Living with HS in the UK: The Ultimate Survival Guide for 2026

I was sat at my kitchen table this morning, staring at a purple hoodie with the words “It’s a bad flare day” printed across the chest. It’s a simple sentence, but if you are living with HS in the UK, you know it’s a heavy one. It’s the sentence we whisper to ourselves when we have to pull a sickie, or when we’re stood in the shower crying because the water feels like needles.

For twenty years, I was a lone warrior. I thought I was the only one. But 2026 is the year that changes. I am proud to say that Living Life With HS is now officially a Community Interest Company (CIC). We have a board, a business bank account, and a massive goal: to build a “wall of evidence” that proves how many of us are being failed by the system. We need that evidence to secure the grants and funding that will finally drag this disease into the spotlight. But to do that, we need to make sure you are surviving the day-to-day first.

Can I claim PIP for Hidradenitis Suppurativa? – The Financial Battle

One of the most frequent questions I get asked is, “Can I actually get disability benefits for HS in the UK?” The answer is a resounding yes, but the DWP won’t make it easy. They see “skin condition” on a form and their default setting is to fob you off.

When I was first applying, I constantly asked myself, “How do I prove that I can’t walk because of an abscess in my groin?” or “How do I explain the mental exhaustion of chronic pain?” I was rejected at first, but I fought them all the way to a tribunal—and I won. If you are struggling with the “HS Tax”—the cost of missed work and specialist supplies—you need to read our step-by-step guide to claiming PIP for HS AND take an even deeper dive by viewing our benefits page. Don’t let the bureaucrats win; the support is there if you know how to demand it.

What is the best treatment for HS in the UK?” – The Practical Armour

When you’re in the middle of a flare, you aren’t thinking about policy; you’re thinking, “What can I put on this to make the pain stop?” and “How do I stop this from leaking through my clothes?”

I’ve spent far too much money testing every cream and bandage under the sun. My biggest realisation was that the high-street stuff is largely useless for us. You need proper armour. For me, that means specialist silicone foam dressings that stay put and don’t rip your skin to shreds when you remove them. We’ve put together a full page of resources on the main site which you may also find useful; click here.

You also have to tackle the “smell” and the secondary infections. I used to wonder, “Is there a soap that actually helps?” The answer is to manage the bacterial load without being aggressive. Switching to a dedicated antiseptic wash for HS like Octenisan or Hibiscrub was a turning point for my “peacetime” routine. These aren’t cures, but they are the tools that allow us to function.

Is there an HS support group near me? – Building the Tribe

Isolation is the real killer with this disease. We hide away because we’re embarrassed, or because we’re tired of the “H-what?” reaction from doctors. I remember thinking, “I just want to talk to one person who actually gets it.

Finding that tribe changed my life. Now, as a CIC, our mission is to make sure you find yours. We are building a community to be recognised as a top resource for HS support in the UK. We need your voice to make our case for funding stronger.

How you can help right now:

Shout About What We’re Doing From The Rooftops! Please share these blogs, other warrior stories and news of this mission to raise awareness everywhere! Especially on Social Media – Facebook, Instagram, TikTok to name a few. There are an estimated 500,000 people living life with HS across the UK & Ireland – we need to find them and show them that they too are not alone and your role in this is vital, please.

Support the Merch: We recently launched our new warrior merch—including the “It’s a bad flare day” hoodies. “Wear your resilience” and “Cut the HS silence” are the messages we are promoting. Let’s get the public talking, that’s our goal. Plus, they’re really good quality and every penny goes back into the CIC to further fund our advocacy work.

Join the WhatsApp Community: This is our most active hub. It’s a safe, private space to talk to people who actually “get it.” The community is growing day by day and people are reporting just how useful this resource is. There is nothing else like it for people living life with HS in the UK & Ireland. Join the HS Support Group today.

Sign up for the Newsletter: This is vital. It helps us track our reach and ensures you never miss a guide or a mission update. Want to know about research or clinical trials taking place near you? Stay in the loop, sign up here.


The rules of living with HS in the UK are changing. We are moving from being “case files” to being a community of survivors. Pull up a seat at the campfire—we’ve got work to do.

What is the single biggest hurdle you’re facing with your HS care right now? Is it the GP, the DWP, or just the daily pain? Tell me in the comments—your answers are the data I need to go out there and fight for our funding.