Associate Opinion Editor
Hidradenitis Suppurativa, HS, is a very fancy word that basically means my daily life has been altered because my body thinks the hair follicles under my arms and on my thighs is actually a giant alien spaceship bracing itself for an attack. I spare you the gory details and I don’t recommend you Google Image search the condition unless you plan on being skeeved out. However, I am one of the lucky ones. I am lucky because I do not and probably won’t need to go on disability. HS does not affect my overall quality of life. I am here to tell you my story of what life has been like living with an incurable and rare autoimmune disorder that doctors treat you by guessing what may temporarily fix my problem.
Let’s start from the beginning. As a child I was always sick, constantly missing school, birthday parties, and never ever enjoyed my birthday or most holidays. My family would constantly take me to doctors only to hear the words, “nothing is wrong with her.” Fast forward to when I worked in a preschool from 13-20, I was on antibiotics almost every single month for various things. At one point I had an infection in the lymph nodes surrounding my appendix, who the heck actually gets an infection in their immune system? Me, I do.
Not too long after that is when I first discovered this weird condition, I had what I thought was an ingrown hair from shaving, seemingly logical I ignored it as I have in the past. Suddenly I woke up and what was an ingrown hair turned into a 1-inch x 1 inch opened wound under my left armpit. I went to Health Services on campus and they did what the five doctors I saw after they did, put stitches in my armpit. This quickly proved to be useless because the stitches never stayed. Finally, I went to Urgent Care in my hometown and the doctor said, “I think this is Hidranitis Supperativa but I am not a dermatologist. So you should probably go see one.”
So I did.
In November of 2017, I went to a dermatologist and they confirmed the diagnosis. They told me that it was incurable but there are three different treatment steps I can take before surgery. When I first got the diagnosis, I went into a deep depression. I joined support groups on Facebook and read the horror stories and before I was able to accept my diagnosis I cried for weeks.
Two years since my diagnosis and I am having more issues with my autoimmune disorder than I ever have. I have quickly become an expert in bandaging weird places and what types of bandages cause allergic reactions–oh yeah on top of this I am allergic to bandage adhesive. At my worst, I had sores/wounds/whatever you want to call them on both thighs, underarms, and my pelvic area. However, I am in good spirits.
While my bathroom looks like the bandage section of CVS and I often need to pack extra clothes in case I randomly have a spot open while I am out, I learned a few things about myself:
- I am a lot more resilient than I ever thought I was
- Talking to people about my autoimmune makes it a lot easier when I cancel plans
- Being an expert bandage applier has come in handy
Having an autoimmune disorder means that I am constantly at doctors, spend a lot of time picking up prescriptions/applying bandages, and I cancel plans often. But what others can do is recognize that people have visible illnesses and unless you are the one taking my clothes off you won’t be able to see mine. So if someone is talking about not feeling well or just is not able to attend an event, try to show some compassion because invisible illnesses can be just as debilitating as visible, and that also goes for mental health.