135Journals Manifesto: Why saying “Maybe your doctors just don’t know what to do” is not acceptable

20 Sep
Pain is blue. Alexandra Hanson-Harding

Pain is blue. Alexandra Hanson-Harding

I have a problem.

Scratch that.

I have a crisis.

My crisis is: I can barely walk. Since the last time I posted, my health has gone into a downward spiral of pain, dizziness, numbness in the legs, ringing in the ears, foot drop and other weird neurological symptoms, and now, I can hardly walk. I need a cane, and even then, I can barely get from the front door of the building to the doctor’s office without excruciating spinal pain.
This is not good. And I am frustrated. And I am scared. Because this happened very suddenly, and the reason for at least part of it is not clear. And also, it took me a lot of work to get any attention from my doctors, even though I probably have much better medical care than most people. I live in the New York area and I have excellent insurance. I can go to any hospital or any doctor I want to. I am not shy about asking for anything I want or think I should have. Even so, I get brushed off. And I don’t like it. Because it is unjust.

I get it. Doctors don’t know everything. Everything isn’t their specialty. Sometimes they just don’t know the answer. Health care is fragmented in this country. It’s a broken system. Doctors are stressed out. Under pressure. They can’t do everything. They have needs, too. They’re only human.

Yeah. I hear that. I register that. Doctors, you are human. You have to eat your dinner and play with your kids. You have to see lots of patients today, not just me. I have to wait my turn. You can’t do everything. Sometimes you don’t know the answer. Sometimes there isn’t an answer to every question. Sometimes the system just isn’t accommodating. Shrug.

But here’s what I also know. I also know that doctors can pick up the phone and ask other doctors. I know that doctors can ask medical librarians to do research. They can do their own damn research. They can ask their patients more probing questions about their symptoms. It’s not actually true that once doctors go to medical school, their brains are full and they are done. I know that advances in medical science are not frozen in time the moment that they graduate. Generally speaking, when smart people are hired to do a job, generally they aren’t just hired to regurgitate knowledge they already have. They are hired to figure things out. That’s what doctors are supposed to do, too. Figure it out.

I know that when I do MY work, I do it with curiosity and energy. If I encounter something confusing or challenging, I find it not annoying, but interesting. I figure that that is why I got into the business I got into. Because I wanted to learn. I know that human beings are capable of learning new things. I also know that if you are a doctor, if you have a patient who has some unusual presentation of a disease, and you do some sleuthing and learn something new, you might learn something that you could use to help another patient. It isn’t just a waste of your time. It’s valuable. The idea that a doctor—someone who is supposed to be smart—would not find a challenging medical case interesting—actually seems faintly disgusting to me. Scratch faintly.

At long last I am finally getting more serious attention. Which is good, because aside from the fact that it is scary it is also very saddening to feel as if the people who are supposed to be the experts, who are supposed to help you, aren’t taking you seriously when you are spiraling downward in such a serious way. I was just looking at a page in my journal. “How F-ing crippled do I have to get before someone helps me?” I wrote, rudely. But honestly, if one ever gets to use the F word, doesn’t barely being able to F-ing walk apply?

I F-ing think so, and if you don’t agree, I have a cane with which I can beat you up.

Which brings me to the final point. From my point of view, there is an urgency to get attention brought to my problems before they go further downward. If I can’t grab at someone’s white coat and get his or her attention now, while I can still be rational, what will happen if I am reduced to even more helplessness? I was just getting to the point of fearing they would listen to me even less.

I shouldn’t say “They” because each doctor has done good things as well. Each doctor has done generous things, each one has caught something useful.

But this experience has reminded me once again that as a human being, I can be respectful of doctors and other patients, but I don’t always have to put my doctor’s feelings first, or wait my turn, or respect that the doctor just may want to wring his or her hands and give up. If I have a serious problem, I think I have a right to expect my doctor to step up to the plate and try hard to solve it. Not only will I benefit—as I deserve to— but so will my doctor. And so will his or her other future patients to come.

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