Hello, my name is Joelle and I was diagnosed with HS by a dermatologist in 2013.
I wish there was a cure for HS because it changes your life for the worse. It is an awful smelling, emotionally draining and embarrassing disease that gives me feelings of worthlessness. I miss being able to do the things I used to, like running, but any sports that involves moving freely I can’t do without pain. It’s a disease where people don’t believe you when you say you’re sick because one day you look fine, and the next you can barely move.
This is my story.
The pain from this disease is awful, when the boils/nodules burst and stay open it normally feels like a bad burn. Sometimes though, It can also feel like someone is poking the nodules with a tip of a knife, it’s very painful. The nodules never fully heal, instead they keep reoccurring in the same areas as well as new areas.
There are many challenges living with HS, with the most difficulty for me coming from work. HS limits me with what I can do. My wish was to continue with the role of a Personal Support Worker. I really enjoyed it. This job required alot of movement and lifting of patients. When I get the sharp stabbing pains I risk dropping a patient. This would be awful as it is dangerous to the patient as well as myself. HS at times makes me feel weak, tired and very sore. So I knew I couldn’t continue in this field of work.
I now work in Janitorial Cleaning, with the difference being that I can go at my own pace and call in sick. It’s because I work for myself at a company that knows what I’m dealing with and is very supportive. I am still very sore some days though, and have difficulty just getting out of bed let alone walking around.
I’ve tried a few different treatments like doctor prescribed Antibiotics, Turmeric capsules, Vicks and gray clay masks. The gray clay is a powder that you mix into a paste which is sold at any health food store. When you apply it to the nodules it helps them bust to relieve the pressure and pain for the time being. Something that I find works for me, personally, is a hot bath with Epsom salts. They help the nodules bust open to relieve the pain.
The best results I’ve found for myself is the Primal Diet, as long as I stick to it. The diet is a life changing course that is not actually a diet, but a way of life. It consists of eating fruits and vegetables (excluding nightshade vegetables like potatoes, eggplant and peppers). I also avoid wheat and sugar, only have dairy in moderation but I can eat all the meat I want. However this diet has not fully cured me, I still have good days and bad days. As soon as I stop I’m back to square one.
If I did not have HS my life would be very different. I could wear whatever I wanted to and still be able to work out like I used to. I can only swim now; when I’m doing water aerobics I don’t feel the pain as much.
I’ve learned however to try to keep positive by telling myself things like “I know it’s hard at times but you can get through this!” Surround yourself with positive people who don’t judge you and will offer you the support needed to get through these trying times. I cannot do this alone, my family and friends lift me up when I’m down and give me the needed encouragement to keep me going. By taking it one day at a time until there is a cure, and we can all live as freely as we used to with no pain.