Chronic health issues (there’s that ghastly word again—honest to goodness, why couldn’t they come up with a more cheerful-sounding one? I mean, a “chr” and an “ic” in one word? So harsh-sounding) are, obviously, very tricky things to deal with. Not merely, however, from a physical or medical standpoint. Sure, it is very hard to wobble around and fight for so many steps you take, and it is more than a little maddening to work so hard to get appointments with doctors, only to be stymied by either their own lack of experience with your bizarre problem, or the arbitrary insistence of the insurance of the Land of the Free and the Home of the Brave that you’ve had enough care for the time being. But, the thing is, I’m pretty sure a lot of people have talked and are talking about that, and I can’t help but feel it doesn’t need to be reiterated. What I am surprised I’ve never seen people talk about is the psychological toll of chronic problems. Specifically, the uncertainty that comes along with them, and really any health condition that they had to invent a special word for (CHRONIC) just to explain they don’t really know what it is.
The reason I went for most of my life without ever really discussing my health on the internet in detail (until the advent of this blog, obviously), aside from my own unending fear of complaining and general personal baggage, was that it was kind of impossible to stay on top of what was happening with it. If I’m perfectly honest, it kind of still is. You may notice I haven’t blogged since last October. There is so much uncertainty and volatility that is inherent to chronic health problems—or at least my chronic health problems—and it leaves me in a rather awkward place when trying to talk about them, or even process them internally. For example, last time I blogged, I was having seizures, was 90% sure I had epilepsy, and was resigned to having it for the rest of my life. I don’t care who you are, that’s not an easy thing to come to grips with, but nonetheless I like to think I had my head wrapped around the idea to some degree. While I may have ranted and raved somewhat on this corner of the internet, deep down inside I was ready to live with it. Rolling with the punches and all that. It sucked, as I was the first to admit, but I’d managed to process it enough to feel like I could deal with it.
A few weeks later, though, lo and behold, I didn’t have epilepsy. I was technically having seizures, which was why I’d flailed all over the table in the test that classically determines if you have epilepsy, but they were actually being caused by the meds I was on. Obviously, that was good news (“I don’t have epilepsy, yaaaay!”). The thing is, even though it was good news, it was a huge shift in the world as I knew it. I went from, “I’m having horrific seizures that throw me all over the place, and I’ll realistically have to deal with them for the rest of my life,” to, “Oh, I’m just having another inexplicable 1-in-1,000 reaction to my meds. I’m actually going to be fine.” Even if it was relieving, it was also terribly disorienting insofar as trying to process this huge, harum-scarum thing we call Life.
And that’s the thing with chronic—or at least volatile—health that I feel isn’t talked about enough: The sheer uncertainty of it. It’s hard enough to resign yourself to having some bizarre, horrible problem that’s popped out of the blue and is having a field day with your life, without having to then completely reevaluate everything a few weeks later when it turns out that problem doesn’t exist (at least anymore, or possibly ever, who knows, the doctors are just as clueless as you).
A very common issue people with chronic health struggle with (at least as far as I’ve seen) is self-doubt. When you have mysterious, whacked-out health problems no one really understands, let alone has a name for, you can’t help but wonder if it’s all in your head (especially since plenty of especially incompetent doctors will actually tell you that directly), or you’re somehow subconsciously making it up or some pseudo-psychological paranoid drivel like that. Even if people never suggest it, you still end up worrying about it, or feeling like people are implying that you could be a whole lot better if you “only put your mind to it” (just to be perfectly clear, no one actually wants to be chronically ill; no one is going to pretend they are or exaggerate their problems simply because they want “attention.” I’m sorry, that’s just stupid. Having agonizing, weirdo problems isn’t some kind of pastime or something, and whatever “attention” it may bring is usually more humiliating than anything else. If I could magically be healthy just by taking deep breaths or achieving some attitude of magic-unicorn-pixie-dust-positivity, then I’d do that. Rest assured, no one in their right mind would deal with traditional doctors or the American medical system unless they desperately wanted to be healthy).
This self-doubt problem, which is probably best displayed in that overlong parenthetical rant I just delved off into, would honestly probably be hard enough to cope with mentally even if I just had one problem that never changed. Obviously, though, as I was just talking about, I have loads of problems, and they’re constantly changing, evolving, re-emerging, and inexplicably vanishing or lessening without much ceremony. To go from “Recovering” to “Freakishly Epileptic” to “I Guess Recovering Again” in a space of weeks is incredibly hard to process on its own, but it becomes even worse when you’re constantly grappling with self-doubt as a result of your mysterious health being so mysteriously volatile.
And this is, again, why I traditionally never talked about my health online, or at least one of the primary reasons. I made a blog post all about how much having seizures sucked, and then a few weeks later the seizures were gone and it was chronic business as usual. Trying to deal with that personally is hard enough, but trying to keep people updated on it is even harder, especially if any of those people happen to have sympathies for the “It’s All In Your Head” school of psychosis. Even if nobody ever comes out and says, “So, you had epilepsy for two weeks, and now you just magically don’t? Surrrreee…” in those words, or even any words at all, being the insecure man that I am, I will be unable to shake the idea that people are thinking exactly that. Even if it’s totally irrational (let’s be honest, pretty much all worry is totally irrational, because it achieves diddly and lessens your chances of achieving squat), I’ll still worry about it. It’s part of the big, ugly, confusing package that is chronic health, I guess.
As an addendum, I would like to say that prescription medication sucks heck, because the seizures were all totally its fault (though nobody warned me the particular med could cause seizures, and apparently it has such a minuscule, vague chance of causing them that I get to feel uncertain and self-doubtful about it anyway). Oh, and my hair stopped falling out ages ago, so it was apparently a random fluke (maybe caused by the stupid amount of stress I have to deal with because of all this?).
The good news is that I’m no longer medicated (FINALLY!) and that’s helped a lot. By all accounts, I was having super intense reactions to my meds (even though one was “as old as dirt” and allegedly harmless—that was the one that gave me seizures—and the other was just some stupidly simple asthma drug. That asthma drug, by the way, was evil incarnate, and caused stuff I still haven’t had the guts to talk about online yet).