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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.
September 16 2009, 14:55:54 UTC 7 years ago
::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."
September 16 2009, 15:05:07 UTC 7 years ago
September 16 2009, 15:30:36 UTC 7 years ago
September 16 2009, 17:11:16 UTC 7 years ago
In a place as big as Los Angeles, finding a good one isn't hard - thankfully. You CAN change doctors. In some parts of the country - not so much, and that makes me sad.
I did a post once, from the healthcare worker's perspective - on why 'fat' people get the short end of the stick from them. You want an invisible chronic illness, mental illness due to work fatigue (burnout) is right there as well.
I just wish more people could see THAT as the problem instead of 'nobody is listening to me because I'm FAT' and never see another doctor for what ails them. Then again, I am that stubborn. Wish I could teach it.
September 16 2009, 15:14:36 UTC 7 years ago
I know a lot of people who are above current societal "weight guidelines" and are healthier than I'll ever be. It's a factor, not a guarantee. Except when doctors turn everything into a matter of weight, and make it a self-fulfilling prophecy.
September 16 2009, 16:49:39 UTC 7 years ago Edited: September 16 2009, 16:51:56 UTC
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.
September 16 2009, 18:14:08 UTC 7 years ago
(Stuffs RantyMcRantsALot back into her box...)
Sorry...
September 16 2009, 19:40:06 UTC 7 years ago
[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.
September 16 2009, 15:17:42 UTC 7 years ago Edited: September 16 2009, 15:21:21 UTC
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.
September 16 2009, 15:32:36 UTC 7 years ago
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.
September 16 2009, 15:21:22 UTC 7 years ago
Amen.
September 16 2009, 17:25:15 UTC 7 years ago
My own pet hobby-horse is hypothyroidism. Gaining weight while breastfeeding didn't tip me off. The constant black sucking pit of fatigue didn't tip me off; the kid was very attention-demanding and not sleeping through the night much. No, my mom getting diagnosed by freaking accident and then pestering me into asking for a test, that got me diagnosed.
It should've been a routine test, dammit. It should've been a routine test for my mom's father, who probably died from hypothyroid-related complications, in a state of hypothyroid-induced dementia.
*cough* Everyone, get your thyroid tested. And make them tell you the numbers. 6 is no longer within the range of "normal." It is too high.
September 16 2009, 19:28:56 UTC 7 years ago
September 17 2009, 01:00:45 UTC 7 years ago
(And, as a PS to the original comment, here are my hobby-horse's foals, Sleep Apnea and Adrenal Fatigue. They share similar characteristics, chief of which is being under-diagnosed... I'll shut up about them now. O:> )
September 16 2009, 22:14:25 UTC 7 years ago
I had severe dehydration, and I was diagnosed as depressed/overweight.
fyi
September 17 2009, 01:17:54 UTC 7 years ago
The blog First, Do No Harm contains an overview of how to submit complaints against doctors. The fat prejudice is strong, so nothing may happen, but it is a concrete way to press for change.
September 19 2009, 01:12:51 UTC 7 years ago
My mother, near the end of her life, lost a lot of weight. She wasn't eating well and was drinking too much so they blamed that, told her and Dad to fix it, chucked her in a nursing home for physical therapy and recovery, and then she got out and...they realized she had lung cancer. (Mom's pain tolerance, like Seanan's, and for that matter like mine, was obscene; she once went maybe 12 or 14 hours before going to get checked out for painful coughing that turned out to be a collapsed lung.)
My one consolation is that a) it was only a month or two difference, b) it was almost certainly incurable when they failed to diagnose it as well as when another hospital finally did and c) she would have refused all possible treatment anyway.
Doctors that fixate on the easy blame-the-patient things and don't check for other fixable conditions STINK.