Taylor’s Story: Turning Pain Into Purpose
Get to know… Taylor
Name: Taylor
Age: 41
Location: Massachusetts, USA
Battling HS For: More than 20 years
Current Stage: Stage 3 / Varies
Socials: Facebook | Instagram – @Fungi_to_follow | TikTok – @ThatdudewithHS
**Warning – Graphic Images contained on this page.
A Note from Gaz (A Special Introduction)
Before you read Taylor’s incredible story, I want to add a personal note. From the start, my mission for this platform has been to build a resource for the HS community in the UK. However, I have always known that this is a global fight.
I first connected with Taylor when he became an early reader for my HS book around a year ago. His insight, honesty, and incredible work as an advocate in the HS community have been a profound source of inspiration for me. He is not just an advocate; he is a dear friend. Chatting with him regularly has brought balance to my life which I searched a long time for. Our bond is so special, it has to be shared in the hope that it will help you find the courage to reach out and find someone to confide in, like I have in Taylor.
While I have struggled to find men in the UK to share their story, Taylor stepped up without hesitation. It is a powerful reminder that our war with this disease knows no borders. So, I have made the decision to feature his story as our first “International Warrior.” He represents the millions fighting this battle across America, and I am honoured to have him here. Thank you brother man!
The Beginning: A Sentence, Not an Answer
My diagnosis came during my teenage years, at a time when I was already struggling to understand my body and my sense of self. I felt ashamed of what was happening to me and disgusted by the painful, unpredictable symptoms I couldn’t control. Instead of feeling relief when I finally learned that it had a name, hearing ‘Hidradenitis Suppurativa’ felt more like a sentence than an answer. I was told it was considered an ‘orphan disease,’ something so uncommon and so poorly understood that many medical professionals knew very little about it. At that age, hearing that didn’t give me hope; it made me feel completely hopeless.
The Unseen Battle: The War on Mental Health
HS has had a profound impact on both my mental health and my confidence. For a long time, it made me feel ashamed of my body and disconnected from it, like I was living inside something I couldn’t trust. Beyond the physical symptoms, HS created an invisible emotional burden that was often just as heavy. It affected the way I moved through relationships, work, and daily life. HS takes a toll on your body and your mind, and the two are deeply connected. That’s one of the hardest truths about HS; it doesn’t just impact your skin, it impacts the way you carry yourself through the world.
My Reality: In Images
My Armoury: The Things That Keep Me Going
What makes me happy is the love I share with my dog Macey, my partner, my family, and the community around me. I treasure the quiet, in-between moments in life, the ones that feel soft and fleeting and somehow almost perfect. I’m happiest when I’m surrounded by music, good food, something cooking in the kitchen, and when I’m able to pour love and purpose into the work I do for the HS community.
What makes me tick is connection, creativity, and purpose. I’m deeply passionate about hospitality and creating meaningful experiences for people. Outside of work, I’m really into things like craft cocktails, D&D, writing, mushrooms and natural wellness, and HS advocacy. I’ve found a real passion in using my own experiences to educate, support others, and turn something painful into something meaningful.
My Joy
Finding a Win: The Clinical Trial & Community
One of the moments I felt like I truly ‘won’ against HS was participating in the CAR T-cell clinical trial at Brigham and Women’s last year. Being part of something so groundbreaking gave me a firsthand look at what is happening on the front lines of medical treatment and research, and for the first time in a long time, it gave me real hope for the future of HS care.
Another huge part of that sense of victory has come from finding community. Meeting other patients, advocates, and people who understand the reality of this disease has given me a sense of belonging and emotional support that I never had in the early years. Knowing that others are fighting just as hard as I am has made me feel less alone, and that in itself has been one of the greatest wins of all.
My Goal for the Future
One of my biggest goals for the future is to help bring more visibility to HS and the evolving treatment options available to patients. My own journey, including surgeries and participation in a clinical trial, has shown me how important research, innovation, and patient advocacy truly are, and I want to use my voice to help others feel informed, represented, and hopeful about what’s possible
A Shoutout to the Community
I’d love to give a heartfelt shoutout to Gaz (Gareth), who was the first person I ever truly connected with about HS on a deeply personal level. Reading his book and speaking with him over time helped me feel seen and understood in a way I hadn’t experienced before. His compassion, honesty, and the incredible work he has done and continues to do for the HS community have been such a profound source of inspiration, and I’m truly grateful to call him not just an advocate, but a dear friend.
*No money exchanged hands, I promise, sincerely, Gaz.
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 Taylor. Thank you.