10 Ways to Stay Alive if Your Doctor Wishes You’d Disappear

At some point, your doctor will look at the clock — just when you are feeling desperate. It’s because they don’t have answers. Or because they’re an ass. Despite what any doctor says, there are times when they hope you will disappear. You are probably a woman. If they wish you would go away, you might be a person of color. Your test results might not match up with your symptoms, your diagnosis might not be obvious, and the idea that you might feel completely healthy seems like it is just beyond your grasp.

Decades into a chronic illness, I can tell when a doctor wishes I would go away just by the look in their eyes, the quickness of their questions, or the length and tone of their answers. Advocate for yourself, they say. Be your own champion, they say. As it turns out, advocating is something you have to survive too.

1. Don’t throw a pie in their face when they ask you if you’ve ever thought about self-care.

Maybe, you know, don’t have a pie available. A doctor’s office is not usually a place you want to keep a pie, but just to be safe, don’t tempt yourself. If you have a pie, leave it in the car.

2. Practice the history of your chronic illness in the mirror: try to get it down to a one-minute pitch. Pretend you are selling them on the value of keeping you healthy.

Doctors are working through mental check lists as you talk, and are often limited to 20- or 30-minute appointments. For most of them it takes decades to master the art of treating a complicated patient in that amount of time, so when you start in on the long story that is your complicated body, they get a sinking feeling in their stomach and start avoiding your eyes.

If you can summarize as much as possible up front, giving them the key points and symptoms along with some reminders about your standard test results, then you have a chance.

3. Practice self-care.

I know. But just because they lecture us about it on the regular doesn’t mean it’s not important. It doesn’t have to be yoga. I promise. It could be yoga, but it could also be monster truck driving.

4. Read about your illness online everywhere you can, and stay aware of the symptoms other folks have.

Doctors hate the fact that patients google their symptoms all the time, but it is a fact of our lives that so much information is at our fingertips. Clearly everything you read needs to be fact checked, so be aware of your sources. But online you’ll find folks who have your same symptoms, your same experiences, and your same struggles. You have to know you are not alone.

5. Binge watch television shows.

Get out of your own head.

6. Read every lab report.

For years I struggled with a specific set of symptoms doctors couldn’t, or didn’t explain. Then one day I read the full report from a Cat-scan that mentioned something I hadn’t heard before. I googled it, and discovered that it explained symptoms I’d been trying to understand for years. When I looked back at past tests, this condition had been seen in for years, but never mentioned by a doctor.

7. Ask follow up questions.

See #6.

8. Practice self-care.

I know. But I’m serious about this one.

9. Daydream about pulling a squirt gun out of your pocket when the doctor says things like, “pain in women is very hard to diagnose”.

A lot of things are said in doctor’s offices that are preposterous, dangerous, and hard to hear. You have to figure out how hear those things and not go insane. You also have to learn how to hear them and not internalize them. It’s ok to expect more than this from them, and when you don’t get it, it’s ok to daydream about squirting them in the face with a squirt gun. You have to get through.

10. Live.

Get out of bed, make yourself breakfast, take care of the kids and the plants and the pets. Take care of yourself. Try new things, new kinds of exercise, new shoes. Turn off the news. Sit with yourself. Breathe in and out.

If you are sick — very sick — lots of specialists sick — you need an active plan to get through. That plan is about doctors, nurses, and specialists, but it’s also about you, and what you need to survive. It’s ok to decide what that is for yourself.