8 Lessons Learned by a Doctor Turned Patient
I am a doctor, mother, and wife. I’m also a patient with a potentially severe chronic disease. Eight years ago, after developing unusual dizziness and vision changes, I was diagnosed with multiple sclerosis (MS). MS is an autoimmune disease that damages nerve cells, often leading to progressive physical and cognitive disability. At the time of my diagnosis, my younger daughter had just turned two years old. I was 36.
I, like many people with a chronic illness, never expected to get sick. As a family doctor, I went out of my way to maintain good health habits. I wanted to be a role model to others, and I thought I should follow my own advice about how to lead a healthy life, which I repeated countless times every week to my patients. My diagnosis was a shock, leaving me with an uncertain future and a lot of questions.
For months after my diagnosis, I grappled with many of the usual “Why me?” questions facing many people with chronic or serious illnesses. I started to think of ways that I needed to adjust future plans and scale back on my dreams.
But in the years since, I’ve learned to live with MS. Although I still resent it, I’ve realized I can use my diagnosis as a launchpad for new projects and experiences, such as writing a memoir and even running a marathon. I want to share my lessons learned so that others may benefit from the insights I gained when I was transformed from doctor to patient.
1. Don’t go without health insurance.
As a doctor, I cared for uninsured patients for years, and I saw their struggles to pay for a new prescription or an emergency room bill after an accident. As a patient, I realized that having health insurance is critical to my own health care, allowing me to get routine MRI exams, lab tests, and the expensive medications required to properly treat MS. Insurance is there precisely to assist when unexpected events occur. It’s expensive, with confusing and frustrating rules and limitations, but it’s worth the hassle and cost.
2. Beware of the internet.
My first inclination, after my own diagnosis, was to race to my computer and read everything on MS. As a doctor, the internet is a critical tool, allowing me to stay up to date on medical advances and craft treatment plans for my patients. As a patient, however, the information — especially in the first weeks after my diagnosis — was overwhelming and discouraging. I realized that I needed time to process the news of my diagnosis without information overload. Once I was ready to start learning more about MS, I made sure to use reputable websites, discuss questions and management strategies I discovered with my doctor, and limit my time doing research. I don’t want to think about my disease all the time. I want to live my life!
3. Find a doctor you can trust.
I realized quickly that my MS doctor, a well-respected neurologist, would always know more about MS than me, even though I am a fellow physician. Over the years, he has been a trustworthy guide through my illness. If you are looking for a doctor, ask friends, family, and/or neighbors for recommendations. Websites like CareDash can help you find a doctor, too! If you already have a primary care doctor and need to see a specialist, ask your doctor who they would go see in your situation. You want someone who is smart and competent, but also someone with a good bedside manner who communicates clearly.
4. Be your own advocate.
Even when you find the right doctor, self-advocacy is critical. Don’t expect your doctor to remind you when a test is due. Don’t expect your medical records to get seamlessly passed between doctors. Don’t expect your insurance company to automatically approve all the tests and prescriptions you need. Our healthcare system is badly flawed. I have had expired prescriptions interfere with the delivery of my medications, lab results get lost, and medical records take weeks to move between physician offices that are separated by a few blocks. Read your insurance bills carefully, make sure you understand your benefits, and ask for copies of test results from your doctor or get them mailed to you. Set reminders on your phone if you need to have repeat testing done or medications delivered.
5. Be prepared for your visits.
I want to make the most out of every encounter with my doctor, particularly the first visit to a new doctor. To do so, I make sure to get pre-visit testing done (I usually need labs and an MRI). I keep a list of questions on my phone, writing them down as I think of them in the months between visits. I also keep a journal to track my symptoms and jot down notes during my doctor visits.
6. Build a support circle.
A lot of people struggle to ask for help. We want to be self-sufficient, and sometimes we go to great lengths to hide vulnerability. However, I’ve learned that having a support circle can dramatically improve quality of life and management of a chronic disease. Reach out to friends, families, neighbors, your place of worship, and/or community groups if you need help with meals, transportation, or childcare, or if you just need a friendly visit from someone who cares. Know when to reciprocate, too. Become part of the support circle for others. Even if you can’t leave your house, you can call to check on a friend who may be going through a hard time.
7. Let your chronic disease be a reason to lead a healthy life.
I once saw a patient with Type 1 diabetes, the kind usually diagnosed in children, which requires lifetime insulin therapy. When I remarked that growing up with diabetes must have been challenging, he replied that it had helped him take better care of himself. Similarly, MS has become a good reason for me to prioritize self-care: a healthy diet, daily exercise, meditation, and a good night's sleep.
8. Develop a regular gratitude practice.
Even on my worst days, when I am tired and dizzy and grumpy, I can think of a long list of reasons to be grateful. Writing, reciting, and/or sharing gratitudes help us feel better and may even improve our health. My husband, kids, and I routinely take a few minutes to share what we appreciate about each other, too. It’s a great exercise to help us feel more connected and grateful.
I am fortunate to be healthy, mobile, and active eight years after my diagnosis. I work full-time, and I exercise every day. Although MS is unpredictable and often beyond my control, I want to do everything I can to take care of myself and my family. I hope that in some ways, being a patient has even made me a better doctor.
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About the Author
Lisa Doggett, MD, MPH, FAAFP, is a board-certified family physician in Austin, Texas, with 15 years of experience, primarily in community clinic settings. She currently serves as the Texas Medical Director for AxisPoint Health, a national care management company. Prior to her current work, Dr. Doggett provided patient care at different community clinics, including People's Community Clinic, the UT Family Wellness Center, and El Buen Samaritano. She now sees patients as a regular volunteer at the C.D. Doyle Clinic, for individuals who are homeless and others, in downtown Austin. She recently completed a memoir about her own experience as a patient with multiple sclerosis and is seeking publication. For more information, visit her website at Lisadoggett.com.
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