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What Doctors Don't Know Can Hurt Me

There’s an old saying: “What they don’t know can’t hurt them.” True as that may be in some situations, what they — “they” being the doctors I see — don’t know can hurt me. It does, too. Oh, it does.

My new specialist had ordered enough labs to require 11 vials of blood. I had the results in front of me: about 17 abnormalities had been found. Some of the numbers were only slightly off — a 57 where the top of the reference range was 50 — while others were through the roof; 1,500 when the maximum normal value was 400.

I already had quite a few diagnoses, and this condition was perhaps the last, large piece of the puzzle. My primary care doctor had needed to prod me to see a specialist about it; it hadn’t been my idea. I had a diagnosis; it was already being handled. “Even if there’s nothing they can do,” she’d reasoned with me, “information is good. Right?” I had to agree with her, even though I was loath to add another specialist to a starting lineup that already included nine medical providers. She’d never steered me wrong, and the pages of abnormal bloodwork, which matched features of my clinical history going back to childhood, had proven that. It seemed that I’d perhaps progressed to something more serious than my original diagnosis had indicated.

I thought it would be hard to argue with the labs. Those weren’t subjective symptoms; they were cold, hard numbers. There wasn’t just one abnormal test result; they were legion. They pointed directly toward a specific diagnosis. The doctor had ordered those labs; he had to respect them… right?

I was, of course, very, very wrong. The doctor made short work of every single result. He skimmed through them, missing about half of the pages and the abnormal values they contained. This one was only slightly off, he said. This one was a lot off, but it didn’t mean anything. This one wasn’t serious enough. I found myself wondering what he thought the reference ranges were there for, or why he’d ordered the labs at all if he intended to dismiss them out of hand.

Within a few seconds he was casting aspersions on my medical history. I discovered why: He told me point-blank that his diagnosis (or lack thereof) was based on whether he felt I met insurance criteria for expensive treatment. In other words, what I heard was that if he didn’t think he could get paid for treatment, he wasn’t diagnosing me. And then he played the Invisible Illness Theme Song: But you don’t look sick. You’re not sick enough. Pay no attention to the clinical signs and symptoms, these lab numbers, or the fact that people with these conditions actually present with varying levels of illness and disability.

The more knowledgeable I was, the more he bristled. By the time I asked him why he thought it was acceptable that some of my counts were several times higher than they should have been, he was visibly annoyed. When I picked up my binder of records to refute what he was saying about my medical history, he actually refused to look at the files. I had an unpleasant and all too familiar feeling in the pit of my stomach: the grim realization that I was completely wasting my time. There was another cold awareness: this doctor was going to receive hundreds of dollars from my HMO for this consult despite doing absolutely nothing to help me and giving me harmful and completely incorrect information about my condition.

I walked away from the exam room with a patronizing printout on how to use my asthma meds. I’d had asthma since I was 15, and I certainly didn’t need to be told how to use an inhaler. The front desk made a follow-up appointment for me; I politely asked them to cancel it and declined to reschedule. I couldn’t stand up for myself in the exam room, but I could, and did, fire the specialist at once.

On the ride home on paratransit, I made some phone calls to contacts that might be able to help, sent an email to my PCP to describe the situation and ask for a referral to another specialist, and mentally kicked myself again and again. Why hadn’t I defended myself more? Was it a lack of self-confidence? Was I freezing like the proverbial deer in the headlights? Did I subconsciously have a desire not to be labeled a “difficult” or “argumentative” patient — something that could follow me to another physician and make it even more difficult to receive care?

It wasn’t as if I wasn’t assertive in other settings. I was able to politely and firmly advocate for myself with more receptive doctors. When relatives were hospitalized I actively stood up for them. I did my homework about my illnesses and had good working relationships with my team of specialists. I’d been able to wage all-out battles to get things covered with my HMO and obtain medical records from doctors who didn’t want to cough them up.

The difference: positive outcomes were possible in those situations. This one had been a lost cause, I’d known it, and I’d shut down. I hadn’t bothered wasting my spoons because I’d known it wouldn’t make a lick of difference. Some doctors have my best interests in mind. Some do not. This specialist had been one of the latter, and I had been way too tired and ill to fight with him. And sometimes I’d simply been speechless; I couldn’t fathom the nonsense that was coming out of the doctor’s mouth, much less respond to it.

What this doctor didn’t know — both in terms of his lack of clinical knowledge and lack of respect for his patients — has hurt me. For me, being blown off in a medical appointment translates to more wasted time. More wasted money. More pain. More stress. More cynicism. More days without appropriate treatment. More paperwork for my busy primary care provider, since she’ll have to write me a new referral. The problems causing those abnormal lab results aren’t going away simply because a hard-headed specialist refuses to acknowledge them. If my condition worsens or a lack of treatment results in dire consequences for me, that doctor won’t know or care. He’ll collect his fee from my insurance and probably won’t even remember my name next week.

I haven’t mentioned the actual illness being debated by the doctor. That’s because it doesn’t matter; chronic illness patients walk through this minefield all the time with all sorts of conditions. You’ll find story after story about people with complex chronic illnesses who were forced to get second, third, fourth, fifth and sixth opinions before they found a physician who knew how to diagnose and treat them. And they’ve had to repeat the process with every single one of their illnesses. Patients experience gaslighting and have their conditions minimized or completely dismissed. And if they’re not happy with it, they generally have one option: finding a new doctor. They’re derisively called “doctor shoppers,” but nothing’s ever said about the provider incompetence and indifference that fuel those shopping expeditions.

It shouldn’t be this way. No, there’s never going to be a way to entirely eliminate unprofessional doctors. There are bad apples in every single profession, but we shouldn’t have to worry about this every single time we step into an exam room. We shouldn’t be sent to specialists who have no damn idea how to deal with, much less diagnose, anything remotely uncommon. Patients should be able to walk away from encounters with medical professionals feeling that they’ve received the best care possible. Doctors and patients don’t have to be friends; they don’t have to agree; they don’t even have to like each other. However, patients should be able to trust that their doctors will treat them compassionately, knowledgeably and appropriately. If they’re not happy, they need an avenue to explain that to someone who’s actually listening and has the ability to effect change.

Many medical professionals have scoffed at patient satisfaction scores in hospitals, claiming that they measure the wrong things and make it harder to do their jobs. However, maybe they’re one of the keys to turning the tide. Unprofessional, ignorant doctors make it harder for everyone — including the good providers who have to pick up the pieces for these untreated, undiagnosed patients later. It’s up to the healthcare industry itself to start addressing this more fully, to exercise better quality control, and to ensure that what doctors don’t know does not continue to hurt us.

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