The Isolation Of Hiding My HS From People (Part 2)

In case you missed it, check out Part 1 of this series!

Eventually, at the end of the semester, I came clean. For our Movement, Voice, and Acting classes, we were required to keep journals and track our progress with things like repetition and scene work and whatever else we were working on. We'd turn our journals in periodically throughout the semester to be graded on our consistency with logging our work.

Writing about living with hidradenitis suppurativa

For my last journal entry for my Movement class, I finally wrote about having HS and how painful the boils were and how I didn't mean for my participation in class to come off as half-attempted. I wrote about how embarrassed I felt because of it and how I wished I could do more in class. And while I felt the most comfortable confiding in my Movement instructor, I was still nervous to tell her.

To my surprise, she was actually really receptive. She was sweet and empathetic and offered to meet with me if I needed to talk to someone. At that point, it was way too late to redo any work I'd missed from missing class due to a flare-up, but I still managed to pass the class with an acceptable grade.

Shutting myself off from people made college lonely

College was a lonely time for me. People didn't make me feel that way, but shutting myself off from people did. I was just coming to terms with HS and type 1 diabetes and I was struggling so much to manage both. The pain kept me in my dorm room because I just didn't have it in me to put on a brave face and pretend to have a good time when I was out with my friends when all I wanted to do was lay down with some warm compresses and tea tree oil.

I was unintentionally standoffish with family members when I went home for the holidays. I spent most of my time home either working my old transcription job or in my room alone. As an introvert, I naturally feel more comfortable spending time with myself, but this felt different. I felt a need to be around other people, but a huge resistance around actually doing so.

I didn't understand it at the time, but chronic pain from HS and fatigue from having high blood sugars impacted me more than I thought. I had no desire for activities I used to love and no energy to do them during the times I actually did want to participate. I had little contact with friends or much of the outside world other than work. And I worked in transcription, where I wore headphones and was silent for 90% of the day so I didn't get much socialization at work either.

I was living in my own isolated bubble. And I felt like it was killing me.

It's important for me to be around others

During times like that, I learned how important it was to be around others. I eventually learned to open up to family and friends about how much I was struggling. To this day, I still downplay my pain to my friends that don't have HS (which is most of them in my day-to-day life).

What can I say? I still struggle with feeling like my problems are burdening others. But at least now I can tell others about needing time to myself because of an HS flare-up and I'm learning to not feel bad or guilty about that anymore.

The HS community has made me feel better about that, along with sharing my story and hearing the stories of other people. People simply need other people in some capacity. And being open about HS may not cure anything immediately, but deciding to be more vulnerable about it keeps the isolation at bay.