Hi! I’m Cara and I’m a 32 year old woman that has HS Disease. Because of this condition I am LITERALLY uncomfortable in my own skin every day, all day.
This is my story…
I was 23 when my HS symptoms started and it was 2-3 years later that I got my diagnosis from a Dermatologist. I am employed fulltime in an office setting and do a variety of jobs there. However, no matter what I’m doing my flare-ups affect both my job and my mood. It hurts to sit, move around, sit still or sleep and the humid/warm weather makes it worse as well.
I’d describe the pain from HS like a needle puncturing your skin from the inside out. It’s always there but movement makes it worse and more uncomfortable. It’s the type of pain where you could just lay down all day with ice packs.
There have been several challenges having HS in my life. Emotionally it depresses me a lot. I feel self-conscious in front of everyone, especially with my boyfriend. I also get frustrated at hating the way I look because of HS and it’s hard to change that. Socially I have broken plans or not attended events due to the pain and mood that comes along with the condition. I know that people don’t understand it and that hurts. It’s not like I call off plans or don’t attend something as an excuse!
I also have difficulty or an inability to exercise. It makes me flare up even after just one workout. If I have a bad flare or open wound I’m unable to exercise at all. So now I have issues with being self-conscious about my scars, my flare ups and my weight.
I’ve tried a lot of different things to manage my HS, but so far nothing has worked. Right now I’m off of birth control and on Spironolactone. It is a pill usually taken for high blood pressure and fluid retention but it has hormones in it that have worked for some people. It wasn’t working for me but I’m on a higher dosage as of last week, so I will know in roughly 3 months if it’s more effective.
Diet modification has been another way I control the disease. I eliminated regular milk and switched to almond milk. I am also making small changes to eat all naturally. I haven’t noticed any changes yet though, it’s still too soon. In the past I’ve tried antibiotics and was on Humira for about 3 months. I stopped because of heart palpitations I was getting many times daily. I also got acid reflux so bad that my throat was swollen. I am desperate to try anything that could help.
There are 3 stages of HS, and I’m in stage 3. I have constant flare-ups with 4 or more lesions at once. If I could grant a person newly diagnosed with HS a wish, it would be for a cure.
I’d also hope that they have supportive friends and family to talk with and that will go to the doctor with them.
They should also develop a pain tolerance like I have so they are able to keep going with their lives. I would also want them to find someone who understands what they have, supports them, helps them when they need it and makes them feel loved for who they are and the strength they have.
I know that without HS in my life, it would be drastically different. I’d be happier, healthier and more active. I would be at a weight that I was happy with and I wouldn’t feel I needed to cover up everything. I also would stop feeling nervous about who is looking at me if I move a certain way. I wouldn’t be in pain every day and also wouldn’t feel like I have to explain what HS is to people.
Maybe I would even feel beautiful!