Nat’s Story: “Pain Doesn’t Make You Weak”

The Beginning: A 20-Year Journey to a Name

My HS journey began long before I had a name for it. I was just 15 years old when my first lesion appeared back in 2005. At the time it was dismissed as a ‘one-off’—a boil that would ‘clear up on its own.’ Except it didn’t. The lesions kept coming back over the years, appearing in different places, always painful and always disruptive. During that time, I was studying musical theatre, training hard and using my body every day, while quietly dealing with a pain I didn’t yet have the language to explain.

What followed were years of GP appointments where the focus was on changing me: lose weight, stop smoking, reduce stress. It took ten long years before I was finally diagnosed with Hidradenitis Suppurativa in 2015. While the diagnosis brought relief in finally being believed, it also marked the start of a long road of trial and error. Since then, I’ve navigated multiple treatments, started biologics in January 2025 that unfortunately didn’t work for me, and most recently made the decision to take part in a clinical trial. It’s been a journey defined by persistence, patience, and learning to keep going even when progress feels slow.

A ‘Bad’ Day in the Life

On a bad HS day, the difficulty starts before I’ve even got out of bed. I usually wake up already tired, doing a mental scan to work out what hurts and what’s flaring. Everyday things like getting dressed, walking, or sitting suddenly require thought and negotiation. Pain becomes a background noise that follows me throughout the day.

Bad days often mean cancelled plans and the emotional labour of pretending you’re okay when you’re not. On those days, humour becomes a coping mechanism, not because it makes the pain disappear, but because it helps me get through it without losing myself completely.

Finding What Works: The Non-Medical Armoury

Outside of medication, a lot of managing HS has come down to practical and emotional adjustments. Comfort-first clothing has made a huge difference. Learning when to rest without guilt has been one of the hardest but most important lessons—listening to my body rather than pushing through at all costs.

Humour also plays a big role. Being able to laugh, even on tough days, helps take some of the power away from the condition. Creativity, whether through writing or storytelling, gives me an outlet to process what I’m experiencing, and connecting with others who truly understand HS has been invaluable. Feeling seen and understood can be just as important as any physical coping strategy.

A Moment of Strength: Choosing to Fight Back

Winning against HS hasn’t been about curing it or being flare-free – it’s been about choosing not to give up on myself. Making the decision to start biologics, and later to take part in a clinical trial, felt like moments of real strength because they represented hope after years of uncertainty. Even when treatments haven’t worked as hoped, choosing to keep trying has felt empowering. Those moments remind me that strength isn’t loud or dramatic—sometimes it’s simply persistence.

My Joy

My Mission: Joining the Campaign

My goal is to use my lived experience with HS to create real change: better awareness, better care, and more honest conversations, while also building a life that isn’t defined by my illness but shaped by resilience, purpose, and compassion.

From Gareth, Founder of LLWHS: It is this passion, determination, and lived experience that makes Nat a vital part of this campaign. I am proud to announce that she has joined me as a core member of the Living Life With HS team. Together, we are going to make a difference. Stand by…

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