Tuesday, January 29, 2008

Tom: Taking Pain Seriously

I was first diagnosed when I was sixteen, but the symptoms had been around in some form or another since I was eight. That was when my family uprooted and moved city. Moving is hard for everyone but I took it harder than most. My life changed in what seemed like overnight, I used to be able to do everything but suddenly I was chronically lethargic and I put on a lot of weight.

When I was around ten, I had my first experience with pain. I woke up one morning and I simply couldn't walk, my knees were in agony whenever I tried to move. As everyone who has fibro has experienced, the doctors couldn't find anything wrong and my blood was perfect. I felt so guilty, like I was nothing but a drain on everyone and they might not even believe me, something I still struggle with. It persisted for several weeks then as instantly as it came it left. Since then I get those same bursts of pain and there's no rhyme or reason in the duration between attacks, the duration of them or where in my body it will manifest.

I ended up going to a private high school known for producing top athletes where being obese earned me merciless bullying, and instead of making me fitter the rigorous PE schedule destroyed my body. After my parents divorced and I was living with mum, we'd argue every morning about how sick I felt, she never believed me and I got regular beatings, and to top it off she lied and told anyone with authority that I beat her, and as she said, no one did believe the male in any case of domestic violence, even though I was still a child. The more anguish in my life, the sicker my body got.

In the last year of school I completed, I made a friend online who lived in a different state and happened to suffer from fibromyalgia, and as we got to know each other, we both knew that was exactly what I had. I'd hate to think what life would be like now if I still didn't know what was wrong with me, I owe so much to her. At the end of that year I lived with her for a while so I could get diagnosed by her doctor. Thankfully when I came home I moved in with dad who is very supportive and understanding.

One of the biggest challenges is just trying to be taken seriously. I think in society, chronic illness is either seen as terminal or one that can be controlled by popping a pill every day, anyone who doesn't fit into one or the other is a hypochondriac or a liar. Being obese too, like many people who have little energy to use on non essential things like exercise, I've known people who think that I'm only disabled because I'm fat. "All fat people have no energy but they still go to work and get on with life" and "It's your own fault for being a glutton in the first place" are two things I've heard enough for one lifetime. Many of the same people who support and even donate to "sexy" illnesses like leukemia, spinal cord injuries etc. will expect the rest of us to pull ourselves up by our own bootstraps when we have cinder blocks tied to our arms. I still only know a handful of people who believe I'm sick.

The other challenges are the lethargy and depression. The pain I can usually handle, but as a young person, trying to find my place in the world with no qualifications and high demands is impossible. It's very hard when I see other people who got fibro in their late twenties or thirties, after they had gone to college and got experience working so that at least they might be able to get a good part time job. For me the only job I could get is manual labour which would be disastrous for my body. I never graduated from high school so no university will accept me. I've tried a few times to do other kinds of courses but I've always run out of steam too early to complete them so far. If it was because I was stupid I'd be okay with it, but I know I'm smart and it's only because of my fibro and bad childhood that I did so poorly, it's a very bitter feeling.

It's taken a long time to find things that help, but without a good psychologist who practices EMDR I wouldn't even have the courage to leave the house, and a few months ago I was given a ray of hope in the form of Zyban. It's not perfect or even completely adequate for my needs, but it's given me enough energy that I feel like I'm actually alive rather than floating in a cloudy half-awake-half-asleep meaningless existence. I don't want to get my hopes up but I do feel like things might work out okay in the end.

We live in a world that's evolved into a hyper quick fix globalised society where we're also expected to not only keep up with the Joneses, we have to decimate them, and it's been quite a painful but eventually rewarding learning experience discovering that life isn't a race. I can only do the best with the tools I was given, and I feel like I'm doing that now.

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