(no subject)

[tylik]

rowanf posted about Invisible Illness Awareness week.

Most of you know I have a spine injury. Actually, that's just the most pressing of a bunch of car accident related injuries - lots of scar tissue in the muscles of my back and shoulders, damage to ligaments (fairly severe in the case of my right SI joint, and possibly other places). A collection of nerve impingements, many transitory. The spine injury involves a herniated disk with a lot of nerve irritation - probably both mechanical and chemical. Some of these issues are compounded by my hypermobility. (Though I'm not sure I entirely buy into the "pathological hypermobility" bit. The hypermobility itself isn't a problem for me as long as I maintain adequate muscle tone, which I do. It may have made me more susceptible to certain injuries... but hey, it may have made me less susceptible to others.)

On the surface, I generally appear to be in pretty good shape. This is partly because I'm both very mobile and active, partly because I have a high pain tolerance and because being in pain often doesn't show in my social presentation, and partly because the things that cause me the most pain aren't what people tend to expect. Running, biking and doing martial arts tends to make me feel better. Sitting at a bench or a computer is more problematic. But sadly those latter activities are wrapped up in some of my favorite things.

Oh, yeah, and I'm on a ton of drugs. Well, okay, I'm on a ton of gabapentin, which works very well for neurogenic pain. It also has cognitive effects, and I don't like them. But even decreases my dose has even more cognitive effects, not to mention the pain. (Well, directly because of the pain.) So. I'm being treated, I have some confidence we'll come up with some kind of sustainable longer term resolution. Meanwhile, life goes on. I guess I could be pretty upset about the current state of things, and I have been when in similar situations before. This time I'm not.

I most want to write about what a relief it has been to me to have such a straightforward and socially supported diagnosis, and by contrast how hard it was when I didn't have such a diagnosis and how badly many people are treated. For a long time, I just hurt. It even took me a while to work out that I hurt, it was a physical problem, and it wasn't just that I was unhappy in my job. (There's history and upbringing here, I'm not going into it for the time being.)

For a long time, it was pretty unclear what was going on. Including a lot of things that seem pretty obvious in retrospect. It's weird to realize that the headaches from occipital nerve entrapment happened on and off for well over a decade and were never treated even by the pain management doctors I saw until a few months ago. (Similar things could be said about how long it took to isolate the c5/c6 nerve root irritation.) It's not exactly a matter of regret, but almost more of awe over just how much that could have changed my life. Not only in a good way - I might have tried to stay I Microsoft longer, say.

In the meantime, I had people trying to diagnose me with fibromyalgia, over and over again. Depression, constantly. (Mostly when the pain was bad enough that I'd cry easily. Oh, you must be depressed.) I'm not exactly against such a diagnosis, though it didn't really match my own experience. I'm even all for using anti-depressants to treat my symptoms. Except in my experience they don't work. I fought the fibromyalgia diagnosis partially because it seemed to carry with it significant stigmatization, and partly because it seemed like if I got it no one would look for a root of my problems, they would just treat the pain. And pain management generally didn't seem to be a good strategy for me. I did have some intuitive sense that what I had going on was specific chronic pain rather than generalized chronic pain, but in retrospect sometimes that seems mostly like a matter of faith.

Meanwhile, there were random hints that I might be accused of malingering. Or drug seeking (well, this one was very faint, and mostly a product of seeing flyers and the like - I was resistant enough to taking opiates that it didn't really come up). I had horrible battles with insurance companies, where they would randomly deny my claims - and eventually reverse themselves, but only after a lot of energy expenditure that I really didn't have. And only after I spent a lot of time having to face that these random strangers had power over whether I was going to be in vast overwhelming amounts of pain, or maybe sort of getting by. Then there were the issues about getting medication refills in a timely manner. If you haven't been there... well, imagine that you did everything right - called several days in advance, had everything lined up. And yet the refill doesn't get phoned in, and there it is Friday night, and you know that if you don't get it by midnight you will be in horrible pain, and everyone is going home for the weekend, and no one will take responsibility for getting it done. And this doesn't happen just once, but over and over again.

Then there was the bit where the company that was supposed to provide me with disability insurance while I was on medical leave from my job at Microsoft had me take a physical evaluation - which was more or less medically supervised torture. They quickly determined that having me do a lot of the heavier tasks put my heart rate into scarily high levels, so they stopped that and yet still ended up reducing me to a little huddled pile on the floor. (And weren't allowed even to bring me an ice pack to reduce the inflammation in my neck while I waited for my ride.) The evaluators said that I was only able to perform the lightest of tasks - and the insurance company said "Great, we'll send her back to working on computers full time." (They did no functional testing of my ability to do desk work.)

Seriously. I did get that situation resolved - one doctor wrote some very sarcastic letters, actually. But then, another doctor wouldn't touch it with a ten foot pole. Not because he had doubts about my physical condition, just because he was scared of the insurance companies. (He was pretty direct about this. But what, like I was in a more empowered position to deal with them?)

Then there was the neurologist who told me that my whole problem was that I was sufferring from PTSD, and I needed to lose 100 pounds. Keep in mind, neither of these things related to his area of expertise (and losing 100 pounds would have had me losing lean body mass). The PTSD was because, again, I ended up in tears during a physical evaluation. (That he was yanking and pulling on the parts of my spine that are damaged apparently doesn't count in this.) (Ironically, I do have some symptoms of PTSD. I think I mostly know what this is about, and I don't see it as being much of a problem in my life.)

Throw in some discussions of chronic fatigue, a lot of advice that I should quit my job (is it only because I'm a woman that just not working seems like a viable option?)

And all of those potential diagnoses are very hard to explain to people, and often are viewed with suspicion rather than sympathy.

As an invisibly disabled person, now, I'm in a position of great privilege, really. I have a pretty straightforward injury - I can whip out my phone and show people my MRIs. (I mostly do this to terrorize my anatomy students.) I'm quite active, and have more general physical capacity than most folks, even if I'm limited by my own standards. People, at least to my face, generally say that I'm stoic and determined and shit like that. I'm afraid, sometimes, that people don't take the cognitive effects of the drugs seriously and are increasingly thinking I'm kind of spacey and dim... but as far as I know that's not a major problem, at least at this point.

I gotta say, having this kind of social support seriously, seriously takes the edge off of dealing with all the physical crap. That's not the only reason this episode of "spine takes a holiday" is going much better than previous ones, but boy do I notice and appreciate it.

By corollary, it bothers me how much stigmatization there is of people who have squishier diagnoses, less publicly supported diagnoses, or not diagnoses at all. Let me be clear: when I say squishier diagnoses I am not judging the person, but the medicine. I don't think creating categories of diagnoses for chronic pain without known cause is a bad thing in itself. My experience, however, is that many physicians find the lack of known cause frustrating, and take a lot of that frustration out on the patients.

Actually, this mechanism of misplaced frustrations is more common than just around diagnosis. Often physicians become annoyed with patients if the treatment they prescribe doesn't work - or because they don't have treatments to suggest. I think it's pretty easy to understand how this could happen, but boy does it ever suck if you're the patient in question.

So I guess, be aware. That someone doesn't have a solid diagnosis doesn't mean what they're going through is less real. Being failed by the medical system isn't their fault. (And may or may not be the medical system's fault. I am highly against people being dicks, but on the other hand there is so much we just don't know about how the body works. Some of what has improved my situation and my diagnoses have been straightforward improvements in technology and understanding.) Being diagnosed with something that's a placeholder because obviously a lot of people have problems like this but we don't know why is similarly not somehow a mark of having a less real problem. It's kind of amazing how much stigmatization there is. Because we don't understand or can't treat this, people should be treated badly?

I sometimes end up in the weird situation of being asked about other people's invisable disabilities and how to deal with them because it appears to some people that I deal with mine well. (I don't know how you'd even evaluate that. I like my life. Many things are outside of my control. *shrug*) I know what's worked for me. I have some clues about posture and support and certain kinds of pain management... but it really comes down to things that have worked for me, that might also work for others, but might also not. In the end, I don't know. I can't know anyone else's situation. I can't know if what has worked for me is portable. I don't know what is optimal for another person - I only have some vague heuristics about what is optimal for me.

Maybe we should just try to be good to eachother.

(Oh, yeah - and really I'm too busy to have written this. Oh, well.)