Anyone paying attention (meaning my husband) would notice I have revamped my website. This meant I needed content. So I started writing copy for my home page, and before I knew it, I had outed myself as a person with a disability. I had written about my Fibromyalgia before in an obscure feminist magazine, LOUDmouth, but coming out on my website is another story.
Maybe I’ll delete it.
It all came about when I felt the need to explain why I wrote Stella Adler’s biography. Flashback to thirteen years ago when I started researching Stella’s life. My motivation? I couldn’t believe such an important luminary didn’t have a biography. And as I became more knowledgeable about the evolution of acting craft, I realized Lee Strasberg has been given all the credit. I would tell people I was writing about Stella Adler and they didn’t recognize her name, but everyone knew Lee Strasberg. To make a long story short, I wanted to reclaim her legacy. I wanted to set the record straight in the annals of history. I wanted the underdog to have her day in the sun.
Coming out with FM is the same story. There are so many people with debilitating invisible illnesses. I want their stories heard. Starting with mine.
I contracted FM, or at least realized something was wrong in 2001. It took four years to get a diagnosis, which is pretty good. The average is seven. I’ve gone through the stages of transitioning from excellent health to being a person with a disability: denial, hope, grief and acceptance. I still go back and forth between the two latter stages.
Can you imagine everything shutting down in the middle of the day? That’s what happens to me. Right in the middle of my f*cking workday.
I spent my last year of college in Spain—the year I had to apply to graduate school. This is before email was a viable way of communicating and sending information. I had to send each application in separately, tailor each one, cutting and pasting and photocopying. I needed Internet cafes, photocopy machines, a post office, and god forbid I needed pesetas, because all these places of business, including the bank, closed in the middle of the day for a siesta. I raged! This was my future they were messing with. How could anyone operate if everything closed down in the middle of the day!
This is what happens to my body. It starts coming over me around ten-thirty, eleven in the morning. My brain slows down. I make mistakes. I can’t write or produce. Then my body follows. I become sluggish and so so tired. I feel I might die if I can't lay my head down. I keep going until I feel nauseated and then I give in. Now it's about noon. At this point I feel as if I pulled an all-nighter and I have to sleep off a mind-numbing hangover. So I do. At least there’s a solution. But boy do I resent wasting half my day light hours in bed. That’s the part I have to get over.
Once or twice a year I actually have a normal day and can stay up through the whole day. Once or twice a year I might fall into a flare and become bedridden. When this happens I never know if it’s going to last one day or one year.
These invisible illnesses are wicked because you look fine. You don’t look sick. No one can see your limitations like they do in the last stages of cancer, which I’m told from people with both FM and cancer aren’t so different from one another. One can easily feel like a malingerer. I’ve gotten over that part at least. It’s just the hours in bed I loathe. Should I just move to Spain?
So let me ask those of you with MS, Lupus, deafness, chronic pain, diabetes, epilepsy and the myriad other invisible illnesses out there : How do you cope with the specific limitations your illness causes?
Or should I just delete this post and the part about outing myself on my homepage?