Why I Refuse To Let My Skin Disease Control Me

Back in 2011, I was experiencing one of the happiest phases of my life. I was on the brink of completing an intensive legal internship and I had just been accepted into a prestigious law school. My 21st birthday was around the corner.

A few weeks before turning 21, I developed a painful lump beneath my arm. But after a frenzied Internet search failed to provide answers, I pushed all thoughts of it aside. I had too much else on my mind. Plus, I was way too young to develop a serious disease worthy of concern.

Soon enough, however, one lump became several. Then a few of the lumps started to ooze fluid that stuck to my clothing. Suddenly, it was too painful to move my arm at all.

I’d never been to the hospital before because I’d always been healthy and active, so I was incredibly nervous. I decided not to tell anyone about my visit to the Emergency Room, hoping a doctor would quickly diagnose me with whatever it was so I could carry on with life as usual.

In hindsight, I was very lucky to meet the surgeon who treated me during that first visit to the ER because he happened to be a specialist in what was plaguing me. The doctor sat me down and explained that I had Hidradenitis Suppurtiva. He told me that this would be a lifelong condition, and that it would cause me a lot of pain and discomfort. He also said that I would likely experience flare-ups in other areas of my body, and that I needed immediate surgery to address my current symptoms.

I remember walking out of the room to call my parents, balling uncontrollably. I had never been to hospital before, let alone required surgery! Somehow, I convinced myself that the doctor had gotten it all wrong. I promised myself that I would get the surgery done and that the problem would then be magically fixed for good.

Of course, I was completely wrong. The flare-ups started happening every three to four weeks, and I had to return to the hospital again and again to have the abscesses drained.

A year later, I found myself in a place I never thought I’d be: Too unmotivated to do much of anything. The constant hospital runs, operations, and overnight stays were proving to be too overwhelming. I could not keep up with law school even though getting my law degree was all I’d ever wanted. Feeling stuck and trapped in my body, I decided to take a break from furthering my degree.

I felt so angry at myself for letting my body do this to me. I couldn’t believe that my body was producing these ugly infections on my underarms and groin. I stopped wearing sleeveless clothing altogether because I was so embarrassed by my appearance and self-conscious about the smell of the leakage from my wounds. I also stopped going out with friends because I was always either in a lot of pain, or too sleepy from painkillers.

One day, I organized a meeting with my surgical team at the hospital. We agreed that my incision and drainages could take place on the same day so I could avoid the overnight visit. That meant I’d be able to study more without being too distracted by my HS. My law school tutor simultaneously agreed to let me study from home on the occasions that attending lectures proved too difficult due to my condition.

With these small but critical changes in place, I took the plunge and went back to law school— as a different person. I went back as a young lady with a chronic skin disease who had a renewed sense of strength. Someone intent on making the absolute most of the good days.

Determined that my life should be controlled by me and not my disease, I worked around my HS. Slowly but surely, life got better.

At 25, I graduated from law school. I graduated as a young woman with a chronic disease who had finally learned to accept HS as part of her life.

I still have my down days, but HS will never control me entirely. In fact, I can honestly say that I am proud to live with Hidradenitis.

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