Invisible conditions and the hyperkinetic author.: seanan

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.

jimhines

September 16 2009, 14:55:54 UTC 7 years ago

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"every doctor I saw for more than ten years said 'lose weight and the pain will go away.'"

::Stabbity stab stab stab!!!::

Okay, I'm done now. For the moment. I may be back to express more stabbity at this later. But I absolutely despise the approach of "You're overweight, so we're not going to bother looking into any deeper conditions, or even to believe you when you tell us something more is going on here."

beable

September 16 2009, 15:17:42 UTC 7 years ago Edited: September 16 2009, 15:21:21 UTC

I have a friend whose doctor refused to treat things like her PCOS, Hair-In, or migraines, or almost anything else unless she'll go on a diet.

She was on diets most of her life. They were bad for her. They made her less healthy. It may be weird that her "healthy" functional weight is something that the medical establishment would consider morbidly obese, but at her current weight she can:

- take the stairs to her former 12th floor apartment
- walk around for 8+ hours at a steady pace
- use her sister's kids (ages 5-7) as chest flies

Thus she is in better physical shape in terms of fitness and exercise than most people I know, fat or thin.

seanan_mcguire

September 16 2009, 15:32:36 UTC 7 years ago

Dude, we were intentionally breeding for big people for centuries. Most of the "healthy" people today have such low BMIs that they'd have died in an agrarian society. You can't undo centuries by deciding "okay, let's all be thin now."

I think a lot of people are bigger than is optimal because food with a high caloric density is made so easy to get (often easier than lower-density foods), but it doesn't surprise me when I meet people twice my size who can bench-press oxen.

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