My producer, the lovely Joy Buchanan, asked that my first post be about who I am and what I'll be doing here on Health Central. After five days of existential angst, it's occurred to me that perhaps I'm overthinking things. Which, some would argue, describes me to a T.
Living with a chronic condition or disability has a way of making you think and not just because you often have long stretches of time and nothing to do but give your brain a workout (endless waits in doctors' offices, for instance).
You think about the disease and what "interesting" symptoms it's thrown at you recently. You think about what you can do today and what you can't and then you think about how that makes you feel. You also realize that, all of a sudden, you've joined a group based on non-health, on the chronic condition now sharing your body, that you have become a different kind of "we" than who you used to be. You think about how "we" see the world and how we are seen by others. How that affects your identity and how who you are, who we are, is affected by pain levels, fatigue, mobility, ability and lack of ability.
Living With Rheumatoid Arthritis And Disability
I was 4 the first time I felt the pain of rheumatoid arthritis, 9 when I was diagnosed and 13 when the blasted thing galloped through my body like Attila and his Huns on a particularly perky rampage. After spending years in hospital, I was discharged at 16 with two new titanium hips and an electric wheelchair and screeched out of there so fast you couldn't see me for the smoke. For a long time, my thinking on life with arthritis was to focus on the former and, whenever possible, ignore the latter. Still is, although with some modifications. After a massive flare in 2004, I started using the new biologic drugs (first Enbrel and now Humira) and the experience has taught me more about living and living with arthritis than I ever knew before. These days, I don't ignore my disease. I respect it and try to work within my limits. Most of the time, anyway.
Although my rheumatoid arthritis has, with the help of medication, generally been relegated to back burner status, the impact of it, my disability, hasn't. Four decades of the seated perspective has given me the opportunity to learn about not just rheumatoid arthritis, but larger health and disability issues, as well. My journey through life has often become sidetracked, but somehow, always ended up in places where I was given the opportunity to share experiences with other people in similar situations. The context differed, ranging from being a friend, to volunteering with agencies and peer support groups and to working in disability advocacy, doing my bit to make our world more accessible.
We live in an interesting subculture, those of us who share our lives with a chronic disease or disability. We are a minority, often an invisible one and much of our time and energy is spent on negotiating a world made for healthy, able-bodied people. At times, it's like falling down the rabbit hole. Other times, it feels like a nightmare and quite often, there is great joy.
