How becoming a patient made me a better physician

The year I finished my residency in obstetrics and gynecology and began to practice medicine, life was intense, fast-paced and very exciting. The odd feelings of numbness and pain in my back and legs just seemed to be something that came with the long wakeful nights and hard working days. I did not take the time to seek medical care myself because I was too busy and besides, I thought to myself, I was working through it, wasn’t I? Once I had time I would attend to myself. For now I had night call, babies to deliver, surgeries to perform and books to study. I knew my symptoms were strange and hard to understand. I would probably be told they were stress-related and that things would just get better or that they simply did not know what was wrong. That had happened years before when I had first felt the numbness in my legs.

Five years later, during a busy day in the office, I suddenly could not move my leg.  The feeling would come and go, but I knew that I could not ignore it this time. After an evaluation I was told that my symptoms were due to a migraine! They said that I needed to sleep more and take care of myself. Several years later, I found the fatigue and pain to be much worse. I was having trouble walking. I was seen in the ER and had an MRI. Sitting in a neurologist’s office, my husband and I heard the not unexpected diagnosis of multiple sclerosis for the first time. What we had not expected was the moment the doctor said, “So, you need to stop practicing obstetrics and I will see you in a year.” I was stunned.

As a physician, I have had difficult news to deliver and I know how hard it can be. But this was beyond anything I could imagine. This neurologist seemed heartless. He offered no discussion of treatment options or instructions on how I might proceed in my life. In confusion I sought out other neurologists’ care and found that they recommended treatment with disease modulating medications. I stopped practicing obstetrics but continued my practice in gynecology. I found a physician who listened and worked with me to find a medication I could tolerate. She helped me find ways to accommodate to the challenges of MS. Her compassion and sensitivity helped me accept the diagnosis and the changes I needed to make while remaining hopeful about the future. She guided me to accept using a cane and encouraged me to continue my work.

At first, I was shy using my cane and worried that my patients would be put off by my disability. To my surprise, I discovered that using the cane and being open about my diagnosis of MS with my patients actually improved my effectiveness as a physician and enhanced the relationships I had with my patients. I realized that with honesty and a good sense of humor in acknowledging my disability, we could more quickly and effectively discuss their needs and questions. I had a new perspective on patient care that came from experiencing both sides of the exam table.

I also felt more stable and could continue to work. Over the next 15 years, I transitioned from needing to use a cane, to crutches, to a walker and for the last 6 years of my practice I used a scooter. The Americans with Disabilities Act (ADA) legislation on workplace accommodations (electric exam tables and automatic door openers) – as well as the wonderfully open and helpful attitude of my medical partners – allowed me to stay in the game.

My personal experience with illness has given me a newfound respect for how people live with illness and disability. It is essential to find a physician partner in our care who can encourage us to pursue our hopes and goals and stay optimistic. We all have experiences with our health that may be very difficult, but finding a physician who will listen, encourage us and travel the road along with us can be transformative.

Through my personal journey I learned a new level of compassion for the women I took care of. I listened better, I asked better questions and now I am even more appreciative of the partnership between a doctor and his or her patients in navigating life’s challenges.

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Liz Kopin, MD

Liz Kopin, MD, is an obstetrician gynecologist who was diagnosed with MS in 2000. While the MS diagnosis interrupted her practice of obstetrics at age 45, she continued to practice gynecology in Massachusetts for another thirteen years. Now retired, she writes about her experiences and perspective as a mother, physician and human being with MS.

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  • Carla Pinho   Nov 12, 2015 3:06 PM

    I was diagnosted with MS in 2010 and know I´m try to find a job because I´m OK to work.
  • Jeanette Davis   Nov 12, 2015 8:34 PM
    Thank you so much for sharing your story. I was diagnosed with MS 5years,ago. I was just forced to retire. I know the daytime line up on TV now.I am having trouble fiquring out my next step.
    Thank you for sharing that there can be light after the darkness. It really helps.
    Stay strong and keep believing.
  • Sandra   Nov 13, 2015 5:34 AM
    Thank you for sharing your story! I was diagnosed this year (2015) and do not work. I was let go from a new job as they saw my challenge with walking and my inability to run at 100mph as I should have been able to. This all happened before diagnoses. Anyhow, your story holds tremendous hope for many. Great job!
  • Eva Marsh   Nov 13, 2015 2:16 PM
    Dear Liz, With your background in medicine, I hope that you will avail yourself to research we already have (Bunge et al 1961) first of many studies proving that myelin repairs itself with movement. I found this research when diagnosed in 1967. Told I would never recover and didn't have long. Now 71, mobile and recovered from ALL symptoms. Still waiting for system to catch up!!
  • John Spitznagel MD Liz is my daughter. I am so proud of her. I am 92 and after many years learned the truth of physician patient relation are as she says. Her optimism has served her well!!!!   Nov 13, 2015 3:40 PM
    Liz is my daughter. What she says here is so very true. After over 60 years in medicine My personal experience says it is so.
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    Lissajohnson  Nov 15, 2015 7:46 PM
    I love your story, and I'm happy that you continued with your passion for your work and you didn't let that first doctor crush your dream as a doctor yourself. Best of luck to you and continue being a great doctor.
  • Roz Knepell   Nov 24, 2015 12:55 PM
    Hi Liz,I too am a physician with MS. I enjoyed your story and applaud your courage in dealing with this challenging illness. I would love to establish a correspondence with you. Please feel free to email me. Good luck, Roz
  • daphnebliss  Nov 24, 2015 10:42 PM
    I appreciate your willingness for sharing your experience with MS. Thank you for that.
  • Destynee  Dec 31, 2015 2:24 PM
    Thank you so much for sharing. I was just diagnosed Augusr 5 2015 and started Copaxone August 30 2015. I am very active with my children and my job, I am a single mother as my husband just walked out on us December 7 2015, I am so great full I did not need him for any assistance with any personal care or finances, the emotional battle has been enough of a challenge to not have a flair up.
    Thank you so much again, you have enspired me in many ways to continue the fight even when the battle gets tougher.
  • firefly66  Jan 4, 2016 6:33 PM
    Dr. Kopin, I'm surprised you didn't tell your first Neurologist to go do something... anatomically unlikely - especially being a physician yourself. But I appreciate you sharing your experience. I have found that I have been especially fortunate in being referred to a Neurologist who immediately diagnosed me, and didn't beat about the bush, but also gave me no gloomy predications about my future. But I know there are many others who strive to find the right fit with their doctors. Americans are all somewhat conditioned to simply assume that our doctors always know best. I think hearing your story, as a physician yourself, encourages patients to be less shy about getting second opinions and searching for the right person to mange their care. I hope you remain healthy, cheerful, and as functional as possible.
  • hornermarjorie  Jan 28, 2016 9:17 AM
    Wow-- what a story... I do share that I am a RN and have had to adjust my work situation ..... I wasn't aware ADA could help me keep my previous job ... Which I liked better... But here I am plugging along -/ waiting for something -- I am close to retirement so retraining is not an option --
    Nor could I physically handle it --
    But I put a smile on my face everyday ....
  • Nancy   Feb 14, 2017 2:02 AM
    Dear Liz,
    Wow! I feel so happy and proud of you. I was a nurse for 30 years and wham, everything hit. I ran out of FMLA and so I was put into retirement. I was a friggin good critical nurse, and labor and delivery. I have found from a nursing standpoint people, coworkers are unforgiving because I'm not fast enough. I take too long to go to the bathroom. My vision is poor. But I read your story and it gives me hope. I was so defined by my career. I miss it. Keep going. I'm so happy for you!
  • S. Boyd   Apr 17, 2018 10:30 AM
    My daughter is in her first year of DO school and just went to the eye doctor for disrupted vision in one eye. The doctor said it is a 50/50 chance of MS, and she is waiting to have an MRI. Your story is a great encouragement. Thank you for sharing.
  • Perle Gordon   Aug 26, 2018 3:33 AM
    I am also an OB/Gyn diagnosed with relapsing/remitting MS. I was certified to continue all aspects of my career including OB. Unfortunately, I was discriminated against my a hospital I had held privileges at for 10 years. I was forced to undergo a neurocognitive exam by a complete stranger to me under threat of losing my privileges while I was actively on call and had just performed a c-hyst in 45 minutes, and already delivered a baby with one in labor. My own neurologist’s certification was unacceptable. I hadn’t exhibited any evidence of impairment, had only had optic neuritis, was on disease modifying drugs and felt perfectly healthy. Under duress, I consented to the exam and passed 100%. This decision was made by the hospital president, a business man, with no committee evaluation by my peers. The CMO admitted the exam was based solely on my carrying the diagnosis.

    I was fired from my job of 10 years in an inner city clinic a few months later. I have dedicated my career to nonprofit service. I found a second job a thousand miles away. The stigma followed. I’m supposed to have my home loaded in less than a week, I purchased a home in the new location, and I’m needed. I’m a good, compassionate doctor. An excellent surgeon. I’m seasoned with 10 years experience in a resource poor environment.
    I came from poverty. I remember eating potatoes for weeks at a time, all three meals. I didn’t go to high school. I worked my ass off to be the doctor I am today. And yet the stigma follows. My new clinic doubts my capabilities. I almost didn’t get hospital privileges. Ultimately I did. But the pain and deep hurt of losing my patients, being humiliated at the hospital, and now being outed in my new position is intense. The question on licensing applications and credentialing forms is illegal. Nothing is done. The career I climbed to hungry and poverty stricken and yet graduated with a 4.2 GPA, honors, and voted Most Ourstanding Senior, was published in scholarly articles in undergrad and received awards for my research and presentations, received teaching awards as well as hightest score awards on CREOGs in residency, and again awards in research, and teaching awards in clinical practice. All I ever wanted to do was work in a nonprofit and my career is being slowly eroded by stigmatization. It’s so unfair.
  • Norah Baker, MD   Oct 20, 2018 12:00 PM
    This story was inspiring and I would love to hear more about your journey. I am also a physician with MS. I’m a Family Medicine Physician trying to keep up with the demands of being a hospital-employed Primary Care Physician. Any tips?