Lessons Learned as a Doctor Turned Patient
As a family doctor and self-proclaimed health nut, I thought I’d never get sick. Although I saw patients every day with unexpected illness, with the right combination of a vegetarian diet + obsessive hand-washing + exercise + adequate sleep, I thought I would live to be 100. I knew the secret ingredients, the formula, for avoiding chronic disease.
And then, nine years ago, I woke up dizzy. I thought I was getting a cold that would pass in a few days. But instead of a sore throat and cough, I developed double vision and taste changes.
My MRI showed white spots; my spinal tap showed oligoclonal bands. I had MS.
Suddenly, I was no longer the physician, but the patient. I was the anxious woman sitting in waiting rooms, arguing with insurance companies, struggling to understand my doctor’s instructions through a foggy, MS-induced haze. The tables were turned, and I hated it. MS, it seemed, was a thief; it had stolen my future, my certainty of health. I was angry. I still am angry.
But I now realize that MS is also a teacher. At first a reluctant student, I can now acknowledge that MS has taught me how to live with uncertainty. I have gained a new perspective, and I hope I am a better doctor as a result. Despite continued resentment towards MS, I am grateful for its lessons:
- Prioritize self-care. Leading a healthy lifestyle has always been important to me as a doctor. I want to set a good example for my patients with my health habits and choices. But since receiving my life sentence with MS, self-care has become imperative. Exercise and meditation now are as entrenched in my day as eating breakfast and brushing my teeth. A plant-based diet remains a cornerstone of my self-care.
- Beware of information-overload. As a doctor, I rely on the world-wide web every day to keep up with the medical literature, check medication doses and read up on new treatments. But as a patient, I am wary. MS is a bizarre disease, and the online advice – though often well-meaning – can be overwhelming and sometimes downright dangerous. I’ve learned to limit my research time, and I know where to go for reliable information (hint: The National MS Society tops my list of dependable websites).
- Build, nurture and embrace your support circle. MS has taught me to be vulnerable—to ask for help. At the time of my diagnosis, my daughters were 2 and 4. I was working as the director of a new clinic for people without health insurance. My life was chaotic without having a chronic disease. MS wasn’t exactly convenient. Fortunately, my friends and family stepped up, bringing meals, keeping my kids, coming with me to appointments. Over the years, I’ve made sure to reciprocate, and I know who to call when I have another relapse.
- Advocate for yourself. Even as a physician, I am regularly baffled and infuriated by the challenges of managing my own care: making sure my medications are delivered on time, that prior authorizations are completed for MRIs. I have had to switch doctors when one pushed for unnecessary tests and failed to communicate abnormal lab results. I wish our healthcare system was efficient and patient-friendly. It’s not! To overcome its deficiencies and ensure I get the best care possible, I keep a calendar to track my symptoms and appointments. I found a knowledgeable and trustworthy neurologist. I ask lots of questions, and I speak up when I need clarification or disagree with a recommendation.
- Don’t let MS keep you from following your dreams. For months after I received my diagnosis, I was afraid to set new goals. But I’ve learned to focus on my abilities, not my limitations. Goals give our lives purpose. My bucket list may look a little different than before my diagnosis or a bad relapse, but I keep setting goals and pushing myself to new limits. I have used MS as a launchpad to do more and do it now.
I still feel rage and fear and sadness when I think of my MS diagnosis, relapses and continued symptoms. I worry about the future. I still wonder, “Why me?” and curse fate. But I’ve learned that I am not exempt; I am no more invincible than anyone else. And in my calmer, wiser moments, I am, perhaps, just a little bit thankful.