My name is Candice and I’m 49 years old. As a teen, I started to get lumps on my breasts, armpits, bottom and occasionally my face which coincided with my monthly cycle.
The Daily Reality Of HS
Over the years, I dealt with the pain and side effects of HS as best I could, though no one seemed to know what it was. I find that Ice packs and painkillers help to soothe the pain of flare ups. That said, I have ME (myalgic encephalomyelitis/chronic fatigue syndrome) and Fibromyalgia too so at times it is hard to tell which condition is causing my pain. My family is great, but they don’t understand the level of pain I’m in every day.
As the days are getting warmer, I’m dreading summer. HS means that underwear isn’t always an option, so summer dresses are out. The fact that I can’t wear what I want does get me down at times. HS means I stick to certain clothing styles like tops that are loose around the arms and cycle shorts in summer.
Diagnosis Came After 30+ Years
It wasn’t until about a year ago, when speaking to a local GP about my perimenopause that anyone suggested these lumps could be HS. That doctor took swabs and prescribed antibiotics. The swabs came back clear (as you would expect with HS which there is no physical test for) and the antibiotics didn’t help unfortunately.
With perimenopause, the stress of family bereavements and moving house, the flares have become more frequent and they no longer heal like they used to. For the physical symptoms I focus on keeping the wounds clean and bandaged. To be honest, the sticky edge of bandages causes its own problems as I’m allergic but it means not leaking through clothes. I use waterproof patches when I go to aqua aerobics and have explained to the trainer that HS is not contagious.
Dealing With The Psychological Side of HS
When it comes to the psychological side effects, I think that my background as a NLP Practitioner and Doula helps me. I’ve had a lot of training around how physical trauma can affect mental health. Understanding the trauma cycle and how easy it is to get stuck in that and how trauma can physically present, is a huge help.
To help combat the mental health side of HS, I have an hour scheduled every day for meditation. My whole family knows not to disturb me between 2.30 and 3.30 PM. That’s my time, I look up a guided meditation online or use the Headspace app and use the time to clear my mind. I find it really helps with the day to day reality of HS. Meditation can also help the body get unstuck from the trauma cycle. I’d highly recommend it.
Treat The Challenges
I’d love to see doctors treating the challenges of HS and not just the symptoms. To see more of a psychological approach to HS treatment alongside the medications and treatments. For anyone talking to their doctor about HS, don’t be afraid to stick up for yourself. It’s ok to say ‘I know I’m not a medical practitioner but I have researched this’. If you feel like you’re not getting anywhere, then ask your doctor ‘If not HS, then what is it?’. Keeping a diary and pictures of your symptoms will definitely help for when you see your doctor too.