Your phone buzzes. It’s the group chat, the lads making plans for the pub on Friday. A few years ago, you’d have been the first to reply. Now, you stare at the screen, a familiar, heavy feeling sinking in your gut. Your armpit is throbbing, your groin feels like it’s hosting a bonfire, and the sheer effort of showering and getting dressed feels like preparing to climb Everest. So you put your phone down and say nothing. By Friday, you’re just the bloke who “couldn’t be arsed.”
This is the quiet, creeping reality of social isolation and HS. It’s not a conscious decision; it’s a slow retreat. It’s an invisible wall built brick by brick, made of pain, shame, and exhaustion, until one day you look around and realise you’re on your own.
The Invisible Walls: Why We Withdraw
This isn’t just about feeling a bit anti-social. The isolation that comes with Hidradenitis Suppurativa is a defensive measure. We pull back because we feel we have to.
The reasons are both practical and mental. Practically, there’s the pain and fatigue that make a simple trip to the pub feel like a military operation. There are the complex dressing routines, the constant, low-level anxiety about a wound leaking, the fear of someone bumping into you and sending a jolt of agony through your body.
But the mental walls are thicker. It’s the fear of being a burden, the mate who always has to cancel, the one who can’t join in. It’s the exhaustion of putting on a brave face, of pretending you’re fine when you feel like you’re falling apart inside. It just becomes easier to say no. It becomes easier to be alone. The silence is painful, but you tell yourself it’s less painful than the alternative.
The Realisation: You’re Not the Only One Staring at the Rain
In your moments of deepest isolation, it’s easy to believe you’re the only person in the world going through this. But here’s the truth: you’re not. Think back to that thought experiment from my book, set in a packed football stadium. Even in a crowd of fifty thousand blokes, over a hundred of them could be fighting this same secret war.
The real disease isn’t just the HS; it’s the silence that surrounds it. We are a hidden tribe of warriors, scattered and isolated, each of us convinced we are fighting alone. The most powerful act of rebellion against this disease is to break that silence and find your tribe. This is a critical step in tackling social isolation with HS.
Tearing Down the Walls: The First Small Steps
You don’t have to demolish the wall in one go. You just need to pull out a single brick.
- Tell One Person: You don’t need to announce it to the world. Just pick one person—your best mate, your brother, your dad—and tell them the truth. Not just the name of the disease, but how it really makes you feel. Saying “I’m struggling, mate” is one of the bravest things you can do.
- Find Your Digital Tribe: The internet can be a cesspit, but for people like us, it can be a proper lifeline. There are incredible online communities filled with people who just get it. You don’t have to explain anything. The Hidradenitis Suppurativa Foundation has forums, and there are countless UK-based Facebook groups. Just lurking and reading other people’s stories can make you feel less alone.
- Start Small:Â Maybe you can’t do a full night at the pub. But could you manage one pint? Could you meet a mate for a coffee for an hour? Redefine what “going out” means for you. Small victories are still victories.
(The fear of talking about this is huge, I know. I’ve written about it in more detail in my post, Why Talking About HS is So Damn Hard.)
You are not a burden. You are a warrior in a tough fight. Let people in to help you carry the load. Have you felt this isolation? What was the first step you took to break out of it? Let’s talk in the comments.