How My Ulcerative Colitis Makes Me Uniquely Suited for Leadership
Waking up from anesthesia for the first time in my life, I wondered how much my life would change based on a procedure that took only an hour from start to end. The two things I remembered in my still-groggy state were, one, my Chinese improved greatly while drugged up and, two, I was not as invincible as I once believed.
The doctor brought my dad into my outpatient room to share with us the diagnosis: ulcerative colitis. They did not know what caused it, nor did they know how to cure it. It was October 13, 2008 and I had just turned 20 years old three weeks prior. Instead of celebrating my entrance into adulthood, my birthday present that year was a 12-pack of mesalamine enemas and an incurable illness. At only 20 years old, I was told I would be on management medication for the rest of my life and that by 30, my risk of developing colon cancer increased fourfold. With all that said, my doctor assured me I could live a relatively normal life.
While my classmates at college spent their nights out partying with friends, I spent mine curled up on the floor of my dorm’s bathroom inserting enemas into my rectum. I soon became accustomed to wearing adult diapers to class under my jeans in case of sudden diarrhea. The medication caused my hair to dwindle from a luscious mane into wispy, brown strands. On more than one occasion, I soiled my underwear after failing to reach a toilet in time.
Even with my body determined to destroy itself, I pulled out a 4.0 GPA that semester, eventually graduating in the top 3 percent of my class. No one who looked at me would know I spent a majority of my time bawling from the pain on a bathroom toilet or that according to the Americans with Disabilities Act of 1990, I could be classified as disabled. All that mattered to the outside world was that I was a productive and achieving member of society.
When I first heard about the media’s treatment and portrayal of Hillary Clinton’s pneumonia diagnosis, I found myself greatly discouraged. Here society was, telling those of us who are disabled or chronically ill in the world that we should be classified as unfit to run corporations, become ambassadors or hold public office. It brought me back to 2007, during Japan’s Prime Minster Shinzo Abe’s first term in office.
Suffering unpopularity and a tumultuous political environment, Abe’s health declined. In the midst of a bad flare of his ulcerative colitis, he was forced to resign. The Japanese media was particularly tough on him for stepping down to what they labeled his “weak stomach” and succumbing to “bathroom issues.” As most people are aware, Prime Minister Abe managed to get his colitis under control and was reelected as Prime Minister in 2012. What Abe’s story reveals to me, as a fellow person with IBD, is that the world believes illness and disability should automatically exclude us from serving in the highest positions. Our place in the world is to follow rather than lead.
The past eight years living with my chronic illness has led me to a different conclusion. Instead of being a hindrance to the top jobs, those of us with chronic illnesses and disabilities are uniquely qualified to serve as our nations’ corporate and political leaders. After all, who would you rather have lead you into battle: someone who is devastated by the common cold or someone who has strapped on a diaper come hell or bloody stool?
The common argument I have heard against promoting chronically ill people to leadership positions is that our sickness would hamper our ability to carry out the duties of the job at the same level of a conventionally healthy person. Moreover, some are afraid that a sudden and unexpected decline in our health would throw the entire organization into chaos.
Contrary to this prevailing belief, a majority of those I have met who are chronically ill or disabled are some of the most health-consciously driven people. Dealing with a lifetime of illness means not only preparing for the unexpected, but also becoming an active participant in the management of one’s health.
In my case, my disease caused me to reevaluate my everyday life routine. I began to see my doctors every six months, ensure I had all of my vaccinations, learn more about what my medications did and pay more attention to the minute changes in my body. To deal with any stress or bouts of depression that might instigate a flare, I took up long-distance running. While others drink or smoke at work events, I decline in favor of a Shirley Temple or soda. This diligent management of my condition ensures that any change in blood count, any new growth or any sign of disease activity will be caught early, abating a potentially disastrous outcome for both my work and myself. Trust me, any increase in bowel activity means a trip to the doctor the next day.
Another popular argument for keeping those disabled or sick from serving in places such as the Oval Office is that we do not have the perseverance to stick with the job for the long haul. Contrary to this belief, those who go through life with disabilities or illnesses have learned the true definition of endurance. Simply living our lives is a never-ending marathon with periods of high-speed dashes followed by labored steps. At some point, we will face failure, but we know we will face success, too.
At the lowest and most severe point in my disease journey, I found myself crying in a bathroom stall at work after my seventh bowel movement in under an hour. I wiped my tears, called my doctor to schedule a colonoscopy and went back to work like nothing was amiss. That day was horrid, but the next week, month and year were better. When your greatest battle is always with yourself, you gain the fortitude to deal with any of the hardships that come with a leadership position.
One last argument I have heard against elevating the chronically ill or handicapped to the top positions is that we will be too preoccupied with managing our conditions to focus 100 percent of our time on the details and decisions required by the job. What I have learned in the eight years I have struggled with my disease is that we, the chronically ill and disabled, are the masters of multitasking, negotiation, and efficiency. After all, many of us have to liaison between doctors, insurance companies, pharmacies and billing agencies, while simultaneously performing the regular duties of our full-time jobs.
If the ability to navigate the approval process required to fill one month’s worth of experimental medication is not considered a valuable skill, then I believe it is time we rethink the requirements for our leaders. I would proudly support a leader who has rallied month after month against their insurance companies and won.
As we choose our next leaders, these argument roll around like marbles in my head. Are these arguments holding back those who are chronically ill or disabled from running for public office or even from asking for that promotion? If they do decide to enter the political sphere or take on a leadership role within their organization, what kind of backlash and opposition will they face?
With these questions in mind, I challenge the general populace to stop asking what limits those who are chronically ill and disabled from carrying out these jobs, and start examining the skills that make them uniquely qualified for those positions.
We did not ask to be saddled with a lifetime of personal hardships, but we do sometimes ask to lead our companies, communities and countries. When this happens, I hope we are given a fighting chance. When we are ready to serve, will you be ready for us?
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