The 5 Stages of 'Doctor Disenchantment' When You're Chronically Ill

You’ve been told all your life that when you need medical advice you shouldn’t Google it or depend on outside research–you should go see a medical professional.

You live in a world where it’s assumed that doctors know what they’re talking about. If they say “it’s nothing,” then it’s nothing. If they say to take a medication, you take that medication.

That’s before the incident.

Something changed, something happened, and suddenly your life turns upside down. There are inexplicable symptoms, and you can’t think of any possible solutions. But you’re confident that your doctor will know what to do. Enter stage one.

Stage 1: Trust and Confusion.
The doctor’s visit is relatively normal. The doctor recommends a few basic blood tests, but says it’s likely a psychosomatic issue. You leave, still confident, but a bit confused about the lack of concern. Oh well, you shake it off.

Stage 2: It’s Psychosomatic.
You return to the doctor only to find that the basic tests came back normal. You expect them to call on their years of medical schooling and problem solve. Instead, they say, “All your tests are fine. So it’s definitely psychosomatic.” They write you a prescription for some anti-anxiety medications and tells you to give an update in several months. You leave even more confused–you know the doctor is wrong, but you have no idea why. And they shouldn’t be wrong — right? They went to medical school. You didn’t. They’re the expert. You’re not.

Stage 3: Becoming Your Own Researcher.
You begin to feel worse and worse. It’s clearly not in your head, so you begin to do your own research. You know you’re not an expert, but at least now you can bring your research back to your doctor, who’ll know what to do with it. To your shock, you find all kinds of research and so many others like you! You find alternative medicine, Western medicine, and everything in between. Feeling confident and validated that your illness is real, you set another doctor’s appointment.

Stage 4: The Difficult Realization.
You enter your appointment, research in hand, and tell your doctor you’ve been getting worse, but you have a lot of ideas about where to start. They give you a condescending smile and perhaps even laugh a bit. You feel a bit embarrassed, but keep going. You ask for specific tests and maybe a referral in a timid voice. They smile again and tell you that you don’t need the tests. Maybe your doctor even tells you not to put any stock in this research. You feel like a fool, so you leave with your tail between your legs. Only afterward do you realize that they immediately chose to shoot down your ideas without adding any of their own.

Stage 5: The Patient Becomes the Expert.
The research you’re finding has been published within the past few years, but your doctor went to medical school 15 years ago. At this point, you realize they don’t actually know anything about this. They didn’t learn this in school; there’s no way it would have been possible. But worse, they don’t intend to research or learn anything new now. So now, you need to advocate for yourself. Your doctor isn’t going to do it.

They’re not the infallible expert that everyone seems to assume–they’re just a person. You set another appointment, and again, there is no negotiating. You demand to have another panel of tests done. Finally, they sigh and agree. Your doctor is no longer an expert for you to come to, they’re just a means to an end. You’re the expert and the advocate now.

Doctor Disenchanted
Welcome to the other side, where questioning your doctor’s opinion is second nature and you make appointments simply as a means to an end. You use your doctor to get referrals and tests you need, whether they think so or not.

Now you don’t trust someone simply because they have a medical degree. You trust results and intelligence.

You trust a willingness to learn versus overconfidence in a degree.

Welcome to being the expert. Welcome to chronic illness health care.