Managing an autoimmune disorder can feel like a second job — albeit a job that has zero pay and terrible benefits.
Just after my 15th birthday, a doctor diagnosed me with Juvenile Dermatomyositis (JDM) — an autoimmune disorder that causes muscle tissue and skin to inflame. Fortunately, symptoms become virtually nonexistent when treated properly, but the body can sporadically turn unruly even with appropriate attention.
Since entering the workforce, I’ve learned a few lessons that keep the job of being a sick person from overtaking my actual job. Here are some tips to keep in mind when working while chronically ill:
1) Disclose to the Appropriate Channels
I’m relatively young and healthy looking, so without documentation, no one would ever guess anything is wrong with me. Documenting your illness with Human Resources or whoever the appropriate channels are at your workplace is an important first step that will make the moves below much easier.
2) Ask for Necessary Accommodations
I pride myself on my low-maintenanceness, so inconveniencing anyone makes me cringe. But if you need an arrangement made to make you more comfortable, ask for it. For me, this meant having a fluorescent desk lamp that triggered skin inflamation replaced during my first week. It’s better to ask for what you need than to spend months or years suffering in silence.
3) Make Your Doctor Appointments—And Keep Them!
If reading that makes you think, ‘wow, keeping appointments you make...groundbreaking,’ then honestly, good for you. For me, the thought of missing class or work for any reason made me so anxious, I felt like it was easier to just roll the dice and hope my body kept itself together than to let anyone down with my absence.
Breaking doctor appointments because I didn’t want to miss class was a nasty habit that I carried with me into the workplace. When something feels off, call your doctor, and when you appointment date arrives, actually go. One of the most helpful things I’ve learned regarding this goal is to...
4) Inform Your Boss the Day You Make An Appointment
Rip the Band-Aid off. Email or call your boss as soon as your appointment is scheduled so you aren’t tempted to back out later. This has been crucial in treating my own illness. It’s considerate to give as much notice as possible so any necessary adjustments can be made for your absence, and you won’t have to worry about forgetting to ask later or run the scenarios of being told ‘no’ around in your mind.
5) Have Your Meds Delivered to Your Door
The last thing I want to do after a long day at work is wait in the long line at the pharmacy. Luckily, my insurance company has an option to have prescriptions delivered straight to my mailbox, and it has been a godsend. Saving time and stress is a major game changer for how I manage my JDM.
Though living and working with a chronic illness can feel overwhelming, remember to put your health first.
Kayla Heisler is an essayist and Pushcart Prize nominated poet. She is a contributing writer for Color My Bubble. Her work appears in New York's Best Emerging Poets anthology.
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