I’ve had HS since I was 11 years old and am now 44. I went many years without telling anyone about this disease and kept it a secret, except from my immediate family. I understand all of the emotional ramifications of this disease and the toll it can take on your self esteem. I, like all of us, have gone through many periods in life where I asked myself “why me?”. I went for years without seeking care for my HS because every time I would go to the dermatologist I would leave with another antibiotic that did nothing to help, they had nothing to offer me, so I suffered in silence. My HS affects my underarms, under my breasts (and sometimes on my breasts), under belly folds and in my groin.
I saw a commercial for Humira mentioning HS and decided it was time to visit the doctor again to see if there was another option. I tried Humira, but didn’t have any success. I gave it a 6 month effort, but continued to get flares and no relief. My dermatologist told me that she didn’t have anything else to offer me, so I was sent to the University of Washington Dermatology Clinic. I prepared to start Remicade and they asked me to have a consult with a surgeon for excisions. I told her that I was adamantly against surgery, however, after meeting with the surgeon and hearing about his experience with HS and the word “aggressive," it was love at first sight! I had both armpits and a spot on my abdomen removed via wide excision for the first surgery and then my right groin and inner thigh a month following that. I’m now 3 months out and my arms are fully healed and my groin is well on its way. This was the best decision I’ve made; not dealing with the pain every day with the active flares has changed my life.
Between surgery and the fact that I have a 15 year old daughter who just had her first few abscesses, I was forced to be honest and vulnerable to those in my life. I “outed” myself on FaceBook and shared my struggles. Through this I realized that I have 2 friends that also have HS, small world. I revealed that this was one of the most difficult things to do for me, I do not like to be viewed as “weak” and don’t like to not be helpful, so being down and allowing others to help me was very tough. What I learned during that time is that I have an amazing support system, my husband How is a trooper and loves me more than I knew. My mom is unbelievably strong and the best support I could ask for, I have some really good and true friends who will be by my side no matter what, and I am really, really lucky. This experience has made me push myself outside my comfort zone and be willing to accept help.
I have always been resilient, but this disease has forced me to be stronger than I ever thought possible. I am a firm believer in mind over matter, pushing through, persevering, and making the most of anything and everything. I believe that a positive outlook and attitude can make you or break you. My hope is that my daughter is learning from watching me be strong, not to let this disease own me, not to be afraid to allow others to help you, to be vulnerable to others, and to try and find the positive in any situation, including having HS.
Denise was supposed to make up some stuff for me but didn't, so I had to come up with my own! I’m an animal lover and have 3 dogs and 3 cats. My spare time is devoted to HS Connect, ask my family, and I have a new found love for tattoos. I have 2 teenage girls, both with HS, who keep me busy and make me feel old at the same time!
Please read my other articles:
Parenting a Young Teen With Depression on The Mighty