Why I’m Happy I Received Diagnoses of Neuropathy and Myopathy
Let me start by saying I do not want to be sick. I am not lazy, or trying to get attention. What I do want is a diagnosis, so medical professionals can treat my symptoms, and if possible, heal me. There are so many people who do not understand people with chronic illness and why we want a diagnosis so badly. I want to share my story so I can help other people understand how difficult it is to live with unidentified health issues.
As a young girl, I spent a lot of time during my non-school hours in bed and on the couch. My parents chalked it up to me being a lazy person, but when I would get bursts of energy, I’d be out doing all I could, and I didn’t feel lazy! In middle school P.E., I would always stop running because of sharp pain and a burning sensation in my chest. Again, I was labeled as lazy and told to work through the pain. (Twenty-five years later, we would discover I had asthma.) My parents had me in soccer and softball for several years, but I would get worn out quickly, begging to be benched after a few quarters or innings. As you see, there was a pattern. High school went on the same way, only with the emergence of back pain on top of everything else.
I started falling down in my early 20s. People just thought that was funny. “Look how clumsy she is,” they said. Everyone thought I was both lazy and clumsy. I had x-rays and all the standard blood tests, but nothing was showing up. After I had a couple of children, my energy plummeted, but after seeing a variety of doctors, and with a chart thicker than a Harry Potter book, I still had no diagnosis. The medical and family consensus was that I was fine, lazy, and maybe a little depressed. I was a little depressed; my body was betraying me and I didn’t know why. Not only that, but no one who was close to me believed what I was saying.
In my 30s, the pain became more intense. It was difficult for me to get around, and I was becoming more unsteady. My pain was mostly in my back, but slowly creeping in a little bit everywhere else too. “Where did it come from? Why was it there?” Those were my questions. What answer did I get? “You must want drugs.”