I had a visit recently with the most amazing diagnostician I’ve ever met. This pain doctor, who himself said that he doesn’t know much about migraines or their treatment, nevertheless knew all about & diagnosed mine on our first meeting, in less than 30 minutes! Amazing, eh? I went to a neurologist back in NC for almost as many years as I had minutes with the new guy, a neurologist who is a headache specialist & keeps up to the minute in the field of pain & migraines. That neuro saw & examined me hundreds of times, did all kinds of tests, tried literally dozens of medications, procedures, and treatments, had me keep HA & food & pain & all sorts of hour-by-hour diaries, consulted with fellow headache specialists, and in the end all he was able to do was to declare the migraines intractable and try to treat the symptoms as effectively as possible –we’ve tried every medicine anyone ever heard of that supposedly was prophylactic for migraines or reduced their frequency or severity, including some that were purely WAGs, some of them multiple times over the years.
So on one side I had this brilliant, thoughtful (in both meanings of the word), physician who specializes in migraines and spent decades trying to deal with mine. On the other there’s the pain ‘specialist’ who may not even really believe migraines even exist, but by golly he was able to pinpoint in moments the truth about mine: they’re not intractable, they’re not being treated appropriately, and they’re not really even that bad.
As galling as it is to have this cretin make this snap judgement –and it was very judgmental– about these nightmares that I’ve had to deal with my entire adult life, what really burns my buns is the fact that the jerk put down, as the official diagnosis, “migraines, not intractable.”
Now, NC Neuro first suggested I consider applying for disability in about 1989. I was missing six to twelve days of work per month. I spent those days huddled in bed in a dark room with ice bags on my head; as an added bonus, some of the time I would spend hours on end vomiting with such violence that I’d end up with black eyes because the pressure caused all the blood vessels around my eyes to burst. It took days to recover, only partly because I always end up severely dehydrated because I can’t even suck on ice cubes when the nausea is bad (yes, I’ve switched tenses; it’s still going on, nearly thirty years later, except there’s some months when I lose more like twenty days a month to indescribable agony).
Anyway, the disability. I was utterly appalled and infuriated when NC Neuro brought it up; I was not a moocher or a sponger, I’m an independent & responsible adult who does not need to be taken care of. The very idea offended me on such a core level that I was rather surprised; I’m not generally judgmental about people who need assistance, it’s just that I wasn’t and would never be one of those people.
Well, the last time I worked, I spent nearly seven out of the last eight weeks of the job in bed, under ice, praying for death. It made for a kick-ass diet, and I probably should’ve been taken to the hospital at least for the dehydration, but I survived. Then I applied for disability. The day I sent in the application I spent most of the time throwing up from the incredible, grinding sense of shame I felt. Friends & my docs told me it wasn’t my fault, that I’d worked for many years around the blinding pain (& sometimes with it; I worked at my lab bench while wearing two pairs of sunglasses because the light was so painful). It was not a confession of weakness to admit that I wasn’t able to work because of the horrible headaches which I’d tried everything to stop –or even reduce.
It sure felt like an admission of weakness & worthlessness.
But along comes this little twerp of a physician who clearly had made up his mind about me before ever laying eyes on me. He saw that I was taking opioids, which are generally not considered the best option for migraines, and passed judgement on me and on my long-term doctor (who agreed to try opioids; he wsn’t a fan of them either, but he knew me, knew my conditions. They helped tremendously and gave me a few more years working). The fact that The Twerp obviously considered me a whiner or faker or whatever pisses me off enough, but it’s far from the first time that’s happened. But the fact that he basically declared that my NC Neurologist is incompetent seriously pisses me off. That poor man worked like a dog (a brilliant dog) for decades to try and help me, and I know I’m a frustrating patient. Not because I disobey directions or am not trying to get better, but because nothing he or I did worked to get me better. I’m firmly convinced that if anyone in the world could’ve come up with a way to do away with the headaches, NC Neuro and I would’ve found it. He’s a brilliant, kind, empathetic physician who treated me like a real human being, moreover like a human with a functional brain (& let me tell you, that’s an incredibly rare way for a physician to treat a patient). And here’s this schmuck dispensing condemnation of me and of NC Neuro; pah!!
Also, I can’t help but worry that The Twerp’s diagnosis –that insidious little “not” that he just had to put in front of “intractable”– will cause trouble with the disability payments. Because the migraines have not gotten much (if any) better since I’ve not been working. It is a relief not to be letting my employer down or feeling guilty &/or overwhelmed about missing work, but that relief hasn’t translated to a decrease in headaches.
We are in such a position of powerlessness to physicians. And many of them revel in being in the power position so much that they lose all compassion and humanity –assuming they had any to begin with. I spent most of my working years as a medical research technician, the person who does the laboratory work. After my first position I advanced to a point of being substantially responsible for designing the research plan; my PI (Principal Investigator) would tell me the kind of information they wanted to figure out, I’d go determine which procedures would best to get it. I worked for years at a lab attached to a teaching hospital, so I had the dubious honor of training newly minted MDs in laboratory techniques. Out of the dozens I trained in the lab, I recall only two who were willing to admit that a mere female, one with only many, many post-graduate courses (but not a Master’s –I was ABT– or Doctorate), could possibly have anything to teach them. These were people who didn’t know a beaker from a bean, but by God, they knew it all anyway.
MD arrogance is a stereotype for a reason; many MDs are arrogant. They firmly believe they are infallible, know everything there is to know, and can evaluate a patient’s mental, physical, and substance abuse status in one micro-second glance. After that, the patient is pigeonholed forever. I have contracted weird and rare health conditions throughout my life; rare indeed is the physician who will spend an instant listening to me say explain them. They are taught in Med School that “when you hear hoofbeats, think horses, not zebras.” In other words, a common condition that seems to fit presented symptoms is the more likely diagnosis. But here’s the thing: zebras do actually exist. Finding a physician who believes in zebras has gotten orders of magnitude more difficult over the last 2-3 decades.
Then there are physicians like The Twerp above, who refuse to even believe that horses exist. That patients are liars. Whiners. Fakers. Subhuman. Deserving not only not being listened to, but not even being treated politely. No, not all physicians are this appallingly narrow minded and bigoted, but given the current insane hysteria gripping the country, more and more are falling into snap judgement –even before attempting a diagnosis, if they even bother with that.
The Twerp could still come back to bite me metaphorically on the ass; I never went back to him, but that “not intractable” determination, based upon absolutely nothing other than his own arrogant prejudice, still lurks in my records somewhere. There is nothing I can do if it rears up, sea monster-like, to destroy my life. This is not hyperbole. We are even more prisoners of medicine than ever, even if we don’t get kidnapped and locked in a hospital like some have been. These doctors hold not only our physical lives in their arrogant, bigoted hands, but our very existence. Lab rats have greater protection against abuse.