5 Reasons Office Life Is Hard When You Have a Chronic Illness

I never claimed to be in overwhelming pain at all hours of the day, but I live with the side effects of my ulcerative colitis on some level all year round. Since high school, I don’t remember a day when I wasn’t in some sort of pain.

But despite my being completely open about my disease and my needs, I secretly feel guilty. I’ve used up all my sick time at this point, little by little, by trying to go to work and failing. Even as I write this now, my fingers are swollen and painful from the inflammation. And it’s a vicious cycle. I go to work and I get stressed out — trying to be the perfect employee I once was. But, I’m so incredibly tired. Right now, I can feel every joint in my body throbbing. Yet, I’m still here at work, writing this article on my lunch break.

This stems completely from not feeling “sick enough” to leave or take a break. My “normal” is some level of inflammation, and some sort of problem with my gut at all times. I see other UC warriors and watch as they have surgery, endure hospital stays and quit working all together — and it makes me feel very strange. I’m not at that point yet, and I am terrified to get to it. In the meantime, I feel like I’m not qualified enough to take time off, or even write this article. Why is it I struggle so much with working when I’m not even that ill?

Office life is hard. There’s gossip and everyone knows everyone’s business. Despite telling everyone about my autoimmune issues myself, I still go unnoticed and unbelieved. One of my coworkers teased me about using the elevator to go downstairs recently, and it prompted me to write out five things about office life that make disease hard – and five ways to attempt to fix those issues:

1. Office gossip.

Everyone’s going to talk, so if you choose to share with select co-workers that you are struggling with a chronic illness, they may find themselves sharing it. I am incredibly open because it allows me to have control over what information is passed on. I truly don’t mind that people know why I’m walking so slowly or why I get up from my desk so often, but this is a choice you must make.

2. Rigidity of office work.

Most of the time, your work may be at a desk, sitting in an uncomfortable chair and typing/staring at a computer screen all day. For me, frequent movement sometimes helps my joints to loosen and hurt a little less. I will print things to a farther printer, go tell co-workers things and run errands. For your disease, this may be a plus.

3. Meetings.

Oh, meetings. Sometimes they drag on for hours, and I cannot personally sit that long. But, frequently jumping up from them seems rude if everyone at the meeting doesn’t know why. If you are unable — for any reason, no judgment — to explain why you must excuse yourself from the meeting, you can let the meeting attendees know you’re expecting “an important phone call” to be able to jump up and leave incognito.

4. Full-time jobs.

Yes, we all need them to survive, and all I want in life is to advance and achieve a living wage. I work in a non-profit and those jobs are few and far between. I would need to be the hardest worker and the most dedicated person to do that. But, I can’t. It is horribly difficult to accept that for someone who needs work to feel fulfilled (and to eat). I work with my supervisor a fair bit to flex my schedule and work from home when I need to. That falls under reasonable accommodations in my book and thankfully in theirs. Don’t be afraid to bring it up, and to figure out what you need to be successful.

5. Guilt.

This goes with the last one. All our lives, we are taught that working around the clock and working incredibly hard is the way you will advance. I feel a lot of guilt that I am “not sick enough” to excuse not doing my best. Since I can get up (reluctantly) every morning and show up for work, I feel like I shouldn’t be complaining. Not to you, and not to anyone. But I know I’m still a dedicated employee, and I’m really good at my job — even though I can’t dedicate all the time in the world to my job because I need to do some healing. Never forget to forgive yourself when you are not the employee you think you should be.