I was watching a re-run of Seinfeld the other day, kind of as background noise as I busied about the house. As a child of the '90's I grew up on that show. The Thursday night line-up of the ages; Friends, Seinfeld, ER. It didn't get much better than that. As I paid attention to the particular episode that was on, I discovered it was the one where Elaine gets a "bad mark" on her medical chart for being a difficult patient. This chart follows her around, from doctor to doctor, through all of New York city. She could not get a doctor in the land to treat her for a total body itch that was driving her crazy, for once she was noted as difficult, they won't treat her. Sound familiar, my fellow-Fibrates? Well I am watching this and getting more and more pissed off as the laugh tracks get louder and louder. That is illegal! They can't just give your medical records to another doctor without your consent! I fumed. Yorkie and Porkie struggled into the living room, yawning and stretching, to see what all the fuss was about. As this kept going on, from doctor to doctor she went, the more she was treated like a hypochondriac, crazy lady, total nut job.
There was a particular pain in my heart this episode was floating to the surface, and I got very mad. For I was this hypochondriac, crazy lady, total nut job once upon a time myself. Except an annoying itch was the least of my problems. I was in so much pain and deep down exhausted at my core, 10 hours of sleep a night were not enough! I could hardly do my job and my sensory perception was so off the charts I could not even go to the dog park because the smell of urine overtook me. My stomach was a mess, my head in a vice, my throat sore and my right arm darn near paralyzed. And yet nothing was wrong with me. Because after a few vials of blood, the results hardly filling up a complete page, modern medicine could not diagnose me. They just gave up on me. But my symptoms did not go away, and only continued to get worse. I gave up my job, taking a 4 day-a-week position I had previously held on my way to getting the job I had to give up. A self-imposed, illness-educed demotion. It was a short time, only about a year, before Fibromyalgia and CFS disabled me. After I pushed myself so hard to keep up with the obligations my healthy-self raced around in a type-A frenzy to fulfill.
I really wish someone had told me then this was not an illness of the normal kind, the kind I had been raised to believe a pill or surgery could cure. That this was a complete crisis of the way we live our lives. But I had to learn that on my own. I heard it rumored many times along this journey that I had to change my lifestyle completely. Change jobs, countries, husbands, whatever it took, and this illness would subside. What a luxury, I scoffed. Who has the money to do that? I was not changing husbands, that just seemed much more complicated to me, and the one I had I loved very much. I could not go start over in another country because I could not work enough to support myself. And that too, sounded like an awful lot of work for a girl that laid on the sofa moaning and crying all day because doing laundry was too consuming. So I did what was available; pushed too hard, had a breakdown, spent 7 months disabled and fought harder than I ever had to get myself standing back up on my feet. And 6 years later I will have to concede, I have changed my lifestyle completely. It did not seem possible at the time, but it is the only way I got enough of my life back to find that deeply buried laughter in my heart, song in my step. A reason to go on.
Thanks for joining,
Leah
