Like most doctors, I am an overachiever and I have always been a “good” student. Throughout my education, I perfected the art of making my teachers happy. I made it through prep school, college at Stanford University and Harvard Medical School with high honors. I am used to doing what’s expected of me, and doing it well. I thrive on the rewards associated with such behavior.
But now, as a patient with Multiple Sclerosis, I find myself in an unfamiliar role. I am deliberately choosing to ignore my doctors advice. He wants me to be on medication, but I quit a month ago. While I trust that I am doing the right thing, I can’t help but feel that I am a “bad” patient, a disappointment. Undoubtedly, part of this is due to my neurotic, overachiever tendencies. My doctor has not reprimanded me. He has simply made his opinion clear, as he should. Still, I sense a subtle disapproval and I feel misunderstood and boxed in, like he doesn’t really see the whole me.
Because I sit on both sides — as doctor and patient — I am especially interested in exploring these feelings. Why do I feel like a disappointment? Is there such a thing as a “bad” patient? When should we listen to our doctors, and when should we not? As patients, are we free to disagree?
As a physician, I would like to say that doctors do not classify patients as “good” or “bad”, but I can’t. Consciously and unconsciously, and of course in varying degrees, we do. To be honest, my job is easiest when a patient accepts the diagnosis I provide, understands my explanation of the disease process and the pros and cons of various treatment options and ultimately follows my recommendations. It is particularly satisfying when patients do what I say, get better and then express gratitude. A neat and tidy package, wrapped up and sealed. A sense of mastery.
Patients who don’t follow my recommendations, on the other hand, can be frustrating. I am trying to help, but I can’t, or at least I think I can’t. In medicine, we label such patients “non-compliant,” a term fraught with negativity. For a while, there was a movement to use “non-adherent” instead of “non-compliant” as a less paternalistic and derogatory term. Except in scholarly writing, it seems this term didn’t stick. I still hear “non-compliant” all the time from my physician colleagues, and in truth, I am not sure “non-adherent” would have been much better. Doctors judge.
Moreover, doctors like clarity. We prefer to do something instead of nothing, and this often means prescribing medications. For the most part, patients encourage this behavior. No one likes to leave the doctor’s office empty handed. The misuse of antibiotics to treat respiratory viruses illustrates this point, but that is another story. Patients want answers and clear cut solutions and doctors want to provide them. To admit how much we don’t know — how much is out of our control — is frightening for all involved.
Living with Multiple Sclerosis, I have been forced to confront this ambiguity. So much about this disease is unknown and unpredictable, and the variability between patients is extreme. Today, I am totally fine. I have the Relapsing and Remitting form of the disease. My relapses are rare and minimal in terms of symptoms. I have no trouble keeping up with my four kids. I hike, run, play lacrosse and ice hockey and maintain a busy personal and professional life. I have been very lucky. But it is certainly possible that I won’t stay this way, that I will move into the Secondary Progressive phase of illness and face immobility, incontinence, visual problems, or even cognitive impairment. Certainly, my 11 years of relatively inactive disease bode well, but ultimately there is no way to predict what is to come. There is no cure, only disease management. Nothing about this disease is clear cut.
In my experience, current medical thinking does not reflect the diversity of this illness. Since my diagnosis in 2001, I have had three different neurologists, all highly regarded physicians in prestigious Boston hospitals, and all fairly uniform in their approach. The clear bias among my doctors has been to use disease modifying medications early and aggressively, despite the fact that my symptoms have been very mild. None of them have talked to me about other ways to manage my disease — diet, exercise, stress reduction, acupuncture, massage. None of them has ever said that taking no medication is an option, that I might be totally fine without pharmaceuticals; that none of us really know or that my feelings are important. The message has been clear: Taking medications is the right thing to do, the only responsible path.
I am not opposed to taking medications. When I have a cold, I am quick to pop the highest possible dose of whatever over-the-counter remedy I can get my hands on. If it makes me feel better, bring it on! With MS drugs, though, I am less convinced. These are powerful medications which target the immune system so as to disrupt the autoimmune attack of the disease. The potential benefits are significant, but so are the potential side effects. And the potential benefits are hard to measure because of the unpredictability of this disease, especially in my case, because right now I feel great.
I admit that my approach to my illness has been somewhat irrational. Despite my science background, I have an aversion to reading the research papers on the topic. While I am open to hearing a summary of the drug efficacy data from my physician, I have no desire to dissect the minutiae of each study. Statistics aren’t helpful to me. Instead, I have been guided by a deeper, emotional, intuitive force that is hard for my doctors, and many other people, to understand.
In 2001, when I first developed numbness and tingling in my legs and was found to have one demyelinating plaque on my brain MRI, my neurologist was quick to diagnose me with “probable MS” and to recommend that I start disease modifying therapy immediately.
What I wanted from my doctor — but didn’t get — is for him to see that I was a medical resident with a two-year-old child and going through a divorce. That I yearned for more children. That I wasn’t ready to accept a chronic illness into my life. I wanted him to consider the context of my life, but he didn’t. I left his office (practically ran) and didn’t return for five years. My symptoms resolved and I put the possibility of MS out of my mind. Life went on. I met my current husband. I had two more children and gained a step-daughter. I finished residency. Denial, I suppose, but this is where I needed to be.
Five years later, in 2006, I returned to the doctor after a recurrence of symptoms and finally accepted that I have Multiple Sclerosis. I have been on three different disease modifying therapies since in an effort to follow my doctor’s recommendations, despite my continued ambivalence. I have stopped all of them, either because of side effects or because they were no longer “working” (based on changes on my MRI, not on my symptoms, which have been essentially stable over time). My last attempt was in June, with a medication I have always been reluctant to try because it can cause “flu-like” symptoms, and depression. I did the once weekly injections for three weeks, and side effects were as advertised: headaches, body aches, and exhaustion. I was spending two days out of each week feeling miserable, while before I had felt well.
The night after my third dose, I lay in bed with a heating pad on my low back and a rioting headache, unable to sleep. I dragged myself through the next day, crying easily and snapping at my kids when they didn’t deserve it, just wanting the time to pass so I could get to my bed again and hopefully sleep. I found myself wondering if this was really worth it, if my doctor understood what this was costing me, but I remembered him telling me that the side effects should ease up over time, hopefully, and I re-committed myself to following his advice. A few days later, when I felt well again, I changed my mind. I was sitting on a cushion of moss on a river bank in New Hampshire, watching my five and seven year old skip rocks into the water below, listening to their laughter against the back drop of the flowing water, feeling the warm sun on my back. It was a perfect early July day, and one of those moments when time seems to stand still, and everything comes into sharp focus. For uncertain benefit, I am unwilling to give away time. I decided to quit and join the ranks of the “non-compliant”.
A week after I took my last dose, an article in The New York Times reviewed the results of a newly published study on the efficacy of this very drug. While the medication was shown to decrease the rate of relapses, it had “little or no effect on a patient’s progression to disability.” As someone with only minimal symptoms, I read this as a validation of my decision to quit. If I am feeling well, why lose two days out of each week if the medication won’t even help ward off disability? I felt triumphant, with both science and intuition on my side. Still, it took me weeks to tell my neurologist that I was no longer taking the medication.
I understand that for some people with MS the potential positives of these medications outweigh the potential negatives. I understand that at some point in future this may be true for me. This is a constantly shifting calculus, and tomorrow will be different from today. But today, I want to be medication free.
My doctor tells me that there is about a 50% chance that I will move into the Secondary Progressive phase of illness and develop significant disability in future. In this, I hear good news. “Phew,” I think. “I will be fine.” A splash of denial, perhaps, or maybe just optimism. A gut feeling that I want to honor, for now.
Being on the patient side has changed me as a doctor. Now, I see more clearly that no medical decision is simple. While my job is to make recommendations to patients based on my medical knowledge, there is no one answer. Ultimately, what is “right” is based on a multitude of factors. Living with illness is a dynamic process, and we need to make room for different, and perhaps constantly shifting, approaches. “You are in charge”, I tell my patients.