Patient Blogs | Rheumatoid Arthritis
Notes From a Noncompliant Patient
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I trust science. I am humbled by the amount of study, training, and practice that go into becoming a doctor. When a doctor advises me to do something, I do it. Or at least, that was my attitude going into this whole RA thing. But 12 years on, it turns out to be more complicated than that. Sometimes I’m noncompliant.

I hate the word “compliance” when it comes to medicine. It’s so either/or. Patients are noncompliant when they don’t follow doctors’ orders, don’t take their meds as instructed, etc. Noncompliance invites judgment. Doctors don’t say it right out loud, but I have felt it. We all know when we’re being patronized, or spoken to … delicately.

A noncompliant patient might be contrary, or nutty, or too dumb to know what’s good for her. It’s frustrating for a doctor trying to help a patient who doesn’t follow advice. What’s the point of offering expert advice if it’s disregarded?

I sometimes push back on doctor’s orders not because I’m crazy or stupid, but because I live in this body and I know my own experience. Doctors will not find that experience on their computer screens. There are no data to illustrate it. I’m the sole guardian of that information.

I have had some weird symptoms. I’ve also had unusual and harmful side effects from some medications. Of course I stopped taking them. There’s a risk/benefit calculus with any drug. These carry FDA “black box” warnings. Why would I take a drug that could kill me when it’s making me sicker, not healthier? Color me noncompliant.

I’m not advocating that patients try to be their own doctors. That’s a dangerous game. I’m just saying it doesn’t make sense to defer to an “authority” who is operating on insufficient information. And that describes any doctor who is not listening to and believing their patient, even when that patient tells an unexpected story.

Compliance presumes authority. Like it or not, doctors hold significant authority over patients. They control some big levers. My doctors have sometimes gotten things wrong, to my detriment. I’d be OK with that, if they viewed unexpected outcomes as useful information rather than an inconvenience, or worse – a comment on them. We’re all human, and medicine is hard. In my experience, when something goes wrong, the default has been to doubt me, rather than question the diagnosis or treatment. And then we’re into some complicated territory regarding authority and compliance.

My compliance is not a given. In more than a half-century of living, I have repeatedly seen the curtain drawn back on the hapless wizard behind an ostensible authority. Not just in medicine – in everything. It’s impossible to live in this world, at this moment, and still hold the childish belief that all authority is earned or legitimate. Doctors absolutely have my respect for their hard-won expertise. But respect is not obeisance.

I’m in a tough place with authority right now. Systems meant to ensure justice are fragile, and their failures are devastating. I look at women being denied reproductive rights. I look at Purdue and OxyContin. Police brutality. Cosby and Weinstein. Pedophile priests. Rapist coaches. The list is endless. Abuse of power is baked into the human experience.

I’m furious about that. Enraged. And I’m not sure how to deal with that fury in one small personal context: my own health care. I don’t think the average doctor abuses their authority. Not at all. They’re just people, mostly busting their very capable butts at a really hard job. But they are not immune from the abuses of power intrinsic to the theory and practice of medicine. Greed. Sexism. Racism. It’s a systemic muddle, and it affects us all.

Where does that leave me when it comes to compliance? How can I question medical authority without cutting off my nose to spite my face? I don’t pretend to be a doctor. I don’t know what they know. How can I advocate for myself without pointlessly complicating their efforts?

I don’t have answers. I need doctors’ expertise, and that expertise is only whole when power differential is not a factor. I need expertise offered in the spirit of partnership, not authority. That kind of partnership requires listening, which takes more time than issuing orders. Time is money, and doctors are perpetually short of it.

It’s a Catch-22. I can’t control the shortfalls of our health care system. I can only hew faithfully to my own truth. I can only keep speaking until I’m heard. If that sometimes makes me a noncompliant patient, so be it. Resistance has its place.





Photo Credit: Westend61 via Getty Images

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Gillian Freney

Gillian Freney

Diagnosed since 2010

Gillian Freney is a writer and editor. Her passion for clarity in health communications is both professional and personal. She has written on behalf of public health and human services agencies for many years. She has also lived with rheumatoid arthritis since 2010. Gillian sees firsthand that everyone benefits when patients and doctors share a common understanding. She knows reaching that common understanding is harder than it looks. Gillian lives with her family in Portland, OR.

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