Isolation. Wishing I could just be like everyone else. Alienating myself because I’m different. Feeling lost and not in control. Misunderstood and judged. Many, many tears. Digging around to find myself in this mess my life has become.
No, I’m not talking about high school (this photo was taken during my favorite dress-up theme: Nerd Day). I’m one of those few annoying people who had an amazing high school experience that you’ll never see me complain about. I’m talking about Hidradenitis Suppurativa (you can get a brief understanding of my story here).
When I was in the hospital, a nurse came into my room and was like, “Oh yeah, you have that issue with pimples, right?” It was all I could do to smile and mutter, “Something like that.” As someone who has been dealing with acne since I was 8 years old, I wish that pimples were the most of my concern.
I’ve decided to break apart my explanation of the disease into multiple posts for a few reasons:
- to avoid information overload
- to keep you from falling asleep
- to maybe provide a better understanding of how it has affected me
Hidradenitis Suppurativa (HS) is a disease that involves the sweat glands. The affected areas are typically those in which a person sweats the most (underarms, upper thighs, groin, breasts). Most people are able to wash off the bacteria that are released when they sweat, but it’s a bit different with this disease.
Basically, certain bacteria colonize and then build a biofilm around themselves that is almost impenetrable. After this bacterial biofilm is formed, no antibiotic can reach the bacteria, nor can blood tests/cultures detect them (which explains why, even though I was overflowing with infection, reports always came back negative).
These bacteria burrow into the skin, and then infection begins to develop. Sometimes, the abscesses would be closer to the surface and would begin to drain after they ruptured. It was good because this relieved the pressure, but the problem was that once an abscess formed, it never healed, and eventually a deep opening (almost a hole) would form in my skin…gross and extremely painful. Other times, the abscesses would burst underneath my skin and the infection would spread, creating kind of a web of infection throughout the area. It actually got to the point to where I could apply pressure on one area and drainage would be seen at another area entirely due to the tract that had formed.
HS is different in each person who has it, which makes it difficult to treat. What works brilliantly for one person may be destructive for the next. I’ve read several success stories about probiotics and their usefulness in treating the disease, but the probiotic bacteria that comes from curd has actually been a trigger for me, which is why I’ve had to give up dairy products. Treatment is one horribly tedious game of guess-and-check. It can be exhausting, but it’s all I’ve got for now.
Littered throughout upcoming posts, I’ll describe various aspects of the disease and its effect on me (physically and emotionally). I’ll also delve into the subject of my surgeries and what my future with the disease looks like…as well as anything else that may come to mind.
Oh, and also (I just have to)…THUNDER UP.