I've personally dealt with the "mystery illness -> finally find an answer -> great, how the fuck am I going to pay for it?" thing far too often. It is infuriating to an absolutely insane degree. I would've talked about it if this thread were called "thread for being deeply, potentially fatalistically worn out about something," but I guess this is a good opportunity to. This pattern has robbed me of about 50 - 75% of my 20s (I'm 28 now) and definitely aged me beyond my years.
A short list of the highlights:
-Getting chronic prostatitis (yes, it's what it sounds like) at age 19, the youngest person ever in the world to be formally diagnosed with what is pretty much by definition an old guy's disease; and then spontaneously getting better, which also never happens; and then enduring being poked and prodded in places you really don't want to be poked and prodded for the rest of my college career by Harvard Med because I was a medical mystery. Was happy to do it in order to advance medical science and potentially help the poor soul who ends up in the same position, but man. Do not recommend. Needless to say, this kind of stuck a wrench in my love life for a few years. The long and short of the symptoms is that it felt like I was getting kicked in the balls, repeatedly, for about 15 months straight.
-Tendinosis (not -itis, which as most of you probably know means "inflammation," and usually acute; -osis means "deterioration," usually chronic and permanent) of many of my tendons. Most likely caused by Cipro, an antibiotic that you should never take unless your life literally depends upon it. This ruined my very promising guitar career, and is what caused me to pivot to composing.
-The years-long battle against various, strange symptoms (all of which Teague has been privy to -- I don't say this enough dude, but you are such a good friend, jesus christ), which after ~5 years I've finally nailed down to a combination of:
-a wheat allergy, which for a time I thought was IBS (annoying, but once you know it's easy to treat), and...
-sleep apnea (which caused me to clench my teeth at night, which caused me to develop +/- 7 separate tinnitus tones ringing in my ears 24/7, despite me being the most protective person about my ears that you will ever meet...figuring out that cause/effect chain took so fucking long). This one is a great example of "shit, how will I pay for this?" because insurance decides that it's either dental-based or...whatever the term would be, I guess "rest of the body and thus under the medical insurance umbrella-based," whenever it's convenient for them to not pay anything for my treatment (which has included things like MRI's to rule out brain tumors causing the tinnitus -- because, again, it's definitely not caused by loud noises, despite me being a musician). Tinnitus, too, is the only one of these issues that truly made me consider suicide. I wouldn't wish it upon my worst enemy. It's a prison in your own head that you can never, ever escape, but you will always worry about it getting worse. And there's zero hope of a cure or even treatment. Every doctor in the world will just tell you, "sorry that happened to you. Hope you can find a way to deal with it" at best, or at worst will say, "it won't kill you, get over it you big baby." In those moments I really had to resist the urge to get violent. Having someone smugly tell you to just fucking deal with it, asshole, when you had just considered taking a head-first dive off your third-story balcony the day before, just to get some fucking peace and quiet, is a tough pill to swallow.
-Incorrectly being diagnosed with ALS, and going through about two months of what I can only describe is the deepest, darkest place a person can go. I had to accept that I was going to die via the disease I had feared most since I discovered Jason Becker the guitarist back in my shredding days. And then I was ripped back to the living -- false alarm. That was over two years ago, and I've only recently begun to move past it. The funny thing is that this was the opposite of all my other medical issues, where even just finding or explaining what was going on was the tip of the iceberg; this was explained immediately, to the most extreme degree, incorrectly.
So, FP78, I feel you. Having to pull medicine kicking and screaming past the "I dunno, fuck your life I guess" phase and their tendency to treat symptoms instead of the cause (if I hear the bullshit "we're here to ease your suffering, not fix the problem, and that's what medicine is for" one more time...like, sure, I get it, but also fuck that entirely) is one of the most infuriating things a person can ever deal with. It's times like these you realize that the medical community is really just not all that advanced -- or not as advanced as we tend to think it is when we don't have to deal with it. Yes, I get that it's, like, the most difficult thing humans try to do. I don't mean to take away from anyone busting their asses their whole lives trying to help -- they're angels and we all owe them our gratitude. But it's depressing to realize that most medical advancements that we tend to think of as being examples of humanity's ingenuity and are representative of some steady and noble progress are, in fact, a few accidents where some dude ran into some, relatively speaking, extremely low-hanging fruit. It's like comparing Newtonian physics to quantum physics: realizing that Newtonian physics is low-hanging fruit doesn't take away from the ingenuity required to get there -- it just underlines how fucking far we have to go, and that as we get farther and farther into ___ field, the rate of progress inevitably slows down. It's a tough thing to accept.
Even worse, it's not like the doctors who say "there's nothing we can do" are lying. That's the other difficult pill to swallow: that sometimes there is nothing anyone can do, that you have been dealt a shit hand, say goodbye to your old life and try to have fun. It's easy to fall into victim-hood -- I know I did -- and to blow it up, to zoom out and see the injustices of the world, like all those terrible people who get great things without even deserving it -- let alone deserving, if anything, a fate in the opposite direction -- while you haven't done anything to deserve your fate. It's so easy to end up in a bad mental space, because all your justifications for being there are truthful. It's a hard place to leave, especially when, once you climb out, you're forced to go there again and again and again. It becomes comforting to a degree, which is the worst thing of all.
And on top of that, the absolutely broken system it all sits on top of. Inefficiency like you would not believe, all the wrong incentives in all the wrong directions, doctors operating on obsolete research who haven't updated their skill-sets since they were in medical school 30 years ago but won't listen to a single world of well-informed arguments simply because They Are The Doctor And You're Not (I realize I'm generalizing; I've been fortunate to have been treated by a handful of incredible doctors, but the road to finding them is paved with uncountable people who have absolutely no business doing this for a living). The entire medical system is absolutely broken from top to bottom, but the sad reality is that it's probably the best we can hope for, because no matter what, Difficult Problem + People = Complete Shit Storm.
I could go on and on, but anyone who's spent serious amounts of time dealing with medicine and hospitals and the whole thing knows exactly what I'm talking about. Sometimes I really thought about ending it all -- tinnitus was the worst of that, but I entertained the idea from time to time, tinnitus notwithstanding. Not because any of these problems in isolation was worth doing that -- they are, all things considered, not a huge deal. I'm fortunate to be a white guy in a rich country. Things could be so, so, so much worse.
But it was the frequency, wave after wave after wave, and the feeling that everything in the world had conspired to make it as difficult as possible to even find a single answer or even a single truly helpful person, let alone to solve it or even a reliable way to deal with it that doesn't itself bring along unacceptable unknowns (for example, the Cipro I took that most likely caused by tendinosis [and also peripheral neuropathy that causes pain to this day -- an extreme and totally atypical case of this is what caused the investigation that eventually led to the incorrect ALS diagnosis] was to treat the prostatitis -- it was a shot in the dark, given that there was no evidence of bacterial infection at all, but that's the unfortunate reality of chronic prostatitis). The apparent but completely unpredictable domino effect is exhausting. It turns you into a shadow of your former self, because day in and day out you're just dealing with this awful thing that you never asked for. You inevitably lean on some people too hard and they abandon you, and even though that's painful, you can't truthfully blame them -- they've seen how dark and difficult life can be through you, and they're a care-free 25 year old blessed with perfect health, and they're just not ready to go there yet, and they know that they too eventually will.
I've since found a way to deal with all of these issues (and more -- again, this was just the highlights) and for the first time since about when Obama was elected, I finally feel medically stable (he says as he knocks on all the wood in the world). Along the way I've basically cut out everything that isn't healthy, because why tempt fate? I'm basically done with sugar, can no longer eat wheat even if I want to, hardly have alcohol or any other drugs, take sleep very fucking seriously now, to the point that over the years I've inched away from being a film composer (doing this job and getting healthy sleep are mutually exclusive).
But shit, it changes you. It really does. I can honestly say that I'm a less fun person than I was ~a decade ago. I get angrier faster. Small setbacks are harder to take -- the small waves just remind me of the big ones. My resulting mental health issues ballooned to critical mass a couple years ago, so there's that (though, that too has been dealt with and is manageable, but is an ongoing issue).
I guess it's called growing up. Everyone has their shit, truly, but I got wave after wave of shit for years and years. There was so much, so frequently, all while trying to live up to my own ambitious ideal of myself, so at 28 I sort of fell like I'm looking back on a very, very long life. It's disorienting, but not necessarily a bad thing -- I feel like an old man who has woken up to find that he's gone back in time and is youthful again. I now truly see the value of health, and intend to keep as much of it as I can for as long as I can.
Apologies for the novel, but FP you hit on what I guess I am deeply, deeply worn out about. I'm so sorry you and your wife have to go through that. But there is still happiness to be found, even though it can be very hard to see. Let me know if you ever need to talk about it.
Last edited by Alex (Yesterday 23:11:55)