I Found My (Hidradenitis Suppurativa) People

I’ve always been an oddball. I didn’t quite fit in with the farm kids when my family moved from a big city of 1.5 million to a town of 300. I was a cheerleader, but I also geeked out with the theater kids. I walk around singing every day (much to the dismay of my friends). And despite a robust circle of close friends and a wide circle of about 80+ acquaintances, I don’t know of anyone who has hidradenitis suppurativa – or at least, anyone who has been willing or able to talk to me about it. So actually being able to share here within the HSDisease.com community has been a huge event.

I didn't know how to talk about HS

Of course, getting the diagnosis was a big step. I’ve talked about how it took me 9 years to get to that point. I kept my symptoms to myself, because how in the world do you talk to your friends about such an intimate part of your body? It’s not a subject that I would talk to my female relatives about; we’re just not that way. The bigger issue is not only where it was located for me, but how it was presenting. It appeared as a power-packed infection. I mean, if you know, you know. But at that time, I didn’t know.

And the pain was insane. I didn’t know how to explain that either. I couldn’t relate it to anything else that I had – and I had a lot. I had a cerebrospinal fluid leak for a year, and that was pretty excruciating, but it just wasn’t the same. A flesh volcano is the only thing I can think these things come close to. There were times I walked a bit funny or waddled like a penguin. That much pain is really draining too, so I've been so tired that I have felt as if I have been hit by a freight train.

Research is my friend

Finally getting a diagnosis allowed me to do research, which allows me to take back just a modicum of power. This is a common theme in my life, as I have received many diagnoses that come with the phrase “But we can’t really do a whole lot.” It’s the curse of having complicated and rare co-morbidities. I read articles published in medical journals and discovered that there are a lot of approaches to HS that have just come to be known in the past two decades that don’t involve simply bathing, poking and draining, and have given me hope. Research is my friend.

I have taken ideas to doctors and have asked them to let me try some things; sometimes we have had some success, and sometimes not. But I feel like we are the ultimate guinea pigs. Some things are attempted out of desperation, which is a bit scary to me, and I feel like we still need to err on the side of caution, as much as we just want this disease to be gone from our bodies.

Learning from others

Belonging to this vastly different group of people has allowed me to learn from other people what has worked from them, and what hasn’t. It also has shown me that different areas of the U.S. and different areas of the world very much influence how hidradenitis suppurativa is treated.

In cultures where holistic medicine is embraced, we won’t find many examples of treatments that include, say, different types of lasers, but that rely on more herbs and diet regimens. This has broadened my knowledge base simply by exposure, and is extremely valuable as I pursue treatments that are both effective for me and possibly less harsh on my body. It has truly been fascinating to see how vastly different HS is treated depending on where someone is located around the world.

I found my people!

Best of all, I found my people! Those of you who have either experienced HS firsthand, and know what it is like to have vicious volcanos all over your body, or those of you who care for those who are worn down by this disease. It is such a relief to be able to discuss these things openly, and not have to start out fresh every time with first an explanation of hidradenitis suppurativa. We all start with the basic knowledge that it’s awful.

I’m so grateful for my fellow patients and caregivers who willingly and openly share their experiences as we go through this very difficult journey together. I hope you all find your people too, whether you are singing, working on a farm, running through a big city, cheerleading, or whatever it is you do to get you through this life.