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.

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Lisa

Lisa Doggett

Lisa Doggett, MD, MPH is a family physician, writer, and MS Warrior (diagnosed in 2009). She lives with her husband and two daughters in Austin, Texas. Learn more about her and her journey with MS at lisadoggett.com.
 

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    13 Comments

  • Texasobie   Jan 29, 2019 7:34 PM
    Practical tips. I especially like - Exercise and meditation now are as entrenched in my day as eating breakfast and brushing my teeth.
  • Rachel   Jan 29, 2019 7:59 PM
    Beautiful piece!!
  • Lynda  Jan 30, 2019 12:21 AM
    I appreciate your humility and your lessons for all of us!
  • Leta   Jan 30, 2019 8:49 AM
    This is so beautifully and thoughtfully written, Lisa, that it brought me to tears. And the section on advocating for oneself in the medical community is so, so important. Many are afraid to speak up, or simply don't trust themselves, so keep putting this out there! I am so proud of you. You are a true warrior spirit, and sharing your experience and knowledge will have a far greater ripple effect than you could imagine. Of that I am sure.
  • Libby   Jan 30, 2019 9:17 AM
    It is also hard for family members to know how to support a loved one with MS. What help is needed? What is too much? When do you need to talk? When is it just too hard? When someone is as capable as Lisa, you almost forget she has MS-- and then you read something like this and remember how challenging it is every day!
  • Don   Jan 30, 2019 2:40 PM
    Great advice and perspective!
  • Anita   Jan 30, 2019 8:18 PM
    Thank you for sharing this piece of your journey! You are such an example of living in the moment and not letting fear dictate what is possible now.
  • Oscar   Jan 31, 2019 5:30 PM
    Thank you for sharing.
  • Jettie   Feb 6, 2019 2:03 PM
    You are now and always will be the exception brilliant beautiful kind and talented leader and now physician-patient blog-writer hero for so many us without your amazing insights and talents. Thank you so very much for all you do and for the courage to share sparkling truths— I promise to use and share for myself and many others patient and families struggling with challenges and opportunities every day. Thank you, Jettie
  • Rhonda Porro   Feb 9, 2019 2:26 PM
    Dear Doctor Lisa,
    I located your blog today in attempt to find a meaningful way to honor my friend who lived with MS. Sadly, my friend succeeded at her fourth and final attempt at suicide four days ago on January 6th 2019.
    I have another very close friend who also lives with MS. I myself live with Narcolepsy which has many symptoms in common with MS. I am very concerned with the the appropriate diagnosis and critial treatments for the Co-morbid psychiatric conditions that can occur with chronic illnesses such as MS and Narcolepsy.
    The reason I chose to reach out to you particularly is,as you so eloquently stated, you have a unique perspective on MS as a Physician and an individual who personally faces the challenges of MS.
    I am very interested in becoming involved in some meaningful way to help those who live with Chronic conditions such as MS and Narcolepsy.
    I dream of and pray for a cure in my lifetime for both MS and Narcolepsy.

    I would very much appreciate any guidance you may be able to offer me as to any and all possible ways I can exercise my personal “Power of One!’
    To help make a meaningful change in the lives of many who are facing these challenging illnesses every day.
    I look forward to hearing from you.
    Thank you for your time.
    Warm regards,
    Ronnie
  • Avatar
    LisaDoggettMD  Feb 19, 2019 5:57 PM
    I wanted to respond to Ronnie's important comments about MS and narcolepsy, and ways to honor her friend who recently died.

    Ronnie - thanks for reaching out. I am so sad and sorry to hear of your friend's suicide. It sounds like she was experiencing terrible emotional (and quite possibly physical) pain, and it is heartbreaking to hear that she took her own life.

    I'm also sorry to hear of your struggles with narcolepsy, which I know can be a very disabling condition and a major challenge to treat! I hope you have been able to find a good sleep disorders specialist and have found some effective strategies to deal with your condition. Some narcolepsy symptoms do share similarities with symptoms experienced by MS patients, as you mentioned, and they can really impact your quality of life.

    As far as finding ways to honor your friend, I would look to the National MS Society to find events in your area and get involved. There are MS walks all over the country that are looking for walkers as well as volunteers. I am looking forward to riding the MS150 bike ride later this spring, and I know from riding last year how critical the hundreds of volunteers are to making that event successful. I think that getting involved in an event like - as a participant or volunteer - that could be a wonderful way to honor your friend and meet others who are committed to ending MS.

    Thanks again for reaching out and for reading my blog.
    All the best,
    Lisa
  • Helen Olena   Mar 7, 2019 3:24 PM
    Please, if you can, take 15 minutes to read my blog suggesting a new research angle for MS. It is www.multiplesclerosishistamine.net Thank you!
  • Linda Gossett Boggs   Apr 10, 2019 1:35 AM
    Lisa:

    Excellent blog. I am truly sorry that you have MS. While living in Kansas, I met a neurologist who came to our church and played the harp during services. When I visited with her about her profession as I had worked with other neurologists, she stated that MS was a "work in progress". Learning to cope was the most difficult challenge for her patients. That was 25 years ago.

    Secondly, being the patient while caring for patients should help you to listen more intently as some symptoms are not the real diagnosis as you experienced. Listening is key as well as paying close attention to the non verbals. Are they consistent, inconsistent, or non at all? In those situations, they are scared, frightened and do not know where to turn for help. That is where you and all doctors who are also scared have an opportunity to calm them to learn to be thankful.

    Best to you and I do hope a cure is near

    Linda G