Why We Need Bosses With Chronic Illnesses

Working while managing a chronic illness that doesn’t take a break between the typical 9-5 p.m. workday is sometimes nerve-wracking. How will my boss, coworkers and clients handle situations that require me to put my symptoms first? Will symptoms hold me back from achieving the professional goals I set for myself? Can I do it all – take care of my kids, the house, my marriage and my health? These thoughts go through my head as I start applying for jobs, and it makes me so thankful for the earlier employment experiences I’ve had over the years.

I took on my first “real” job about a decade ago, fresh out of college. I was quick to hide any symptoms of Crohn’s disease from anyone at work. I’d use a bathroom on a different floor of the building, take over-the-counter meds that helped to ease some symptoms and fake reasons why I may need to leave the room (Did I lock my car? I’ll just go quickly check…). Early on, I’d even refuse to eat during the day, to avoid the way that abdominal pain could quickly ruin a good day. I didn’t know what people would do when they found out what I was dealing with, so I found it best to keep it to myself.

Of course, after some time, it became difficult to hide everything. I knew I could get my work done, but it would take some changes. Luckily, just as I really began to struggle, a new boss took charge of my department. He was sharp, passionate about producing good work, dedicated and also legally blind. As I watched him move through each day, taking advantage of assistive devices and asking for support when he needed it, it gave me the confidence to ask for support so that my disease wouldn’t hold me back either. I came clean to him about what was going on. He immediately supported whatever I needed so I could get my work done, which sometimes meant I would work from home or flex hours so I could get blood work or medications taken care of. In turn, I continued my hard work, and he was quick to support me, because I was able to produce work that deserved it. After less than two years, I would achieve a promotion that he and I were both quite proud of. I can’t imagine accomplishing that task without coming clean about the challenges I had been facing.

Unfortunately, though, even workplace adjustments wouldn’t keep me out of the hospital. As I settled into my new role, I experienced multiple severe intestinal blockages I just couldn’t take care of on my own. I even went to work one morning that’d end in the E.R., and still had my badge and office clothes on when I was admitted to the hospital at 2 a.m. the next morning. I panicked when I realized that it would take a little bit of time to recover. Flexibility from a boss was one thing, but what about while I was gone? Would I be replaced? Would my employer worry I wasn’t dependable? Of course I wouldn’t be replaced and they wouldn’t fault me for illness, but these things went through my mind and worried me far more than the visits from the surgical team. My boss would tell me over the phone to take all the time I needed. Again, when I would need more time in the future for a possible surgery, she’d be happy to give me all the time I needed. This thoughtful boss? She was fiercely dedicated to our clients and everyone knew it, but she’d also recovered from surgery associated with multiple sclerosis the year before, so she totally understood.

Even now, as I look for advanced work, I’m supported by the owner of the little consulting group that has kept me moving forward with per diem hours while I’ve balanced pregnancies, parenting and my health. He always says that he “gets it” because he’s also a caregiver to his wife with dementia. He has appreciated the balance that work and health requires. What’s more, he’s always cheered me on whenever I advocate for Crohn’s disease and patients like me.

I’m cautiously optimistic as I think about possibly taking on another new company, boss and colleagues. Hopefully they’ll be just as warm and welcoming to supporting good work as I’ve experienced in the past. More importantly, though, I’ll remember how they made my working experience possible, by providing: a safe space to advocate for flexibility and assistance, time away to get well when it’s needed and support and encouragement to maintain balance and advocacy. It’s my turn to pass on as much of these supports as possible. Because bosses with chronic illness rock.