A Supposedly Healthy Thing That I’ll Never, I Mean Frequently, Do Again
A stuffy old man who was supposed to help me was offended and distracted by my apparent lack of manners.
A few years ago, I went to a doctor’s appointment. Actually, I went to many appointments that year. And at the end of this roughly hour-long appointment, my doctor asked me why I was yawning.
The doctor had the sort of cold, gruff bedside manner you hope means he’s actually brilliant and will solve all your problems and ailments and find the missing diagnosis or lab test that will pull all these winding threads together. Sadly my life isn’t some formulaic medical tv show, and his brusque treatment of me didn’t mean he was an arrogant genius; he was just arrogant.
I got the appointment after hearing he was highly recommended by a friend of a family member. Apparently he had been excellent in handling this guy’s endocrine operation — was it a tumor maybe? It’s been years — which was the sort of serious, acute, clearly identifiable incident that our medical system generally handles rather well. I, of course, came to him with the opposite situation: years, at that point, of chronic, unexplained symptoms, exacerbated by a recent ill-advised stint interning in New York. He was an endocrinologist, and I was exhausted.
It is a common experience in chronic illness land (not as fun as it sounds!) to see many doctors, and for many reasons. It takes months and possibly years (what ends up feeling like a lifetime) of going to appointments just to get the diagnosis. Any illusion of post-diagnostic clarity is lost when you realize your diagnosis isn’t as simple as you’d hoped. The disease etiology is more or less unknown, there is no large body of research or understanding of its pathology, no biomarkers, no 5K race for the cure, no clever hashtags or wristbands to join you together in a community of commiseration. And with that, no clear treatment plan.
So you keep going to appointments with doctors. Now that you have the diagnosis, you can see specialists and get referrals for more appointments, wear more uncomfortable hospital gowns and come in with your lengthy list of symptoms in case that weird thing that happens with bright lights at night is a sign of something else. And maybe this other new symptom is a sign of a different, better diagnosis. And you keep hoping, while shivering in the bland medical office building, because doctor’s offices are always cold, except for the alternative healing centers that you sometimes get advised to go to, which have crystals in the corners of the rooms and weird wallpaper and vaguely inspiring wall art.
At every appointment, the doctor will ask for more lab orders, because the gallons of blood you’ve in effect donated to unofficial personal medical research isn’t enough already, and you start shaving that patch of hair by your elbow where the phlebotomist puts the tape that holds the chunk of gauze absorbing the blood from the vein that was poked and prodded for an unnecessarily long amount of time.
The results come in, and so you go back for more appointments, and maybe some of the symptoms have changed by now, but the big ones — the ones that drove you to the doctor and the brink of a breakdown — are still there. Some of these doctors look at your symptoms and think that though your diagnosis is X, you might actually have Y, or even Z, or some combination thereof, which might be a real disease and also might be completely speculative. So the new doctor puts you on a heavy dose of doxycycline and another antibiotic you can’t remember, but it’s ok because she’s momentarily giving you hope since at least there’s a treatment for Y. We search for our keys under the light, and so apparently we diagnose what we can treat. Which is great, until you’re helping with that college global health nonprofit event on a Saturday morning, and then sprint to the restroom and start dry heaving because the antibiotics are that good at killing everything, and you start to wonder if they’re killing you, too.
Which brings me back to that appointment, that freezing cold room with the supposed genius doctor who supposedly listened to me detail my medical history for an hour, including what I thought was a pretty comprehensive account of my severe fatigue, who then told me, “You keep yawning. Why are you yawning so much?” And not in the manner of a curious, concerned physician, but like a stuffy old man offended by my apparent lack of manners. After a lab result a week later confirmed that I did not have a pituitary adenoma, he was out of suggestions and I was tossed back out on my own, off to go through this whole process again with someone else.
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Previously on No End In Sight —Wait, Does Your Body Do This?