Challenges and Successes of Being Employed With IBD

Patient Expert
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I graduated college in 2007, and have been working ever since. I was diagnosed with multiple sclerosis (MS) 10 years ago, and with ulcerative colitis eight years ago. I have spent essentially my entire professional life working hard to prove I’m a good employee. There can be plenty of challenges while trying to be employed and living with inflammatory bowel disease (IBD), but there can be successes, too. I’m not your average "professional with IBD," but have instead managed to turn myself into more of "an IBD professional." What I mean by that is I have accepted or created my last four professional positions because of my IBD, rather than despite it. Crazy, right?

I will not be so bold as to say I know how to navigate the whole world of employment and illness, but I do have a few tips, and I hope they work for you.

Challenges of working with IBD

If you live with IBD, I don’t have to spell out the challenges of holding down a job. It is easy to see how the challenges can often far outweigh the rewards of employment. The brief list probably includes:

Getting there

Some days you honestly can’t get out of your house in order to make it to work. Feeling physically awful, along with fear about your losing your job and maybe fear of being judged, is a recipe for a shame storm.

Hiding bathroom trips

If you’re in an active flare and you actually make it to work, you now have to deal with how you can be in the bathroom regularly without making it the talk of the watercooler.

Staying awake

Fatigue is like your most annoying coworker. It never stops bothering you; it prohibits you from doing your job; and probably really frustrates you.

Disclosure

I have talked to hundreds of IBD patients about whether or not to disclose their illness at their job. This is a personal choice and it is up to you to choose what route you want to take. If you do choose to disclose, make sure to know your rights.

Those are just the challenges for someone who is able to make it to work and stay gainfully employed. So many of us aren’t able to keep a job during periods of IBD flares, and while you might have the security of being able to be home when you’re at your worst, unemployment brings its own mental and financial challenges.

Successes of working with IBD

It would be easy to write patronizingly here about how showing up to work is a real success, and how by just being there you should feel like you’ve beaten IBD. But we all know that just showing up to work doesn’t maintain careers, nor does it make you feel valuable as a person. When you’re looking for ways to define success in working with IBD, you have to look outside IBD and even outside of traditional workplace victories. I have found it more fruitful to define my successes with things that weren’t necessarily tangible. That fancy ergonomic chair in my 10th-floor office didn’t last forever. Instead, I choose to define success by things that make me feel like I am achieving something.

I often thought about how my coworkers perceived me. Was I someone they respected as a co-worker? Was I viewed as a contributing member of the team? My goal was to always have people see me as hardworking and positive, even when I felt like death on the inside.

In my life, being honest with my boss, coworkers, and myself was part of what I would consider a success of working with IBD. In the beginning, I wasn’t honest in detail about what was going on, but over time I learned to disclose in a professional and productive way. Maybe I wasn’t always there when I wasn’t feeling well, and maybe that made me less of an ideal worker, but I knew that my boss understood why I was gone. To build on this, I also measure my success on how honest I am with myself. Am I pushing too hard? Do I need to call in today? I pushed way too hard for way too long and being able to tell myself when I need a break is a major success for me.

The thing that still makes me feel most successful in my job is whether or not my job has meaning. Is it something that makes me feel good about myself and my capabilities professionally? I worked for a long time in a job that had no meaning. It paid well, but I didn’t feel successful because I knew that my efforts could be spent better elsewhere. My efforts should result in something that betters my life, my community, and the world. On the days when you can’t make it into work, or you’re feeling terrible about your disease, having meaningful work can really make a difference in your attitude about work in general.

I encourage you to make a list of things that make you feel good in your job, and also look at how many of those things you can still accomplish on your bad days. Like most aspects of life with a chronic illness, looking at your professional life as a success is all about perspective.


Jackie is an ulcerative colitis patient and the founder and Executive Director of Girls With Guts. Since diagnosis, she has been blogging her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community, and pays it forward as Social Ambassador of the IBDHealthCentral Facebook page.