Learning To Live With My Skin Disease

For years I’ve been coming to terms, slowly but surely, with the reality that I have a serious skin disease. What I’ve experienced is not just a random string of unpredictable events. The issues I’ve faced are grave, and should be viewed as such. Luckily, if you’re suffering from Hidradenitis Suppurativa (HS), you are not alone.

My first experience with HS occurred when I was 19, and I chalked it up to a one-time event. A sort of boil that got out of control.

A year later, however, it happened again—and things were serious. The pain was excruciating. I was so weak that I could barely stand, and I was unable to eat or drink. The “flu-like symptoms” I experienced were definitely connected to what was now a full-blown abscess. I was rushed to the emergency room and the next sixteen days would mark the beginning of my journey living and coping with Hidradenitis Suppurativa.

The infection had spread into my blood stream. I was literally on the brink of death. My memories at this point are very blurred because I was so unwell. I was moved into an Intensive Care unit by necessity, in critical but stable condition. Over the next two weeks I underwent four surgeries to remove any remaining infection and to close the now massive wounds in my leg and groin. The recovery was difficult, but they saved my life!

That crucial ER visit took place twelve years ago, at a time when even less was understood about HS, so I was told by a specialist that I was just one of the unfortunate people who might have to deal with these types of infections from time to time for the rest of my life. That was it. I was back in the world with no idea what had happened, or how the hell I’d managed to survive.

Only recently, in the last two years or so, did I start doing my own research that led me to the words: Hidradenitis Suppurativa. I have experienced literally hundreds of abscesses. As I read more and more about HS, I was astonished by story after story of people all across the globe detailing almost identical accounts of what I had been struggling to cope with for the last decade. It was at this point that I was actually able to start learning to live with HS.

There are certain measures I have learned to take that help reduce the risk of a flare up, and I follow my routine meticulously. I am positively neurotic about hygiene and have made some specific clothing changes. I have also begun to take my health very seriously, and am attempting to further reduce the possibility of flare-ups via proper diet and regular exercise. While these measures have probably helped to some degree, I have come to realize that there is much left to understand about HS and I am unfortunately far from free of a life with the disease.

However, there is most certainly a light at the end of the tunnel. There are others out there sharing the very same experience that I am right now. They, along with their physicians, are doing their best to understand the catalysts for the development and progression of Hidradenitis Suppurativa. At times our journeys can be arduous, but together we can beat this. The hope is that soon we’ll live free from the limitations imposed on us by HS and be able to heal—both physically and mentally.

Like seemingly everything in life, my journey of learning to live with my skin disease is constantly evolving. I am always adapting, observing, and changing. After all, I am a human being like any other—just trying to survive the best way I can.