Ask a Survivor: Ableism in the Time of Chronic Disease

Q: What does it feel like to be in the top 5%?

I was asked this recently about my almost-three-year survival of glioblastoma. Which, in conjunction with several other things, really got me thinking. The simple, short answer is, like climbing Everest or K2, it undoubtedly seems daunting and impressive before and after you’ve done it, but during the attempt, you’re a little too focused on more-pressing issues to really think about it. After you do it, of course, it’s impressive enough to boast about, even though, quietly, you kind of shrug it off and try not to think about that sherpa who got devoured by a Yeti on the way up. What really acted as the catalyst for this essay are two disparate things; the first is that someone on social media pointed out that physician training is amazingly ableist, and produces a severe form of ableism within the medical profession that encourages physicians to diminish their patients’ problems, which tends to worsen them. This is a common problem with adolescent and young adult cancer survivors, who are such a rarity that we’re usually ignored until we crash and end up in an ER (this actually happened to another friend of mine, a young anaplastic astrocytoma survivor, who was only diagnosed after severe seizures brought him to the ER)(pro-tip; by the time any non-traumatic ailment lands you in the emergency room, it’s likely progressed from “treatable” to “likely fatal”).

The second catalyst here is July 1. This is the day when all medical students, interns, and residents get promoted and can start interacting with patients. I know this because every July, I get an MRI, and I get to tell my story to a whole new batch of fresh-faced medical personnel, who, inevitably, fail to ask the correct questions.

A bit of personal background; I have a Master’s Degree in biomedical science, I was briefly in a Caribbean medical school until bad grades and cancer (the first likely caused by the second) forced me out, so I know that there is a ton of training about the types of questions physicians are supposed to ask, and how they ask them. And, in almost every case, these questions are supposed to be molded into a slippery question that’s easily misinterpreted by those with ABI or folks on the autism spectrum. If you want to know why that’s an immediate problem for the biomedical industry; imagine any other branch of science or academia in which autistic, ADHD, and other, similarly-minded folks were simply barred from participation. Computer science, modern mathematics, and most of physics simply would not exist. Many, many years ago, when I was a bioinformatics intern, one of the professors asked the fascinating question, “Why is it that we’ve seen fewer biomedical break-throughs in the past decade than at any point in post-Renaissance history?” I was abled then, so I scratched my head like every other able-bodied white kid. Now I know; it’s because that particular talent pool has taken us as far as it will go. Able-bodied people aren’t going solve blindness or paralysis for the same reason that the DoD consistently mismanages campaigns — the on-the-ground expertise needed is blocked from getting high enough on the food chain.

Physician training is all about learning intriguing technical details that able-bodied professors think will make a good physician, and the licensing exams to practice medicine are similarly designed and administered by able-bodied groups. And, whenever I meet third year medical students, their ignorance shows. They always want to know what symptoms were the tells of this disease. Which would be important, if there was a human future in diagnostics (there isn’t; more and more frequently, hospitals are supplementing diagnostics with AI, because it’s more-reliable and better-informed than most humans)(it’s also cheaper to hire another IT guy and fire a few GPs). And, it’s symptomatic of the deep ableism that permeates not only medical culture, but our entire culture, because the linear story they want to hear is of someone who gets a diagnosis, gets standard treatment, and then goes on to lead a rich, full life. The truth on the ground is simply this: once you get a chronic condition, that is now an enormous component of your life, in a way ableds can’t start to comprehend. This, “The disease is now the overriding factor of your life” is so deep, a family friend who was formerly a well-respected, well-paid physician became some specialist in the police force (for everyone worrying whether I hang out with agents of a fascist system, he acts as some sort of trainer/evaluator in deescalation techniques or some similar psychiatric-related aspect) after he was treated for some form of acute cancer and discovered he no longer had the stamina for the job, but needed the health benefits.

In medicine, this leads physicians to overly-rely on what a patient looks like (I have a friend with Crohn’s Disease who was misdiagnosed multiple times because she looked healthy)(I unintentionally gamed that system by getting into extreme physical training, so no one could accuse me of being too frail for treatment, which is a common problem among brain cancer survivors). Even in my own interactions with my oncologists, the Warlocks, this lead to me giving them incomplete information. No, I never lied to them, but I knew from experience that physicians are discouraged from believing overly-florid descriptions of pain, because that’s correlated with psychosomatic issues. In my case, experimental infusions gave me severe, excruciating pain, but I backed off on most of the adjectives, because I needed them to take me seriously if things got bad, and I know patients quickly get a rep as a troublesome patient. So, for all of my physician friends, patients use florid language when they’re in a situation for which they have absolutely no point of reference (imagine how H.G. Well’s time traveler from the 19th century would try to describe iPhones to his peers, and you can start to appreciate the gap between chronic disease patients and ableds). Just for a quick point of reference, everyone in an undergrad premed program is familiar with the term “neuralgia” (when a nerve is compressed or pinched — if you’ve had a limb “fall asleep,” you’ve experienced it). Here’s what the dry terminology leaves out: Do you know what neuralgia that lasts for more than 10 hours feels like? It feels like you’re on fire. I can personally attest to that, having burned myself on a few camp fires and stoves. So, I just simplified my descriptions and said, “It hurts like hell,” which is technically true, in the same way that the statement, “a cargo jet is large” is true — it fails to adequately convey the extent of the situation. On the other hand, after the second or third cycle of treatment of me griping about infusion pain, the Warlocks didn’t protest when I started asking about CBD and medical marijuana, so maybe that one paid off.

So, human-based diagnosticians, as I’ve mentioned, are unreliable and are on the way out by dint of humans operating from a limited experience (and it’s damning that in every survivor support group I’ve gone to; the most-frequently mentioned complaint is how far removed from the human experience we are; to the point where most of us only feel safe fully expressing ourselves to other survivors). The future of medicine — what machines can’t do, yet — is in the ability to learn from patients and correct/alter treatment plans in real-time to suit a patient’s needs. And, for that one, physicians really do have to talk to their patients, listen to them, and, most-critically, believe them.

In the first month of med school, one lecturer pointed out that the difference between empathy and sympathy is that one is understanding what someone is feeling, the second one is actually feeling it. To return to my mountaineering metaphor, if you’re happy with postcards from Kathmandu, kudos, but you have to know on some level that those images don’t adequately capture the climb or the sensation of being literally on top of the world. Similarly, one of the best oncologists I know, Radiation Oncologist (for everyone wondering; I do know all of my physicians’ names, but I think most of them prefer anonymity, so I write about them using their job titles), is almost telepathic and blurs the line between sympathy and empathy. And, it’s worth noting; I don’t think she’s a sympathetic soul because she’s a good doctor; I think she’s a good doctor because she’s sympathetic. And, she was the one who stepped in during radiation treatment and said, “If your pain and fatigue is interfering with your ability to function, as it sounds, I want to put you on something.” AI can’t do that, yet, as far as I know. Or AI wouldn’t be able to make the leap from, “He was reporting a pain level of 2 last week; this week it’s at a 5, and he’s mentioned being awakened by it; he’s probably putting on a stoic face when there’s no need,” (Another pro-tip; all cancer survivors, everywhere, are being stoic unless we’re in the fetal position, sobbing; an ableist society teaches us we all have to be on our feet and productive at all times). And that helped get me through treatment.

For everyone in the medical community reading this, the point is; you absolutely can not stop at delivering a diagnosis, or else you are begging to be replaced by HAL 9000, or manipulated by patients who figure out you never ask any follow-up questions if the blood pressure and heart rate is normal. Your job is to figure out your patients, not their illness, and figure out not only what they’re telling you, but what they’re afraid to tell you (nurses are there to help with that). For all of my friends on Planet Cancer; the medical system is absolutely a system with gaping flaws and blindspots, and, within a few months of landing, you should be able to spot and exploit those holes to get more treatment, get better treatment, etc. Not that I’m advocating lying to your physicians or anything that dramatic; most of the time, you can get results simply by going to the gym frequently, losing weight, and figuring out how much to tell who, and when.

Science journalist, cancer survivor, biomedical consultant, the “Wednesday Addams of travel writers.”

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