The Chronically Ill Patient’s Guide to Dealing With Doctors

Anyone who’s met my mother knows she has what is often tactfully referred to as a “strong personality.”

When I had knee problems as a kid, and the first orthopedist we went to said something like “eh, if it hurts, she shouldn’t do it,” she took me to another. And another. And another. And when we’d seen all the ones in our local medical group (and gotten a diagnosis that was essentially “you will have shitty knees forever, suck it up”), she took me down to Kerlan-Jobe, one of the foremost orthopedics and sports medicine clinics in the country.

She didn’t give up. She didn’t listen to the doctors who said stupid shit (like that as a girl I shouldn’t be so active anyway), or the ones who had no helpful suggestions (“well, there’s this surgery where we even out your knees by damaging the healthy muscle so it’s as weak as the weak muscle…”). She went for second and third and fourth opinions, until we finally saw a doctor who was knowledgeable and willing to work with us rather than just trying to get us out of the office. (He basically said, “welp, your knees suck. Let’s talk about pain management and how to do the sports you want to do without making them worse.”).

I learned a lot from watching how she dealt with doctors. Let’s talk about the things I learned.

• The most vital piece of information: Doctors are not gods. They are not your boss. They are not in charge. Period. Doctors are consultants you pay to share their expertise and experience with you so that you can make informed decisions about your health. They are service providers. They’re like the President’s Cabinet (this means you are President, btw). This means if they are jerks or stupid or whatever, you can fire them and find someone else. Now, depending on your insurance situation you may be stuck with what you can get, but that doesn’t change the fact that the doctor works for you.
  As an example: I don’t let doctors weigh me (I make an exception for anesthesiologists because I don’t want to wake up during surgery). Any doctor who gives me shit about this will be fired on the spot. So far I’ve had no issue, though.
• You have to be persistent, whether that means seeing doctor after doctor or hassling the one doc your insurance will pay for. Don’t give up until they treat you with respect and help you get better (maybe not well, but at least better!). It can be exhausting, and that sucks. But! In the long run, your odds of getting better are way higher if you can reframe things as a game or a challenge or a marathon and just keep pushing. See the comments to my previous post for a great story about this.
• You are the expert on your own experience. Some doctors will try to gaslight you and convince you that you don’t have symptoms you know you have, or that you do have symptoms you know you don’t. Some will blow you off and say you’re making a big deal of nothing. But it’s not nothing. If you feel sick, you feel sick. They don’t live in your body, you do. You are the expert on your symptoms, not them.
• Do your own research on your condition if it’s a chronic one. I’m not talking about looking at shit on webmd, I mean looking for research papers and studies. Print ’em out and take ’em with you if your doctor isn’t listening to you, or if you find a new treatment that sounds promising, or whatever. If you find a doctor who frequently mentions new research, and who is clearly paying attention, hang onto them! This is an important quality which many doctors lack.
• If you’re in any way active, sports medicine specialists will probably make the best GPs for you. Now, this is just my experience, I haven’t run into anybody else preaching this particular line (unlike most of these other tips, ha!). However: sports medicine is all about the balance between healing up and staying active. In my experience, a regular doctor will tell someone with a chronic illness to give up most of the things they want to keep doing, while a sports medicine one won’t. They might say that to do X you have to do Y, where Y is something really unpleasant (take massively powerful drugs, do 10hrs/wk of physical therapy, whatever), but at least they’ll give you the information and let you make up your mind.
• If you’re seeing doctors that aren’t all in the same network, keep detailed records and bring them with you to every appointment. All my physical-body doctors are in the same network (ob-gyn, GP, etc). They share a single file on me, and can see my history and prescriptions and everything. This kind of thing is useful and important, and when I made an appointment recently to get a second opinion on something, I sent a copy of that file to the new doc so they’d have it too. Information is important, and helps doctors do their jobs better. You can’t remember everything perfectly, so simplify your life and keep notes and records.
• Track your symptoms. I’ve been trying to nail down the cause of some recurring abdominal pain and started marking its severity, location, and occurrence on the “year all on one page” calendar at the back of my planner. It was REALLY useful when I went back to my ob-gyn and basically said “look, the whole “take painkillers and deal”we tried is not cutting it. This is happening all the damn time, SEE?” — and that calendar helped her make a way better diagnosis than the first time I saw her for the issue, when I only had memory and two months of data. Spreadsheets, notebooks, apps, whatever — find a method that works for you and use it, especially if you’re trying to nail down an issue.

So that’s what I do. What other things do y’all do, my readers?