5 Lessons I've Learned About Dealing With a Chronic Illness in the Workplace

As a regional account manager for a large corporation, I get the opportunity to travel all around the world. Some weeks, my job requires me to fly roundtrip from Hong Kong to London, only to take the same route two weeks later. Although this travel can seem glamorous, it takes its toll on the body of someone with a chronic illness.

Seven years ago, I was diagnosed with left-sided ulcerative colitis (UC) after experiencing months of abdominal pain, blood in my stool, weight loss and extreme fatigue. At the time of my diagnosis, I realized I was not as invincible as I thought I was at 20. However, I never saw my disease as limiting my ability to achieve what I wanted in life. I didn’t realize not everyone would share my perspective.

I was able to live without any limitations for four years until my health suddenly declined. My left-sided ulcerative colitis progressed to the more severe pancolitis, involving my entire colon. My doctor said that if I was to save my colon, I would have to go on immunosuppressive medications. This meant facing a future where I had to be ever vigilant about my surroundings. It meant bringing hand wipes with me wherever I went and avoiding friends who had any symptoms of a cold or flu. While this was inconvenient, I still never felt it would affect my ability to work a normal job or to socialize with friends. This year, I learned that some believed my disease should disqualify me from my dream job.

After telling one coworker about my disease, this person questioned whether I told the company before I accepted a job assignment that required me to live and work abroad. In that moment, I was fearful this coworker would try to use my illness against me or cause unnecessary commotion within the company. I quickly explained that my manager and executive sponsor have always accepted my illness as a part of the employee package when I was hired.

This was where I learned my first lesson of dealing with a chronic illness in the workplace: ignorance stems from a lack of information rather than blatant discrimination. Therefore, sometimes, it is necessary to educate those around us about our illnesses, what expectations we have from them (in my case, help for the current situation), and that chronic illnesses do not necessarily affect our ability to do a job, but rather the process by which we complete the job.

The fear I felt during this conversation was similar to the unease I had experienced while on the job hunt after graduate school two years ago. I knew I wanted to work abroad in some capacity, but I was worried that no company would knowingly hire someone with a chronic illness or that my requests for U.S. medical insurance and home leave trips to see my specialists would be deal-breakers.

Gathering all of the nerve that I had, I called each potential employer to explain my situation. I never mentioned “ulcerative colitis,” but I did say I was battling an illness that required ongoing treatment. While most of those I spoke with were accepting, one employer inquired about my illness and what doctors I needed to see. Uncomfortable with answering those questions (FYI — he was not legally allowed to ask that), I simply stated that I had a chronic illness and these requests were non-negotiable. This is where I learned my second lesson of dealing with a chronic illness in the workplace: always stand up for what you need to be healthy. Sometimes, coworkers will not understand that it took time to find the perfect doctor or that certain medications are only covered by certain insurance plans. However, our number one priority should always be our health, and we need to fight for our own best interests.

When I fell so severely ill that I required hospitalization only a month into my current job, another fearful thought I had was not about my health, but that I would lose my job. While ruminating on these thoughts, an executive at the company told me that my worries were unfounded. “Stop being silly, you will not lose your job over an illness,” she said, “Rather you should worry about losing your job only if you are bad at it.” My manager would later call me to confirm what she had stated: that my job was secure and to focus simply on getting better. This is where I learned a third lesson of dealing with a chronic illness in the workplace: your manager can be your best advocate. Soon after I was hospitalized, I disclosed to my manager that I suffered from ulcerative colitis. Since then, he has worked to accommodate any home leave trips, doctors appointments, or days off that I might need while dealing with my chronic illness. In short, he sometimes has been able to fight battles I could not win by myself.   

After returning from a short-term disability leave, many of my coworkers did not know to interact with me. Should they mention I was ill or should they ignore it all together? One of my colleagues even warned me to “be careful in the new office,” as the dust from the recent interior remodeling could get me ill again. Most interactions were awkward at first, but over time people accepted that while I had been ill, I should be treated as any other colleague. This is where I learned a fourth lesson of dealing with a chronic illness in the workplace: discussing your chronic illness with other people can sometimes make them uncomfortable. Coworkers, at times, do not know what to say or how to act when dealing with someone who has a chronic illness. I have found that if I am comfortable with discussing my illness and expectations, they also become more relaxed in their interactions with me.     

Becoming more comfortable in my surroundings, a colleague of mine invited me out to lunch one day to get to know each other better. He asked why he had not seen me around the office that much. I delved into my typical story of how I picked up a nasty viral infection due to my immunosuppressive medications for my UC. He got silent for a moment and then said one of the most surprising things I had ever heard: “I totally understand that. After a few weeks in Hong Kong, I was diagnosed with colon cancer and had to go back to the U.S. for radiation treatments.” This is where I learned the fifth and final lesson of dealing with a chronic illness in the workplace: you are not alone in your pain. After being in pain for so long, it is easy to get caught up in our own battles for health and forget there might be others out there in pain, too. I had been so focused on my own struggle that I did not realize that this coworker of mine was facing his own. He has since become a good friend of mine, and he is one of the few people at work who truly understands what I go through every day. If I had not taken the opportunity to get to know him, I might have continued to feel isolated by my illness.

My experiences in dealing with my chronic illness in the workplace have challenged me to be more patient with ignorance, to advocate for my own health, to deal with uncomfortable situations, and to empathize more with those around me. When entering the workforce, I never wanted pity for having ulcerative colitis, nor did I expect praise for living with it. After all, I see it as much a part of me as the color of my eyes.

However, I do continue to challenge my coworkers, friends and family members to accept that my disease does not limit my ability to succeed at my job or to achieve all of my dreams. I am as capable as others, just with much more hand sanitizer and medication in tow. I am proud of who I am, ulcerative colitis and all.

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