Invisible conditions and the hyperkinetic author.

[seanan_mcguire]

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.

Comments

[vixyish.livejournal.com]

Yeah, that. I have a friend who is "overweight" (over whose weight?) and is, by all medical tests, perfectly healthy. Blood pressure, cholesterol, all those sorts of tests, just fine. She eats healthy, exercises every day, and simply can't lose any more weight than she has due to something about thyroids, for which she's on meds. She's absolutely in perfect health-- and she's fat. In her case, "fat" is a descriptor about as alarming as "tall".

But she had a hard time finding doctors who would actually look at the *medical tests* rather than her appearance in order to judge her health; usually even when she found a reasonable doctor, the nurses who did the initial weigh-in/blood pressure/etc. would still hassle her about her weight, *every* appointment.

[tollermom]

Oh gods yes... I wish to kill those nurses. I've had those nurses. Also, the places like MedCheck that insist on weighing you (and haranguing you about said weight) when what you've presented with has absolutely nothing to do with weight and they're not your primary care physician. (For instance... three days before OVFF two years ago, I developed fever blisters, for which I wanted the good antivirals to make them go away, since singing for three days with fever blisters is painful. First stop... get weighed and yelled at by a nurse for being overweight. WTF does that have to do w/ my stress-induced fever blister outbreak????) Gaaaaaaah!

(Stuffs RantyMcRantsALot back into her box...)

Sorry...

[keristor.livejournal.com]

Oh, me too. Every time I have a blood test (I'm on minimal[1] medication for blood pressure[2] so they do it every 6 months) I come out dead centre of the 'normal' range for everything. Even sodium, and I have a fair bit of salt (it counters cramp) comes out dead centre. One doctor actually said "you're completely normal" and I told him he'd just insulted me, I'd never been called normal in my life! (I knew him fairly well by that time, and he saw the joke...) But according to my previous doctor everything was because "you're overweight"...

[1] And I mean minimal, most people don't even know that Ramipril doses go under 5mg per day, I'm on 1.25. That's getting down to homeopathic levels.

[2] And the trouble that gives. Try to join a gym? On BP meds, they won't touch you.