At the start of my life, I never expected to be one of those people that has to face living with a disease. You never think it will happen to you. Puberty hit, and I noticed that my armpits starting becoming itchy and painful, and upon closer examination, lumps had begun forming. I had no idea what it was.
I went to my family care doctor, and he told me that it was just caused by not washing my skin properly. That I needed to change my showering habits. Changing that did nothing. I ended up having new nodules forming, and they were painful. I went to a dermatologist, and he officially diagnosed me with Hidradenitis Suppurativa (HS). HS, also known as acne inversa (though it is not acne at all), is described as a common, painful, debilitating, and chronic inflammatory skin disease...primarily occurring in the crease areas of the skin.
It is not contagious. There is no known cause. There is no known cure. There are multiple treatments that have been attempted on many people, including myself, but none of them seem to work. I have not included pictures of the condition as they can be graphic, but they do exist. There are multiple discussion group websites for people with the disease, where others can share what has worked for them. Some think that this is an auto-immune disease, some think that new nodules can be prevented from forming through diet, but nothing is confirmed.
I have found that I have to watch how much I eat potatoes and sweet potatoes, as I end up with a new one forming if I eat too much. It's hard to give them up, as they are some of my favorite foods, otherwise I would cut them out completely. There are some treatments that have worked for me, and I'm glad that I've discovered them, but they are no cure.
Living with this skin condition has affected my self-esteem greatly. Throughout high school, I never felt comfortable wearing a tank top, or anything that would show my armpits. It's only recently that I've become more comfortable wearing tops or dresses like that, but I'm still super aware of if I lift up my arms.
Changing or undressing in front of someone new is always an anxiety-inducing experience. I'm always nervous if they'll see or make some comment about my scars. They usually don't even notice unless I point them out. I've found that every person I've told about my condition, and have shown them my scars has been fully supportive. The few that I have told, I haven't told about the pain involved though.
The pain of a new lesion forming is the worst pain I've ever felt. It usually takes about a week for it to fully form, and during that time the pain is at least a 7 / 10 on a pain scale, if not greater. Whenever I feel a new one forming though, I have found that taking turmeric pills prevents it from becoming really big and keeps it down to only a few days. While one is forming, I can barely lift my arm. It pulls on the skin, and makes the pain even worse. Before I discovered the turmeric, I would end up laying in bed all day, unable to move sometimes because the pain would be so bad. Thankfully, I haven't had a big flare up in about a year and a half. I'm just dreading the day one comes again, because I know it will.
This disease has affected my life greatly. I am nowhere near as confident as I would like to be about my body because of it. But I'm getting better about it. I feel more comfortable going about in tank tops. I don't know if I'll ever feel fully comfortable about my scars, but they're a part of me and always will be. And I need to come to accept that.
I chose to tell people about my condition because it is extremely rare for someone to be open about this disease. I'm hoping maybe someone else who is scared to death that HS will take over their life can feel more comfortable knowing they are not alone.
My name is Caitlin Aschenbrenner and I have Hidradenitis Suppurativa. Yes, it's painful. Yes, it causes ugly scars. But I've learned how to live with it. And I'm tired of treating it like a dirty secret.
