Hi, my name is Jemma and I’m a 30 year old woman from the United Kingdom who has HS Disease.
This is my story
I first had symptoms when I was a teen, and both of my armpits became infected. As a young girl I was so scared, I didn’t tell anyone or seek medical attention. It took having a flare up on the back of my neck to finally see a doctor.
It took a month to get diagnosed with HS, but if I had looked for help sooner I’m sure I would have got diagnosed at an earlier age. There are 3 stages associated with HS and I’m in the most severe, which is stage 3. Along with HS I also have problems with Depression and Anxiety. Due to being on antibiotics for all these years I feel that has made one affected area improve. Currently, my treatment plan is taking Humira. I have been on it for over a month now but there is no sign of improvement as of yet.
The areas of my life that HS has impacted the most would be my ability to work. I haven’t worked for a long time due to previously needing to have days off when I was in pain. I have experience in retail/customer service, so if I ever am able to work again I would most likely go back into that. Also, I would like to do things all the time without having to sometimes cancel plans. I try to stay positive by taking some self-care days 3 times a week and listening to music.
I feel our bodies go through so much having this horrible disease, and it makes you feel great and refreshed. My self-care routine includes things like getting my eyebrows done or having a nice relaxing bath with a glass of wine. Music is a great healer and it always puts me in a good mood. Some retail therapy is also great.
I have discussed my condition with my loved ones. They are a lot more understanding of my condition now compared to when I was a teen and are very supportive of me. My own Hero in my life that helps me get through the extra hard days is my Mom. I look up to her so much, but she’s not perfect.
There are several tips and tricks I use to help manage my HS that might be helpful to other Heroes living with HS. Things like using a hot compress to heal burst a flare or applying Manuka Honey to open wounds to help the stinging. I put the honey on clean wounds before applying the dressings/bandages I put on the area which apparently helps with healing.
I also drink plenty of water and I use antiseptic cream to numb the pain, this also helps make abscesses burst. A positive experience I’ve had related to my HS is having one abscess close after years of struggling to cope with that specific area.
Something that I would tell a fellow HS Hero who was struggling, or a newly diagnosed HS patient would be is do your research. You may find that dermatologists don’t give you all the information you should receive. If you follow support groups on Facebook and Instagram you will be surprised how many HS warriors are spreading awareness as well as talking about their journey to help others.