A Doctor with MS: Lessons Learned

Dr. Alicia Conill’s first reaction was deep denial and depression, followed later by a new purpose—teaching medical students how it […]

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Dr. Alicia Conill’s first reaction was deep denial and depression, followed later by a new purpose—teaching medical students how it feels to have a debilitating illness. Dr. Conill was a vibrant, popular young doctor when she was diagnosed with Multiple Sclerosis (MS). Over the years, she turned a valiant struggle with MS into a curriculum used to train medical students in a most pertinent skill: empathy, or as Dr. Conill describes it, “your pain in my heart.”

A faculty member of the University of Pennsylvania (Penn) School of Medicine, Dr. Conill states, “I’d often dreamed of teaching medical students to understand the personal effects of illness.” At age 45, when she was diagnosed with MS, Dr. Conill had a thriving internal medicine practice. “I thought I understood what it was like for my patients. I never really understood until it happened to me.” After her diagnosis, Dr. Conill dug deeply inside herself and discovered a way to renew her career as physician/teacher with a prescription for empathy and personal experience.

Born to Cuban refugees, Dr. Conill says, “even in kindergarten I wanted to be a doctor.” During Castro’s revolution, her parents fled from Cuba and later she moved to New York with her then-divorced mother and maternal grandparents. When she was six years old, her mother married Rafael Conill, who adopted Alicia. “When I was seven, my parents gave me a nurse’s outfit for Christmas,” she recalls, “I got incredibly mad at them. I wanted to be a doctor.”

Dr. Conill graduated from Georgetown University Medical School in Washington, D.C. in 1983. In 1986, while serving as the chief resident in internal medicine at Mt. Sinai Hospital in New York City, Conill observed the first hint of MS. She noticed a gray area blocking the vision in her right eye. “I suspected a brain tumor and was relieved it was only optic neuritis,” she says, “I knew about half of those with optic neuritis go on to have MS, but I was much happier imagining I had a bad sinus infection.”

In July 1987, with her vision cleared, Conill joined the University of Pennsylvania School of Medicine and began building a medical practice. In March 1988, her legs suddenly felt numb from the thighs down. She had an MRI. Conill knew she had MS as soon as she saw the films. She regained feeling in her legs and dealt with temporary inconvenience of the “flare.” But over time, the flares occurred more often; she started using a cane, then a walker, a wheelchair, and finally a scooter. “The sicker I got, the more stubborn I became,” she admits, “I took on more responsibilities and hid my fears.”

This was a difficult time for Dr. Conill. She lived in a three-story townhouse with a spiral staircase. She was romantically involved. She commuted to New York to help care for her ailing grandmother and father. By early 1995, she decided to give up her practice and sell her home. Her father died and her romantic partner left. At that point, Dr. Conill considered suicide.

Medication and counseling helped lift her depression. With her mother’s encouragement, she used the inheritance from her father to found the Conill Institute. The Institute, an affiliate of the Department of Behavioral Health at the University of Pennsylvania Health System, was established in honor of her father, Rafael. She resumed teaching at Penn, and took a senior post in Penn’s Health Care System. Dr. Conill also developed clinical practice guidelines for the American College of Physicians. Her home is now built to accommodate her scooter. She drives a specially-equipped van. With these changes in her personal life, Conill is able to live independently with the help of two beloved dogs, a maid, and a part-time attendant.

As an individual with MS, Dr. Conill learned “valuable lessons” from her patients. She recalled being “thrust in the unfamiliar role of patient.” As an educator she has a “passion for teaching the things” she used to think could never really be taught. Dr. Conill explains that one of her “greatest lessons in empathy” was learning that “it requires an ability to feel, to care, and to connect on an emotional level, and it’s a critical component of healing.”

Chronic medical conditions are the leading cause of illness, disability, and death in the U.S. today, says Dr. Conill. Almost 100 million Americans have one or more chronic conditions. “Trends in health-care delivery and rising numbers of individuals living longer after being diagnosed with disabling, chronic conditions challenge the status quo. They’re evidence of the need to make curriculum changes in medical education if we’re to provide persons with the highest quality care in a compassionate, empathetic way,” she adds.

What happens after medical students make the primum non nocere promise, meaning, in Latin, to “First, do no harm?” Dr. Conill asks, can empathy be taught, restored, or replenished? She contends that traditional medical curriculums “use a heavily didactic approach for the first two years; in the third and fourth clinical years,” is when caring for real-life patients begins. “When students graduate and begin training, they have only viewed illness from the outside.”

Her curriculum, Disability Experience, has been adapted for all medical students at Penn, all senior-nursing students at Villanova University and all graduate students in psychology and in social service at Penn. It has also been used by staff of service organizations including the Cerebral Palsy Association and the National Multiple Sclerosis Society as well as corporations, such as Lucent Technologies, as part of diversity training. Since 1998, approximately 1,800 individuals have participated in her disability experience.

She teaches students to “talk to patients at eye level. People in wheelchairs can’t stand and shake your hand. Address patients, not care partners, [but] because care partners have a different perspective, they can provide additional information that you might miss in talking [only] to patients. Does your office have wheelchair ramps? Do your doors swing out so patients in wheelchairs don’t have to navigate around them? Can someone in a wheelchair use your bathroom? Evaluate the whole patient, and care, even if you can’t cure.”

“I feel blessed,” Dr. Conill asserts. “Two-thirds of those with disabilities aren’t working, and two-thirds of those who aren’t working would like to work. When people feel productive, they feel whole. Companies need to understand this, and I hope to work with more of them. After all, any one of us could become disabled at a moment’s notice.” As Abraham Lincoln said, “It’s not the years in your life that count, it’s the life in your years.”

Writer’s Footnotes

Dr. Conill speaks fluent Spanish. She is a trustee of the National MS Society and has published several articles. For her work, she won the 1997 National Multiple Sclerosis Society’s Achievement Award.

The Conill Institute is a 501(c) (3) tax-exempt, educational and charitable organization that develops educational programs to help patients, families, care partners, and employers “deal more effectively with chronic illness and disability.” The Institute can be contacted at 215-746-7267 or [email protected].

Herb Drill writes and edits www.notaccessible.com. Drill is the principal of Able Me & Associates!, providing marketing consultations to the overlooked disabled community. He is a charter member of the now international, Society of American Business Editors and Writers. His e-mail address is [email protected].

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