Thriving with EDS – Adjusting

My Lesson: Adjust to a New Reality

Before the EDS diagnosis, before turning 35, I felt somewhat normal although deep down I knew I was always different. I enjoyed the things most everyone else enjoyed at my age. I did many activities that everyone else did, although I instinctively veered away from sports. I only felt a little sorry for myself. But then, something changed. Was it the pregnancy hormones or just turning 30? It may have been a combination of both. I had a hard time adjusting to the new limitations and restrictions that I had to place on myself to avoid injury and illness. I had to make accommodations for my body that annoyed and aggravated me (and others). I had to let so many things go that I loved, including going to the chiropractor. As much as I loved horseback riding it was backbreaking and I couldn’t take the pressure on my spine and the impact. I would be painfully sore for a week. I had to stop going to the gym because I kept breaking things with weight machines and ending up in the ER getting x rays that showed nothing. My life had to change.


When I couldn’t deny my invisible condition any longer, I began to grieve. Sadly, I allowed my grieving to turn into giving up. I gave up. Since PT wasn’t solving my post-pregnancy issue after 2 full years of every lunge imaginable, I decided it wasn’t worth the embarrassment of being there at such a young age walking around the elderly and frail. It felt like everyone was wondering why I was there. I certainly was! With a defeated attitude, I gave up on myself. I mistakenly quit because there was no cure for EDS, so why bother?


Quitting out of anger, self-pity, and resentment felt good for a while, that is, until my body started to deteriorate further due to my doing nothing. Then I had new injuries. Injuries from doing nothing. Weakness had set in, and that spelled disaster for my joints. Faced with new problems, I had to reconsider my position of “why bother.” If I wanted to be able to live independently, I had to adjust myself to my circumstances, my diagnosis, and the facts of aging with a connective tissue disorder. My new age had to mean new activities. To keep perspective, I began to list all the things that I instinctively knew that I couldn’t do as a kid and begin adding things that I now knew I couldn’t do like chiropractor adjustments, advanced yoga poses, fall into despair, and quit everything all together. To encourage myself, I had to begin to list the things that I could do and add new activities to that list. This new list included writing blogs, books, reading, walking, coffee shop mediations, and volunteering to help little kids. Both lists had to grow. I had to adjust.

When I adjusted, things became easier emotionally. I had more optimism when I looked at the list of things I could do. The “Can Do” list included things that I loved. My “Can’t Do Anymore” list included things that I used to love. I learned to love the memory of those activities and let those chapters close. I still thought of them fondly but no longer focused on that list. I stopped entertaining self-pity.  I opened up new chapters just waiting to be written.

Suggested Soul-work:

Make a list of things you “Can’t Do Any Longer” and a list of things you “Can Do and Enjoy.” Be sure to balance this out. Focus on the “Can Do” list. Think of the “Can’t Do” list as an exercise in self-discipline, self-control, and self-love.

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