Invisible conditions and the hyperkinetic author.: seanan

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.

mskauri

September 16 2009, 22:33:35 UTC 7 years ago

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I'm a friend of a friend...and can't agree more with what you've posted. I work in the State/Federal Vocational Rehabilitation program in one of the Pacific NW states...am a 2nd generation VR employee and spent 13 years as a VR Counselor. I now work in the Administration Unit and assist the Field Services Managers run the field operations around our state. I also teach in a Rehabilitation Counselor Education program and present at disability/employment conferences. Even before I was diagnosed with Fibromyalgia and bulging cervical disks (you shared yours...mine are C4-C7) following a car wreck in 2005, I "got" the invisible disability thing. I also have a mild hearing loss, a history of 4 knee surgeries and some significant allergy issues. Thank you for being so candid--and so direct!

I'd love to have you on my FL, if you don't mind...and would it be possible for me to share your post with some of my colleagues here in the Vocational Rehabilitation field?

alethea_eastrid

September 17 2009, 00:08:50 UTC 7 years ago

While I'm sure Seanan will get back to you eventually, because she's awesome like that, since this post is already at 90 comments (!) I'll point you towards the recent periodic welcome post , http://seanan-mcguire.livejournal.com/149533.html , in which the answers to your questions (feel free to friend, and link or quote at will, but "I do ask that a) you let me know, and b) that you ask folks to comment on my LJ, rather than wherever it is you're linking me from (unless you're using the link to support a post of your own, in which case, more power to you). Consider this blanket and forever permission.") are halfway down the page.

seanan_mcguire

September 17 2009, 00:58:16 UTC 7 years ago

Thanks, sweetie.

September 17 2009, 12:44:15 UTC 7 years ago

You're welcome. I figure I've been around for a while, I know the answers, I can maybe save you some typing.

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Invisible conditions and the hyperkinetic author.

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