Hello, my name is Yvonne and I’m a 65 year old woman with HS disease. With this condition you can’t enjoy a proper social life as HS RULES. It’s up to it whether or not you can keep engagements; you have no control.
This is my story…
I started getting symptoms when I was 18, and 20 years later with the help of the internet, I diagnosed myself. A Dermatologist later confirmed it for me. I don’t think anyone can describe the pain and depression from this condition. It leaves you in agony and bed bound for days on end. You end up wanting to cut the affected areas yourself just to get a bit of relief from.
I’m retired now, but when I did work it was horrendous. I trained as a PA shorthand secretary and worked for various companies in the north east of England where I was born. Later, I moved to the south east of England where I met my husband. I then took up varying roles in Housing Associations and local council offices as a lettings and a housing officer.
Doing a job while always being in severe pain and having constantly oozing lesions is difficult. At times I could hardly walk or lift up my right arm. I felt very conscious of the odour coming from the open lesions that were dripping green pus and staining my clothes. I was also always having fevers and feeling drained.
There were also difficulties bringing up two children while looking after a home and trying to do a full time job. I find it easier now that I’m retired to rest when I have a flare-up. There is no need to stress about whether I would be able to take the children to school or go to work since I never had a pain free day.
I’ve had 12 separate surgeries to the lower half of my body. After each bout of surgery, I was bed bound for weeks on end having to have the nurse visit every day to dress the wounds. The latest surgeon wanted to perform plastic surgery, but to tell you the truth, I couldn’t put myself through anymore extensive surgery.
Now I’m on daily doses of Oxytetracycline, which I was first prescribed in 1976 when I had a biopsy done. The dermatologist said I would be on it for the rest of my life, so they must have known the disease well but never explained it to me. If I do have to come off of it for any reason the lesions flare up. I take 2 daily and on extreme flare-ups 2 twice a day.
I have also tried every medication on offer, along with having Hibiscrub baths and dressing the wounds religiously with gauze dressings. The most important thing I have found is trying to not let the lesions touch so I keep them separated with the dressings. Sometimes I put a little Sudocream, an over-the-counter medicated cream, on sore areas.
When I could, I’d try to put my feet up and relax. That though is extremely difficult when you’re trying to manage a home, children and work. When I was looking after my two young children at the time, I had no family help as they all lived too far away from me. Luckily, I could rely on my dear friends.
If I could grant anyone newly diagnosed with HS a wish, it would be to just have a pain free life. I’m in Stage 3, so I think my life would be extremely different without HS. I had to lie to my employers about my medical history because I was always afraid they wouldn’t employ me. I could only suffer in silence, never telling them about the agony I endured while working. Not even my workmates could know about my HS in case they told my employer.
Only my closest friends ever knew about it. I suffered in silence at work so as not to jeopardise my employment, as I always declared I had a good bill of health. It was torturous keeping it to myself as the pain I endured was indescribable!
Even in the heat of a summer’s day in the city of London, I always wore a jacket. I spent a lot of time commuting there, which was hard work in itself. Then if my lesions were dripping [which were under my right arm, in my groin, at the top of my leg in my private areas and all over my bottom] it was even harder. The poison would seep through everywhere so I had to keep going to the loo to try and discreetly clean the affected areas.
I wanted to reach top positions in my employment, but my promotions were always hampered by my sick leave. Also, I could have spent a lot more time with my children and my sex life would not have come to a halt.
But as always, HS RULES.