After writing about Scanxiety, another friend asked about Pyrrhic Victories in chronic illness. I am nothing if not amenable to suggestion, so, here goes.
A major problem with how healthy people view disabilities and chronic illness is not only the inherently problematic binary view of health — either you’re dying or you’re healthy — but the binary, “win/lose,” zero-sum mentality that blinds them to some very real, and unfortunate realities those of us with chronic diseases face. Let’s leave financial issues aside for a moment (we’ll get there, but let me remind you, hospitals do kick people out into the street, people in America die from preventable diseases all the time, and your insurance can absolutely dictate what quality of treatment you’ll receive)(Why don’t we get more immigrants from countries with universal healthcare?), and just look at some of the long-term physical and mental issues some of us face that make it a little hard to say, “Yeah, I had cancer, no biggie.” Imagine you had an incurable, non-fatal condition that required you to get frequent check-ups and take (for this hypothetical) affordable medication regularly? Would you describe yourself as “healthy?” When people asked you how you were, would you respond honestly, knowing that it would involve a 20-minute explanation ending with, “So, I’m still waiting to hear back from them,” or would you just abbreviate it to “Fine?” If that seems like a nasty shock, I’ve just described arthritis, heart disease, diabetes, depression, and any number of so-called “invisible illnesses” that an increasing number of Americans suffer from? Would you feel totally welcomed into society, or would you downplay it on first dates and job interviews? Remember, this is at the extremely shallow end of the chronic disease pool.
At the deeper end, especially with my tribe; let’s say that you do have a chronic disease that, if left untreated, will progress and kill you. Good news, you can stop that progression, but all it will cost is the use of your left leg. Or the hearing in your right ear. Or your ability to go to graduate school. Are you comfortable with those costs? My disease cost me two out of three of those (if you’re really wondering, my hearing’s fine), I don’t know if it’s worth it. And that’s the elephant in the room that so often isn’t discussed with diseases — the option isn’t always between “quality of life” or “quantity of life” (which we are getting marginally better at addressing), it might be between “reduced quality of life” or “utterly hellish quality of life, followed by death.” Nobody in the world wants to make these decisions, but those of us with a dangerous disease have to make them on a regular basis. What if the decision is, “A few years of progression-free living, but at a personal cost so grievous that you might, in quiet moments, actually regret being alive?” That was certainly my case after my first tumor required such invasive neurosurgical intervention that it caused dramatic, detectable brain damage that directly interfered with my life options? What if you, like me, didn’t find out that was the cost of that decision until after it was made? Don’t get me wrong; I don’t feel suicidal or anything, but I was not informed of the full extent of the costs of that decision before I made it. And it only got me six-ish years tumor-free. Six years of a severely reduced intellectual capacity would be considered by most surgeons to be a decent swap. As someone who’s been there, it absolutely was not worth it at the time.
What if the costs are being immunocompromised for the rest of your life, and all of the inherent risks and problems entailed by that? Large public gatherings are out; malls and multiplexes are out. And you need regular specialist consultations and a steady supply of (harsh) drugs. This is cost my leukemia friends, transplant recipients, and my Crohn’s Disease friend are paying. Sometimes we sacrifice so much just to exist that it’s easy for able-bodied people to simply overlook them. And these are just the tip-of-the-iceberg, readily-seeable costs; forget living your entire life so that you can retain access to healthcare and life-giving medications. And, with it, the grim, ever-present knowledge that, in a best-case scenario, you’re just fighting a holding action. Eventually, someone in a white coat will screw up, or the disease will become resistant to treatment, or your immune system will reject that shiny new heart. In what weird mental universe could anyone count that as a solid “win?” “Yes, I am currently No Evidence of Disease, but all it cost was my hopes, dreams, future, and sensations on my left leg, BUT, apart from that, it’s all great.”
It must be noted, I am absolutely not arguing that patients with dangerous, costly, or side effect-riddled treatments should give up and let nature take its course; it’s to make able-bodied people realize that disease is rarely, if ever, a “one and done” thing. We need to start looking at all diseases the way we view HIV or herpes infections — the question mustn’t be, “So, you’re fine, now, right?” It should be, “Are you successfully managing and navigating your disease? Are the costs of that bearable?” If your ultimate motive is to help your disease-ridden friends stay alive, the point of this conversation is to ascertain the specific challenges they face, whether they’ve reached the breaking point, and what you can do to keep them from reaching it (HINT: If we’re sick, we’ve got bills that are stacking up, even though some of us might be too short-sightedly proud to ask for help with them, we certainly wouldn’t refuse a free meal)(unless we’re immunocompromised and need to know the life history of every molecule we put in our body)(okay, so, maybe take it on a case-by-case basis). In Nick Hornby’s superb book, “A Long Way Down,” which is about people suffering from suicidal depression, one character asks another if they were some sort of wish-granting genie, what would it take to make life bearable for them? Then that character starts adding limitations and restrictions on that hypothetical genie’s power to figure out if there’s anything they could, realistically, do to help their friend (SPOILERS: there is. SPOILERS FOR YOU AT HOME: There’s always something you can do to help your sick friends). Which isn’t a bad move to help your sick friends move from “Phyrric Victory” to, “Well, that was awful, but it’s now mostly-bearable.” I have a friend whose aunt is in a medical crisis and wishes to discontinue treatment. That’s when the real terror and realization of what’s in store for you holds; and, even though I can’t motivate everyone to undergo every treatment possible (again, knowing what death by brain cancer looks like provided an unbelievable motivation to continue treatment no matter what), I can recommend just asking, “If I could grant you a wish, what would it be?” And then start working backwards and restraining that power to determine what you can do. And I realize that not everyone will make it, nor be motivated to keep undergoing treatment, but I do know that we can make some effort make the new world of ashen twilight chronic disease survivors dwell in somewhat more inviting. At the really deep end of grim-dark survival; let’s say that your financial situation is in a constant state of disruptive upheaval because billing errors ensure that some obscure debt collector is out for some $400 X-ray from five years ago, ensuring that your credit rating will always be crappy, which will put housing and carer options forever in question, and you have really expensive, exotic medications or treatments that you need on a very regular basis, or you will die; and there’s virtually no way to escape constant reminders that your status in society is currently being held hostage by a disease you had no choice in, anyway, and which will inevitably return? How do you motivate us to pick up that gun and charge up the hill?