EDS Does Have Me
So often I see posts saying, I have _____ disease, but it doesn’t have me. At first, I felt so discouraged because I couldn’t say this about myself. I have Ehlers Danlos Syndrome, Mast Cell Disorder, autoimmune disorder, migraine disorder and more, and it does have me.
Two things that I’ve noticed about the people who can say their disease doesn’t have them: they’re young, and they have only one disease to deal with.
When I was in my twenties I wasn’t diagnosed with any of these yet. Though I had suffered with back pain from scoliosis, there were no signs yet of dislocations. I was very flexible, but didn’t have painful joints. If I had known why the hours of piano practice were causing my back pain, I would have dropped that piano performance degree.
Ehlers Danlos diagnosis wasn’t going to be discovered at that time and I just took the pain as my lot in life. I would have said, “I have Scoliosis, but it doesn’t have me” Haha. Little did I know then how bad my pain would become.
Later in my twenties, after three miscarriages one of my doctors diagnosed me with anti-phospholipid syndrome. Because of this, I took baby aspirin with my pregnancies. My next two high-risk pregnancies were successful. My blood-tests now show that the level was actually border-line for this syndrome.
At the time (80’s) this was a new syndrome, and I’m very thankful that the doctor treated me for it anyway. With my new-found Mast Cell disorder, I’m sure the baby aspirin was important.
Well, my disorders (diseases-it’s all up in the air) do have me on most days. With the disorders I have, everyone has a unique symptom grouping and level of suffering. I’ve seen people better off than me and people worse than me.
I just know that I can’t fight it and beat it. It’s great that some people can. When healthy people read all those positive stories of beautiful young ladies, just remember that everyone can’t say “I have ___ disease, but it doesn’t have me”.
@2016, copyright Lisa Ehrman