Alana’s Story: “My scars are only skin deep”
Get To Know… Alana
Name: Alana
Age: 39
Location: Aberdeen, Scotland
Battling HS for: More than 20 years
Current Stage: Stage 2
“HS has taught me to learn to accept my body for what it is, on good and bad days. Some days you suffer with so much pain, some days you don’t. But my scars are only skin deep — they do not define who I am, because I won’t let them anymore.”
Warning – Graphic Images contained on this page.
What Makes Me Tick
I don’t have many hobbies or interests beyond watching the soaps every night. I live with chronic anxiety, so I very rarely go out alone. I do have a job I love — only two half-days a week, but it gives me some “normal.” Apart from that my life is pretty quiet, and I choose it that way.
What makes me happy: my dogs — two Jack Russell–chihuahua crosses, Gizmo and Gumbo — my son (when he’s not bugging me), and crisps. Crisps are life. I am unhealthily addicted to them.
For the future, I’d like to see more research and support put into HS. We seem to be brushed off with antibiotics constantly, or left to fend for ourselves. I am lucky that through my job I have support from nurses, but some people don’t. We are all human. We all suffer in different ways — why should we be at the bottom of the list when we can suffer just as much as anyone else?
The Beginning: Brushed Off, Then Fighting for a Name
I’ve had HS from my teens — about 16. It was brushed off as weight because my thighs rubbed together. I left it that way for a long time, longer than I should have, but when you’re dismissed you think, fine, I don’t need anything then.
I can’t remember my exact diagnosis date — early to mid-20s — and that was only after I did my own research online. I went to my GP; they had no clue, so I got a referral to dermatology. I remember going in and telling them: I have HS, I did my own research, showed them my skin, and asked what they could do.
I was given long-term antibiotics, which I tried, but they didn’t agree with me so I stopped — and then nothing. They kept bringing up immunotherapy. I had no clue what it involved. I thought that was what cancer patients get, that I’d lose my hospital job, that I wouldn’t be allowed out anywhere — so I put it off and off. Now my HS is possibly at Stage 3, which I could have prevented had I known more back in my 20s.
A ‘Bad’ Day in the Life: Dressings and Pushing Through
A bad day for me is when I have dressings stuck all over my body. I refuse to let HS keep running my life. I’m sore, uncomfortable, and sometimes I feel like I smell like a sewage drain — but because I’ve had it so long, I’ll dress the ones I need to and push through the day. Exhausting, yeah, but it saves my sanity, and that is already a fragile wee thing.
My Reality: In Images
The Unseen Battle: My Scars Are Mine
Nowadays I try my hardest not to let my HS get me down. It’s frustrating when you wake up and bang — there’s another cyst out of nowhere. I don’t show people my skin, but I will show other HS people my skin if it helps them.
I am who I am, and it’s taken a long, long time not to let my skin get me down — especially when I’ve had an ex-partner who abused me (domestic violence) and used my skin as another way to bring me down. Or other partners who thought my scars were disgusting and wanted me to cover up. My scars are MY SCARS. No one can take that and use it against me. I am me, with HS and everything else on top. If people don’t like that, then bog off.
Finding What Works: Sudocream
Sudocream — all day of the week.
A Moment of Strength: Diagnosed — Not “Just Fat”
When I was finally diagnosed, and it wasn’t just because I was fat or overweight.
I also won when I started to stop caring what other people thought and learned to accept me for me.
The Message
Research as much as you can, even though it’s limited. The more you know, the more you can fight for yourself. Push, stand, and fight for yourself, because we get dismissed so often by healthcare professionals.
Dressings, soaps, etc. can be given on prescription — don’t spend your own money buying these things.
And learn to love yourself, or like yourself. Scars are skin deep — they don’t need to define who you are.
One Day at a Time
I lost my partner nearly three years ago. He never understood my skin condition either, and some people just never will.
I know now that I don’t have to justify myself to anyone. I do have relief that I choose not to be with anyone else now since my partner died — I don’t have to explain what my scars are or why I have them.
My scars are part of me, but they aren’t the whole of me. Same as a previous domestic abuse relationship — that doesn’t define me as a person.
I take every day as it comes. It may not be exciting or filled with lots of things, but what makes me happy is that I’m content in my life. One day at a time — that’s all it takes.
My Joy
Want to share your story?
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