IBD and Work
I get a lot of questions from fellow IBDers about how I handle work and IBD.
My life B.C. – before colitis – was a very busy and exciting one. I worked in Washington, D.C. as a political journalist and then in public relations, both jobs that are not known for having traditional 9-5 work schedules. My work days could range from a normal 9 hour work day to pulling an all-nighter to meet a looming deadline. Travel was also a part of my job, especially when I got into PR
About a year before my first major UC flare-up my new husband and I decided to leave Washington, D.C. and the world of politics and PR and relocate ourselves to the mountains of Northern California and work as freelance writers and PR practitioners. About six months later I had my first bout with chronic diarrhea, weight loss, low energy, and achy joints. This flare-up (of what, I didn’t yet know) lasted about three weeks and made me glad that I wasn’t working in my previous corporate job.
Another six months down the road and I was hit with another flare-up, this one much worse than the previous one. For months I was flummoxed, my doctors were flummoxed and I was so sick I was unable to work more than an hour or two a day. Even after I finally got a diagnosis and started on medication to help get the flare under control I had very little energy, was making up to 30 trips to the bathroom a day, losing weight, running on empty in the energy department, and again, very glad I wasn’t working in a traditional job. If I had, I reasoned, I would have been fired long ago. It took about two years for me to get that flare under control and back to being able to work full-time again.
But, that was ten years ago now and I’m still self-employed. I work 6-7 hours per day, on average, travel quite a bit for work and pleasure, lead a good all around life outside of work as well. Most recently, I was back in Washington, D.C. for seven days of talks, book signings, parties, meetings, and social engagements. It was akin to being in my life B.C. The major differences between then and now, though, were knowing what I could and couldn’t eat and drink, getting at least 7 hours of quality sleep per night, where possible not scheduling anything before 10:00AM –if my gut is going to go off it almost always happens in the first part of my morning – and knowing that if I really had to I could cancel any or all of my events and the world would not come to a screeching halt.
Being self-employed provides me with a lot more flexibility than working for someone else, and it works well for me. However, it isn’t for everyone. Being self-employed comes with its own stressors and difficulties. First, and foremost, is that if I’m not working, I’m not making money so self-motivation even when I’m not feeling 100% is very important. And since I don’t ever know when my UC might flare-up I make the most of each good day that I have. When I get paid by a client I am sure to pay myself first so that I always have a 9-12 month cushion of savings to live off of should I not be able to work. I also have to pay for my own health insurance which is very expensive, but necessary. One ER visit or hospital admittance could put me into serious debt if I didn’t have health insurance. So, I am always sure to pay my premiums on time and to never, ever let my insurance lapse. If it were to lapse then I would have trouble getting another insurance policy without a pre-existing condition clause that would preclude my UC and any related expenses. But, some of the trade-offs with being self-employed are that I can make my own hours, work on projects that are interesting to me, vacation when I want – with the internet I can work from anywhere, and not have to fret that I’ll lose my job if and when a flare-up hits.
As most of us living with IBD know, we are all going to have times of active disease and flare-ups and times when we are in remission. And this will be a challenge no matter what kind of work we do. I have found that being honest with clients about my condition is usually best on a need-to-know basis. If I’m feeling well and not having any gut issues then it’s not necessary for me to discuss my IBD. However, if I’m working on a project and I get hit with a flare-up and need to spend less time working or, worse, have to take off of work for a few days or weeks, then of course I must discuss my situation. I have had to ask clients to push back a deadline, or work on a short-term basis with another freelance colleague of mine, but as of yet I’ve not lost a client due to my illness.
Now, all that said, I know plenty of people living with IBD who work traditional office jobs, as well as not so traditional jobs. Did you know that Presidents John F. Kennedy and Dwight D. Eisenhower both had IBD? Or that actress and former Miss America Mary Ann Mobley has Crohn’s disease? And, John York, actor on General Hospital also lives with IBD and is a spokesperson for the Crohn’s and Colitis Foundation of America (CCFA). There is life after an IBD diagnosis, there are just times that might be harder than others.