As I was reading a post about Ehlers-Danlos syndrome on Stanford Medicine’s Scope blog, a particular line caught my eye.
The author of the post writes about “the moment [EDS patients] open our eyes and waken into the reality of our bodies.”
Now, although I don’t live with EDS, I connected with that line because I think it describes a feeling common to anyone dealing or coping with hardship.
Let me explain.
The moments that usher us in and out of sleep can be quite turbulent. When you’re falling asleep, there are no distractions. You’re left alone in the dark and the quiet, and the emotions and thoughts you suppressed all day come crashing to the surface. Then, when you wake up, the reality you had escaped for eight hours hits you all over again.
I know I’m not exactly off to a positive start here, but I think it’s important to talk about the highs and the lows, what’s beautiful and what’s raw.
Michael Bihovsky (who wrote the Scope blog post) seems to agree. Normally, he writes, he tries to be inspirational in sharing about his EDS. But that’s not always possible. Sometimes, Michael says, he doesn’t have it in him.
A genetic disorder, Ehlers-Danlos syndrome painfully affects the body’s connective tissue. There is no cure and, according to Michael, the syndrome is often underdiagnosed.
That’s why awareness of EDS is important, whether inspirational or raw.
If you’re dealing with Ehlers-Danlos syndrome, or any other rare disease, talk about it. Write about it. Share your experiences. The good, the bad, the ugly. Speak up about those thoughts, emotions and feelings that flood your mind in the moments that usher you in and out of sleep.
Trust me, there’s hope and help in the sharing.
