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

[trialia]

You, too? Heh. Thanks for the post, hon. I'm working on mine. The funny thing is, about your last sentence: I can move faster when I'm using both my canes than I do when I'm without either.

[seanan-mcguire.livejournal.com]

The way my spine is balanced, I'm generally a lot faster without a cane, but I'll sometimes carry one at conventions when I'm having spinal issues, just because people are less likely to hug me before asking if I'm huggable when they see that I'm carrying a cane of some sort.

[jaylake.livejournal.com]

Speaking from experience, cancer's kind of like that. Unless you're on chemo, or in surgical recovery, you can be quite ill and be apparently hale and able bodied. Not to mention the emotional and mental distortions it induces...

In my case, 16 months after colonic resectioning to deal with said cancer, I still don't have normal bowel function. As a result, I spend a lot more time in the bathroom than anyone who doesn't know me well thinks I should. (On long airplane flights, sometimes, for example, where hanging out in the bathroom is a sign of either illicit smoking or terrorist plotting.) That's not on a par with skipping out of your car in the disabled parking spot, but it occasionally causes issues.

Good luck to you.

[seanan-mcguire.livejournal.com]

I can absolutely see that causing issues. I sprained my bladder at one point. Combine that with painkillers that make me pee a lot, and wow, was I the queen of the pretty tile room. People got very weird about that in public places, either assuming I was direly ill, or doing something horribly wrong in there.

I don't think we should go around assuming everyone's secretly sick, but I do think we need to remember that not everything is visible. I don't park in handicapped spots, 'cause I don't need them. My baby sister used to drive our grandmother, who was handicapped, and would sometimes be running back to the car to get gramma's meds, only to get scolded for clearly abusing the handicapped space.

Good luck to you, too. I'm glad you're here.

[magsmom.livejournal.com]

"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."

Great line! I may have to steal it.

I don't have any hidden disabilities/illnesses/conditions, except for my current shoulder injury. And that's hidden only until I move my arm and then collapse in pain. (I'm no stoic). I feel bad for those who have to suffer in silence.

[seanan-mcguire.livejournal.com]

I'm very stoic. It's that, or never get out of bed. This has led to me being yelled at by doctors, who really want to know when it hurts.

[http://users.livejournal.com/la_marquise_de_/]

Ouch. My best friend has a similar condition. I know how excruciating it can be. Sympathy.

[seanan-mcguire.livejournal.com]

It sucks, but we endure.

[jimhines.livejournal.com]

"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."

[bercilakslady.livejournal.com]

I've heard this as "I don't want to go to a doctor who will tell me to install Linux". I'm overweight and don't have associated health problems (knock pixels), but I still need to be careful about what doctor I see, just in case something does go wrong.

[angel-vixen.livejournal.com]

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.

That is an awful truth, but you've put it better than I could. My dad and I both personally know far too well how that works.

AngelVixen :-)

[seanan-mcguire.livejournal.com]

It makes me sad, how many of us do.

[bkwrrm-tx.livejournal.com]

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.

This. Right there.

You win.

*hugs*

[seanan-mcguire.livejournal.com]

Hugs. Thank you.

[jacylrin.livejournal.com]

I <3 you. Having a host of invisible illnesses, plus being fat (in large part DUE TO the meds and illnesses), some doctors have a way of setting me off (OK, many ways of setting me off). Fortunately I have a good general practitioner and, when I go back to him after I finish nursing, a good rheumatologist.

Sometimes I'm walking fast because it's going to hurt whether I'm going fast or slow, and I might as well get it the hell over with so I can sit back down, not that sitting always makes it better, anyway.

Canes are also useful for beating people who give you crap. I knew someone with MS who took to "accidentally" putting her cane down on people's feet who took the handicap stall who she knew didn't need it (especially ones who went in even when they saw her coming with her cane), since getting up without handrails was getting more and more difficult.

[seanan-mcguire.livejournal.com]

See, it's the "who she knew" that makes me less comfortable about that statement. If I see someone with a more severe handicap coming, I'll absolutely cede the handicapped stall. If not, it's almost always my preference, because sometimes I genuinely need the rails to stand, and I don't always have a clear warning of when those times will be.

[dragonsblog.livejournal.com]

The fact that it's Invisible Chronic Awareness week and you post this today...the irony is so strong I have to laugh. That sort of "laugh or bash your head into the wall" thing.

One year ago today, my own little personal hell began. That's when I got sick. About a week later, they figured out what was wrong with me. I have a fainting disorder. I periodically lose consciousness. There's not really any rhyme or reason to it, except I can usually tell when it is coming so I have a window of a few minutes to do something about it. And oddly, my brain works properly enough to ensure that it won't happen when I'm driving, so I can still drive. I have trouble standing up for long periods of time, and sometimes not so long periods of time, like in line at a store.

I can't tell you the amount of stuff I've missed in the last year spent trying to piece my life back together and how much stuff that's gone for good, like my grad school dreams. Realizing that I'm not going to just "get better" and instead progress can be judged in "I went to the grocery store by myself for the first time in 6 months" and that it's all about management of my condition.

I can't tell you how many times in the past year I've heard "You look better" from people that hadn't seen me in a long time, and thus the "better" was meaningless. I figured out that was their way of saying "you don't look sick". I usually mumbled some polite answer, but what I really wanted to say was "I have a fainting disorder, what do you expect me to look like, purple with yellow polka dots?"

The isolation, loneliness, and uncertainty are also issues. I'm starting to get my life back on track (a different one than I originally intended), but whenever I do get a kind word or gentle inquiry from a friend, it means more than I can express. It's hard to leave the house sometimes if you worry that you're going to end up facedown in the craft aisle :). And I just moved to this town right before I got sick and didn't know anyone. It's rough.

OK, more than your probably wanted to know, and I apologize if it's disjointed, I accidentally switched up my meds this morning so I'm a little off. And sorry for the long saga posting, it just really struck a cord with me.

[seanan-mcguire.livejournal.com]

It's okay that it's disjointed. This sort of thing is scary as hell, and society is really bad at coping with it. Although now I totally want to make little purple stickers with yellow dots for everyone I know with an invisible condition.

I'm so sorry you've had to go through this. I've lost time, and it sucks. I'm really glad you're getting your life back, even if it's different than you had planned.

[technoshaman.livejournal.com]

*nods* Crosslinking, because too many of my friends are in the same boat.

[seanan-mcguire.livejournal.com]

Thank you.

[khasael.livejournal.com]

I feel quite strongly about this concept. I don't personally have an invisible illness or disability, but I got dirty looks on the bus when I asked if I could sit, a few days after knee surgery (I asked my doctors for a knee brace, so if my knee decided to give out and flat-out drop me, which it did a few times, people would realize it was an injury thing, and the doctors said no, and they told me not to use crutches after the first post-op day). Generally, I look like a somewhat chubby 27 year old in average health (though I still get carded for rated R movies, so maybe I look like a semi-chubby teen in average health). My husband is significantly overweight, and has gotten the "just lose weight" line from doctors before. He went in for a sprained ankle that he twisted at work due to a customer almost running into him with a shopping cart, and the doctor, without even looking at his ankle, said "it's because you're fat", and didn't give him anything or offer any advice at all. Other than his weight, he's generally quite healthy (there was a life-threatening issue recently, but it's unrelated).

As a more severe example of what you're talking about, there's my uncle's long-time girlfriend. I can't remember the name of what she has, but it's a hereditary condition, and it generally kills you by the time you're 30 or so. She was on a waiting list for both new lungs and a new heart, but she took herself off the list, since they weren't sure it'd prolong her life significantly, anyway. She's currently receiving experimental treatment through UCLA, and she has a tiny little medication dispenser attached at her waist/hip, like some diabetics do. Otherwise, she is a healthy-looking, very pretty 29 year old, with tattoos and a punk hairstyle, and people give her the dirtiest looks when she parks in a handicap spot (she does have a permit, but because no one can easily SEE the disability, they assume she's a horrible person). It's not obvious from looking at her that my uncle's found her not breathing and without a heartbeat twice before, or that she can't walk very far without tiring, or even watch much in the way of scary movies, in case it gets her heart rate up too fast and sets it out of whack.

So, thanks for posting about this. Really.

[seanan-mcguire.livejournal.com]

You're very welcome, and wow. I wish your uncle's girlfriend wasn't providing such a reality check for people who think everyone with a disability is visible from space.

[semy-of-pearls.livejournal.com]

More 'invisible' illnesses:

Celiacs. Oh, I'm sorry, I can't eat any commercially baked goods because they will make me violently ill. I'm not picky, just want to keep moving without falling over in pain.

Lactose-intolerant. Pretty much the same thing, only this goes for most of the milk products out there.

Allergies, especially the severe types (be it peanuts or cleaning products) some of which are so severe the person suffering cannot walk into the building without going into anaphlactic shock.

[seanan-mcguire.livejournal.com]

All very true.

[lonotter.livejournal.com]

My husband passes along his sympathies and hopes you can avoid the surgery route. 10-ish years ago he herniated disks, and had a staph infection set up housekeeping. A week of steroids was bad ju-ju indeed, and the end result was a laminectomy on L3-L5. Chronic pain, oh yeah. But he can walk, which the neurosurgeon was happy to see (Eep!), and has pretty much normal range of movement. Sometimes he wishes we had handicapped placards, but most of the time he wouldn't bother with the handicapped spots.

And on a happier ending, we're both enjoying "Rosemary and Rue".

[seanan-mcguire.livejournal.com]

I'm so glad you're enjoying the book! And that he can walk. Eep.

I'm avoiding surgery as long as I can. Recovery is slow, but it happens.

[seanan-mcguire.livejournal.com]

I'm so sorry.

"Wow - you don't LOOK like you have asthma."

[wendyzski.livejournal.com]

This was once said to me by a staff member at my doctor's office.
I just stared.
They are no longer working there (can't imagine why) and my regular doc can recognize the sound of my cough from her waiting room. "A course of Prednisone and an antibiotic from Column B pls"...

Re: "Wow - you don't LOOK like you have asthma."

[seanan-mcguire.livejournal.com]

...wow. I am so glad that person is no longer there.

[kyburg.livejournal.com]

I find the random cruelty of people who have no patience with basic human frailty infuriating. EVERYBODY is going to have something to deal with at some point - you just don't know when or what. Period.

I have far too many real life examples to throw at them should someone pop off with 'undeserved privilege' crap. (Oh, my favorite is the the guy using a handicapped space with credentials, but nobody can guess the reason by looking - we'll use that one.)

I tell. Oh baby, I TELL. I can ruin a beautiful Saturday afternoon in less than twenty words, and I'll waste fifty on an asshole who can decide by looking who gets help and who gets bupkis and pissing on. Total strangers on the street. Yes, I will.

(I'm not too sure why someone hasn't clocked me either. Maybe Cliff was right - being crazy IS a good defense.)

My inner-ear does not allow me roller coasters, either. Let's go win some plushies at the ring toss instead.

[seanan-mcguire.livejournal.com]

So do I.

I'll skip the midway; it's rigged. I know, my relatives run it. ;)

[brightlotusmoon.livejournal.com]

I've got invisible chronic disabilities too (cerebral palsy, sciatica and fibromyalgia), as well as invisible chronic illnesses (epilepsy, migraines, and asthma), and I feel for you. I've been accused of being a drug addict because I take carisoprodol three times a week and thoroughly enjoy the effects it has on my pain and tension. I've been told that I don't look sick or disabled, so I can't be. Sometimes the only way I can prove my disabilities is to flash my DC Metro Access card, which is proof of disability. I've had people scoff at me and bitch me out for being too fatigued to do something. When I am walking with my cane, I am treated completely differently, because people can see that I am disabled. It makes me feel so strange.

[seanan-mcguire.livejournal.com]

See, I really don't understand why "I like painkillers because I dislike pain" makes you a drug addict, especially when it's been prescribed by your doctor to make you not be in pain. I am so sorry you have to deal with that crap. I hate it so hard.

[jhitchin.livejournal.com]

Yes, the joy of "lose weight and you'll get better." The first neurologist Greg saw told him that.

Nearly four years later, he's got new issues, the back pain is still there with a vengeance, and we're no nearer to a diagnosis for anything. A few months ago, we FINALLY were able to convince a doctor to let him try Lyrica, and it actually helps a great deal and he doesn't have the side effect he had from Cymbalta. So score one for us, but we're still working on it.

[seanan-mcguire.livejournal.com]

All hail Lyrica. I take Lyrica's little sister, Gabapentin, and it makes it possible for me to walk.

[acelightning.livejournal.com]

(I came here via a link from technoshaman.)

My very, very dear friend Ricky Buchanan in Australia suffers from a mind-boggling assortment of chronic, steadily worsening, disabling conditions. Before she reached her current state of being completely bedridden, she wrote quite a bit about "invisible disabilities". Even though her activities are severely limited now, she's still quite an activist for the disabled. Here are some links:

Main website:
http://notdoneliving.net/

Essays on invisible disabilities and other things (3 pages):
http://notdoneliving.net/writing

Dreamwidth blog:
http://rb.dreamwidth.org

LiveJournal (now only mirrors Dreamwidth):
http://rickybuchanan.livejournal.com

Please go and read her stuff. She's smart and eloquent and often very funny, and arguably one of the two most huggable people in the Southern Hemisphere.

[seanan-mcguire.livejournal.com]

Wow.

Thank you for the links.

[ladyamber.livejournal.com]

I do not have a chronic disability, but I've had severe asthma and severe allergies since I was eighteen months old, and migraines that trigger through scents and noise since I hit puberty. Thanks to the wonders that are immunology treatments and the "joy" of crazy allergies, I've finally reached a point where a cold doesn't put me in the hospital with bronchitis, I can own a cat, and a fun size Snickers bar doesn't close my throat off. I also know that growing out of allergies is atypical, and am very grateful that I'm one of the lucky ones. As for my migraines, they keep me from state fairs, make me miserable at the end of concerts, and make me need a long nap in the middle to be able to survive either.

My husband, however, has both bipolar disorder and scoliosis, which has been corrected with spinal fusion surgery. He doesn't look like he has scoliosis unless you see him with his shirt off, and see the surgery scar and how his ribcage twists to the left. Yet because of the two metal rods in his back, he's not supposed to lift more than 25 pounds.

No one realizes he has bipolar disorder, because his mental collapses aren't visible, because he makes a point to leave before they go full-blown. He has a standing prescription for Ativan when something makes him panic, and the only reason he isn't worse is because we finally discovered a medication combo that works for him.

Yet he is told by disability determination boards that he isn't disabled, because the meds work and thus is bipolar is cured. He is told by my mother that it's all in his head, and a boost of self-esteem and a couple pills will get rid of it. People look at him and don't understand how he could be unemployed for ten years, because on the outside he appears perfectly capable of succeeding at a traditional job. My husband's BD doesn't go away because we finally came up with a prescription cocktail that lets him have control of his own brain, and I wish I could beat it into people's heads until they understand what the words "chemical imbalance" means.

Sing it loud, Seanan. Just because you can't see it, doesn't mean it doesn't exist. And just because it's being managed, that doesn't mean it's been cured as well.

[seanan-mcguire.livejournal.com]

It has been sung! Keep on keeping together.

[greektoomey.livejournal.com]

While I have no herniated disks, last December the root of my right sciatic nerve somehow became impinged in my L5. My diagnosis is "lumbar radiculitis" (I like how that sounds like it could be "inflamed ridicule") and the treatment is biannual epidural steroid injection.

I am grateful that, in my case, walking around makes it feel better. But I do, to some extent, feel your pain.

[seanan-mcguire.livejournal.com]

Walking makes me feel better, and wow do I love my biannual epidural steroid injections. Without them, heads would roll.

[scholarinexile.livejournal.com]

One of my girlfriends has just been diagnosed with fibromyalgia. Talk about an invisible illness...it makes almost everything hurt, and yet a substantial chunk of the medical community continues to deny its existence. Her parents don't even believe that she's sick (and think that, if she is, it's a punishment from God for being bi and poly, but that's a whole other story). So I certainly know where you're coming from. ::big hugs:: I hope the less invasive methods enable you to get some relief.

And if I may ask...as an anatomy professor, I'm very curious about how you managed to herniate all three of those vertebrae simultaneously. That's a good trick.

[seanan-mcguire.livejournal.com]

Honestly, if I knew how I did it, I'd tell you, because I really wish I knew. It happened when I was a teen, and then it got ignored for so long that I don't remember what caused the initial injury.

[martianmooncrab.livejournal.com]

it took the Military/VA docs 25 years to figure out I had cracked my T11 & T12, then it was my Endocrinologist who figured it out, and he did that by gently running his fingers down my spine first.

[seanan-mcguire.livejournal.com]

Wow.

[markbernstein.livejournal.com]

Thank you for the reminder. I'm one of the lucky ones. I have chronic ulcerative colitis. Which, when it flares up, is both awful and invisible. The only way to stem the internal bleeding is weeks on Prednisone, which leaves me puffy, irritable, and almost totally lacking in stamina.

But several years ago my gastroenterologist put me on an anti-inflammatory called Asacol. I haven't had a serious flare-up since. In fact, the disease has gone into sufficient remission that I now only have to go in for a colonoscopy every two years, instead of every year.

So for you, and everyone who posted here, I'll keep hoping for advances in medical science that will make your lives better, too.

[seanan-mcguire.livejournal.com]

I hope medical science keeps making everyone's lives better, until we wind up a population of whole, healthy people. Won't that be amazing?

[cleothyla.livejournal.com]

I know I have invisible disablities but the only one offically diagnosed is TMJD.

I will usually ask if I can hug someone, because I get nervous when strangers and some friends hug me without warning.

[seanan-mcguire.livejournal.com]

Good approach.