. Give yourself some credit.

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.

8. Accept yourself, please. It is so hard to survive in a world that doesn’t understand you as it is, and being your own enemy will only make it that much harder. Do whatever it takes to let the world know how you feel. Be your own advocate.

9. You can do this. You tell yourself every day you can’t, and every day since then you have woken up and done it all again. You can do this and you will do this. It might feel like the end of the world, but it is only the beginning.