Seanan McGuire (seanan_mcguire) wrote,
Seanan McGuire
seanan_mcguire

  • Mood:
  • Music:

Invisible conditions and the hyperkinetic author.

This is National Invisible Chronic Illness Awareness week, which is something I consider to be genuinely important. We're an appearance-based society, to a large extent, and "you don't look sick" is a far-too-common statement. talkstowolves has posted about her experiences living with temporomandibular joint dysfunction (TMJD), as well as a variety of other conditions. It's very eye-opening. Meanwhile, jimhines has posted about the frightening financial realities of diabetes.

I don't have an invisible chronic illness. What I have is an invisible chronic disability. At some point during my early to mid-teens, I managed to severely herniate three disks in my lower lumbar spine (L3-L5, for the morbidly curious). Because I was extremely overweight at the time, every doctor I saw for more than ten years said "lose weight and the pain will go away," and didn't look any deeper to see why a twenty-three year old woman was staggering into their offices screaming whenever she put her foot down and unable to straighten without vomiting.

Because the body learns to cope with things, I eventually recovered enough mobility to decide to do what the doctors were telling me, went on Weight Watchers, and lost over a hundred pounds. This wasn't as hard as it might have been, because I am a) a naturally picky eater and b) naturally really, really, "was walking a mile every morning to the convention center at the San Diego International Comic Convention, because that calmed me down enough to move calmly through the crowds" hyperactive. So "here, eat lettuce and do aerobics," not exactly the most difficult thing I'd ever heard.

Sadly, it turned out that the doctors were wrong. Being severely overweight may have made things worse, but it didn't cause the injury, and a year and a half of hard aerobics definitely made things worse. In the fall of 2007, I began experiencing numbness of my right side, culminating in losing all feeling in my right leg and nearly falling into traffic when I suddenly couldn't walk. That's when a doctor finally slapped me into an MRI machine, went "oh, crap," and started dealing with my actual injuries.

I look totally healthy. I walk quickly. I move sharply. I am 5'7", reasonably young, and apparently able-bodied. But sometimes I sit in the "people with disabilities" seats, because I literally can't stand on the train for the duration of my commute. Sometimes I glaze over while I'm talking to people, because my sciatic nerve has started screaming like my leg is full of fire ants, and I'm trying to figure out a polite way to excuse myself to go take painkillers. Sometimes I keep walking at a crazy death-march pace because I can feel the numbness creeping back, and if I don't get to my destination before I lose the temporary use of my leg, I'm going to be stuck. That's just how life is.

We may eventually pursue surgical solutions—right now, I'm doing physical therapy, restricted forms of exercise, and trying to work out a detente with my own limitations. They aren't bad enough to qualify me for full-time disability, just bad enough to be inconvenient, invisible, and keep me off roller coasters. Sometimes I meet people who blow off my limits as "whining" or "being lazy." They don't stay part of my life for long.

So please, this week, and every week, remember that appearances are deceiving; like books and their covers, you can't judge a person's health by how fast they're moving. They may just be outrunning the collapse.
Tags: contemplation, medical fu, state of the blonde
  • Post a new comment

    Error

    Anonymous comments are disabled in this journal

    default userpic

    Your reply will be screened

    Your IP address will be recorded 

  • 165 comments
Oh, I agree. People who are not in that group require effort to reassure them that I'm not dying, that I just need to lie down, and that's effort I need to get myself taken care of.

Another reason they're the only two I can be In Pain around is because they've watched me to learn my warning signals (especially the ones I miss (which is helping me learn my triggers); when I had one of the Really Bad Migraines crop up at a con, they had me up out of my seat, back to my hotel room, and in bed with a glass of water and the Big Gun painkillers before I'd even realized I'd made a sound. Particularly impressive was the fact that they were both across the room from me when this all started.

AngelVixen :-)
P.S. I went to check out your cool icon, and saw you went to Hollins. Me too.
*nod* Exactly. Time/energy spent reassuring people that no, I'm not dying, or even really sick, I just need to recharge batteries drained too much is time I could have spent doing exactly that.

Hee. That's awesome. I have people that will give me energy to stave off bad crashes in much the same way. It's very awesome.

And eee! :D Yay Hollins alumna! :D I loved the campus so much. It's still a place I use in my head as a 'restful/recharging' meditative place.