By Allison Jonergin
I feel very lucky to be employed and to feel up to working a few hours a week. So when my boss asks me to work a few more hours, it feels great. She’s happy with the work I do, and I’m happy to be there.
That being said, I have to tread carefully. I walk a fine line in order to balance working part time and living with disabling chronic illnesses. Flares can come from out of nowhere and leave me treading water.
I recently popped my hip out of joint. Maybe it could’ve happened to anyone. Maybe it was my degenerative disc disease to blame. Who knows? All I know is it took me more than 24 hours to realize something was wrong. I was limping, I was crying, but I just assumed it was a bad fibromyalgia pain day. The wait to see my chiropractor was five days. In the meantime, I was able to do some stretches that eased the pain immensely and returned my hip to its natural place. This allowed me to make it through the next two days of work until I could rest. Although I didn’t have to miss work, it made me wonder how I’d be able to keep up with workload demands in the midst of unexpected setbacks.
That brings me to another point. How does a disabled person be open and transparent about health struggles that impact his/her ability to work while also protecting his/her privacy? How much information is an employer entitled to?
I don’t want to share my diagnoses, and that’s my right. But that also prevents me from discussing the symptoms I experience openly at work. There’s a large wall between my coworkers and I for this reason. They don’t know I suffer in silence, and I prefer it that way. This barrier allows me more freedom in that sense. However, I am also constrained by this covenant. I am forced to use fewer words.
“No,” can be a complete sentence. But in order to voice this confidently, one must draw clear boundaries and decide how they’re going to be enforced. It’s easier to do this when you’ve already done the work to achieve the highest level of wellness one can while also being permanently disabled. Your progress is precious, and any threat to it is existential.
Working part time brings so much joy to my life. I’m able to earn some money and support myself. I’m able to feel productive, especially in a society that measures a person’s value by how hard he/she works.
But my loyalty remains fiercely to myself. I am the only one who can take care of me, and this is a responsibility I base my life around. So when my boss asks me if I can work more hours, I think seriously about it. I weigh the pain and exhaustion I already feel at the end of a workday with the value I could bring to the workplace by being there more. I check my schedule and see how manageable it would be to exercise, grocery shop, clean and go to doctors appointments in the time that would be left over. It is a deeply personal decision, but there is a right answer. Work will always be there, and the whole system won’t fall apart without me. But if I work too much, I can.
It’s unfortunate I can’t share this thought process with my boss. But I can emphasize that I do my best work during limited weekly hours. And that’s enough.
Editor’s note: If you have a disability and want some help negotiating workplace accommodations, disclosure, and how working affects any benefits you may be getting, give NCCI a call at 518-563-9058.