A Doctor with MS: Lessons
Learned
by Herb Drill
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 contact@conillinst.org.
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 herbdrill@ableme.com.
