5 Things I've Learned Since My Ehlers-Danlos Syndrome Diagnosis

After spending middle school, the entirety of high school, and two years of my post-high school life searching for answers and explanations, I received my official diagnosis of Ehlers-Danlos syndrome on October 13, 2017.  If you look at that date you’ll notice I recently passed the two-year mark. And over those two years, I’ve learned more than I could even express to you, but I’ll tell you my top five things.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

1. You have to believe it isn’t your fault.

I know it isn’t my fault that I’m sick and I know there was no way for me to prevent my symptoms. I know a mutation in my genetics is the reason why I’m a part of the chronic illness community. I’ve known all of that for years, but I’m just now starting to believe it. And the change in how I view myself and the world has been amazing.

2. You have to forgive yourself.

I finally accepted the apology I’ve been trying to offer to myself.  I’ve finally forgiven myself for trying to force my body to act completely healthy and abled when I knew it wasn’t. I’ve finally forgiven myself for events that were out of my control. Do I wish I made a different decision when it came to my lifelong injuries? Of course I do. But there was no way for me to know I would cause permanent damage to my body from injuries that should’ve fully healed. I’ve forgiven myself for unknowingly causing damage to my body.

3. It’s OK to have fun on your good days.

Even before getting diagnosed, I wasted so many days where my symptoms were manageable because I was scared people wouldn’t believe I was actually sick. Instead of making the most of my days, I was shoving myself into a smaller and smaller box. Now that I’m putting myself back out into the world and experiencing life again my quality of life has definitely improved. Of course there are days where I’m bedridden, but there are also days where I can go out dancing or out on a hike. And days like those are the ones I think about when I’m in a flare.

4. It is also OK to rest when you need it.

I was so fixated on trying to live a “healthy” life that I wasn’t taking care of my unhealthy body like I should have.  I pushed my body to limits it should not have had to experience and caused damage that did not have to be done. I was too scared that if I stopped moving I would freeze up and never be able to resume life as normal again.  Now I know that thought process is wrong, and when my body is sending me signs it needs to rest and heal, I need to comply.

5. Your definition of “normal” will change, and that is OK.

Life is always changing and evolving. The definition of “normal” changes for everyone. But when you have a chronic illness, your normal tends to change often and drastically. Sometimes for the better, like your symptoms are becoming more manageable. Sometimes for the worse and you need to start intervening. When your everyday routine needs to change to accommodate your needs, do it. Don’t try to force yourself back into the mold of your past that no longer fits. Embrace the new life and new experiences you are set to have.

Navigating life as a person who has a chronic condition is the hardest thing I’ve ever had to do.  But along the way, I’ve learned some tips and tricks that have helped me, and I hope they help you as well.