The Mighty Logo

The Challenges I Face At Work As Someone With Hidradenitis Suppurativa

The most helpful emails in health
Browse our free newsletters

I timidly knocked on my boss’s door, dreading the conversation that was going to happen in just a few moments. After five months of 10- to 12-hour days filled with chaos, my body had given out. My hidradenitis suppurativa (HS) was flaring up worse than it ever had before. I had lesions all over my body — both underarms, on my breasts, in my groin area — and I could barely walk. I masked the pain with a smile and hid in the bathroom when I could, so I could just break down and cry as I changed the gauze dressing under my arms that were leaking pus and blood. I was also battling intense clinical depression and generalized anxiety disorder. 

“Hey, I need to talk to you about something important.” My boss looked up with concern in his eyes. I was very fortunate that he knew about my HS and had tried his best to accommodate my pain, letting me work from home on occasion and giving me time off for doctor’s appointments. “I have to give my two weeks notice. My mental and physical health has declined so much that I’m not able to do my job. I need to take some time off to focus on my health. I’m really sorry.” He told me he was really bummed and would miss having me as his assistant, but he understood, which I was really grateful for.

At this point, I had been working in the entertainment industry for three years. I absolutely loved the work, but I knew it wasn’t sustainable. I couldn’t continue with the hours and unpredictability. Before moving to LA, I had dreams of being a TV news reporter, but I moved on from that dream after doctors and a college professor with HS told me stress can cause flare-ups. I worked other jobs, but I couldn’t shake my new dream of moving to LA to work in television. I knew I had to try. 

My first job in LA was an office job with pretty decent hours, but I still faced so many challenges. Getting dressed was always an hour-long process. What could I wear that looks professional but covers up my lesions? What is going to keep me cool but covered up? I always loaded up tissue paper just in case something started bleeding or oozing puss. All day long, I was conscious of where my arms were and who could see what. It made it difficult to concentrate on my job. Plus, sitting for eight hours a day put a lot of pressure on the boils on my butt. 

In November 2017, after leaving my last entertainment job, I took a long break and went back to Wisconsin to reevaluate my life and rest. I rediscovered my love for writing and started to share my personal story of life with HS, depression, and anxiety. I felt useful again. I returned to LA in January 2018 with writing assignments and a flexible, remote job where I could make my own hours and work part-time. 

Working from home has allowed me to take naps, wear comfortable clothing, and continue to focus on getting better, physically and mentally. If I’m in a lot of pain, I can take the day off. I found an HS clinic at UCLA with one of the top doctors. I am able to try new treatments that are more time-intensive, like infusions and surgery. There are days when I get angry at my disease and the time it’s stolen from me or the dreams I’ve had to give up on. I feel like I lost my 20s and no one understands what I’m going through. Most days, I feel like I am at war with my body. I see others in tank tops and shorts, and I desperately want to be like them. But there are some days when my burden feels like a gift, one that has allowed me to connect with others and better understand their pain.

I’ve even found my life’s purpose thanks to HS. I will be getting my Master’s in marriage and family therapy. I want to specialize in chronic pain, chronic illness, and medical trauma. HS has increased my capacity for empathy. I know what it’s like to not be understood by doctors, bosses, friends, family, etc. I understand the pain of trying to live out your dreams while being stuck in a body that doesn’t work correctly. I know school is going to be very challenging, but this time, I feel confident that I will be able to pursue my dreams while taking care of myself. I may have to go slower than others, but life’s not a race.

Getty photo by g-stockstudio

Originally published: January 24, 2020
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home