Lauren’s Story: The Power of Knowledge

Get To Know… Loz (Lauren)

Age: 29

Location: Northamptonshire.

Battling HS For: 6-10 years

Current Stage: Stage 3

HS Has Taught Me…

The NHS have no clue and are shocking with treatments and diagnosis. The biggest lesson HS has taught me is to listen to my body and take time.

It started off quietly—just a few painful lumps in the folds of my skin. At first, I told myself they were nothing more than boils or irritated follicles. I adapted. I washed, applied creams, changed clothing to reduce friction, hoping they’d heal in time. But the reality hit: the antibiotics and topical creams didn’t work. Sitting in my GP’s waiting room, I remember the hope I had when I was handed yet another antibiotic script. And then the quiet despair when weeks passed, and nothing changed.

The turning point came when I began digging into my symptoms and discovered Hidradenitis Suppurativa. I saw myself in that description. I summoned the courage to say to my GP: “I believe this might be HS. Can you refer me to dermatology?” My voice felt both hopeful and shaky. Six long months of waiting followed.

When I finally saw the dermatologist, the diagnosis came: HS confirmed. In that moment, a strange mixture of emotions washed over me. Relief—because I finally had a name for the pain. Validation—for all the times I felt dismissed or told it was ‘just boils.’ But also, fear and sadness. In the aftermath, I grieved a little for the person I was before this. But I also felt a spark of determination—I now knew I had to become my own advocate. The diagnosis didn’t bring an instant cure, but it brought knowledge. And knowledge—though heavy—is a powerful thing.

My Reality in Images

I wake up to pain. It isn’t just ‘discomfort’ – it’s an ache that tells me another flare has begun. I change clothes twice already this morning; I’m anxious someone will notice. The odor is there too, faint but real, a shame I can’t fully mask. Emotionally, I feel drained. I withdraw. I cancel social plans because I don’t want to explain this again. The pain that others don’t see, but still controls so much, breeds loneliness. Before sleep, I sometimes cry. A grief for the body I once had – the one that didn’t groan under movement, didn’t leak, didn’t demand so many changes. I’m fighting a condition that feels lonely, that feels misunderstood.

Finding What Works: The Non-Medical Armoury

Currently, I’ve adopted a practical routine of care that supports my body in more than just the physical sense: I use witch-hazel gel on affected areas to soothe irritation, and a mint & tea-tree shower gel for a cooling, gentle cleanse. I make a conscious decision not to wear bras or underwear letting skin folds breathe and minimise pressure wherever possible. On the diet front I’ve cut out red meat entirely and significantly lowered my sugar intake. While none of these changes promise a cure, together they give me more control over my day-to-day experience.

My Moment of Strength: Reclaiming Myself

I may not feel strong every day, but I carry hope—grounded in my decision to rise above just being a patient of HS and become an advocate for others. I remember reaching out, sharing what I’ve learned, speaking words of comfort to someone else. In doing that, I reclaimed a piece of myself: someone not defined by boils, by pain, by isolation—but someone who can see those parts of my story, and say: ‘You’re not alone.’ That spark of hope, that intent to support others, is where I found my win.

My Joy

“I am here for you! I’ve got you.”

HS diagnosis journey in the UK