Get To Know… Kerrie
Age: 31
Location: Jersey, Channel Islands
Battling HS For: 16-20 years
Current Stage: Stage 3
HS Has Taught Me…
“Resilience, but not out of choice… I’ve learnt to
trust my gut with medical professionals and to
self-advocate even if being medically gas lit.”
**Warning – Graphic Images contained on this page.
The Beginning: The Battle for a Diagnosis
It was straightforward at first, I had a lump that was so painful on my thigh, but not angry looking at all. A new GP had moved to my practice and we really meshed together; he never fobbed me off and genuinely listened to me – a UNICORN. This new GP said it was HS from the first appointment due to smaller lumps and scars from previous flares. I was 18 at the time, but the lumps had been there for years before.
She put me on Doxycycline due to me being allergic to penicillin, and it did clear up. But I gradually got random ones in random places, and they didn’t start reoccurring until just before Covid. I was referred to Dermatology, who I kept being discharged by. I was being told it was ‘just acne, you need to wash more often’ (I was washing twice a day). I tried advocating for myself after the 5th referral and went in guns blazing, which resulted in my being escorted out by security. We have very limited specialists in Jersey, and when we ask for second opinions, the doctors’ egos get offended very easily.
I have not had my HS managed. I also contracted MRSA in 2018 and was never told or treated, resulting in me now being a MRSA carrier.
Fast forward to Dec 2024 – my partner had been diagnosed with Stage 4 Cancer, and a brand new Dermatologist had taken over. I’ve been officially diagnosed Hurley Stage 3 and it was explained to me that this is due to lack of medical management by the previous Derm. They couldn’t be more sorry and are now doing everything they can to get me under control. I’ve tried Humira and it failed, so now I’m waiting to start Cosentyx, along with travelling to London for a consult to discuss surgery and other options.
My Reality in Images
The Unseen Battle: The War on Mental Health
My mental health has been severely impacted, to points I’ve attempted to take my own life due to pain, medical gas lighting, feeling so alone, disgusting, and tired all the time. I always push myself too hard, and I always feel like I’m letting people down, BUT I’m slowly realising they are the ones putting unrealistic expectations on me.
I also have body dysmorphia to add to the fun. I am always conscious about how I smell, even at home. I’m fed up of not having a ‘style’ because I can’t and won’t risk nice clothes; I feel like I can’t dress up. I just feel like I’m always grieving about my life and I’m so envious of others.
I used to be slim and fit, and now I’m the biggest I’ve ever been and unfit, but also unable to exercise. I used to jog twice a day, walk dogs, ride horses including my own, and I really thought that would be my life. I have an unhealthy food relationship as it feels like the only enjoyment I have left.
Finding What Works: My Non-Medical Armoury
Finding all these HS pages has been really helpful in not feeling alone. I found a weird power when I started advocating for HS and created a local Channel Islands page to help others. Hot compresses have really helped in pain relief, and Germolene/Germoloid Creams have been amazing also. My skills in dressing my own wounds have stopped unnecessary journeys to the nurses.
Witch Hazel wipes have been great for wiping my armpits as I can no longer wear deodorants. Period pants have come in handy for groin abscesses as well as period panty liners in the armpits stuck to the t-shirt. A disabled badge has changed my life – I’m less anxious about going out. Having someone you can confide in – a friend, partner, a stranger on an HS page – can be really invaluable. And finding something to motivate you, even just to get up for 5 minutes, can help mentally. For example, my cat Mouse is dependent on me, and my partner and I always make sure I try and get up for her
My Moment of Strength: “Fuck You, HS“
The fact that I’m still here feels like a massive win and fuck you against HS. Whilst also advocating and raising awareness in hope of a cure, a treatment that puts you into remission for everyone is a big win and feels empowering as a warrior of this condition. Also, I feel like when I comment on posts of people needing advice, that also feels like a win!
My Joy
My Support System
My best friend Lana Mash has been at the other side of the phone for me to rant. I can talk to her about all my abscesses, send her photos, and she really encourages me to self-advocate. My partner Karl has also been my rock whilst also battling Stage 4 Cancer. They have both kept me sane at times I wanted to fly off the handle, as well as Mouse, my cat.
Want To Share Your Story?
We are always looking for more brave warriors willing to share their story too. If you’re interested, please click this link to submit your story and be featured like Kerrie. Thank you.