You’ve been quiet about the HS.
Not because you’re soft. Because it’s awkward to explain a disease that doesn’t look like a tidy “rash,” and because half the time you’re already knackered from the flare itself. Dressings, waiting rooms, clothes like sandpaper — last thing you fancy is a TED Talk for your mates or your mum. So you say “skin thing” and change the subject.
If that’s you — especially blokes carrying it like a private war — this is for when you do want to say something, without a confession booth. Not medical or legal advice. Lived experience plus a few plain UK facts. Your call who knows.
What HS is in one breath (and what it isn’t)
You don’t need a seminar. You need a sentence you can say out loud.
Something like: I’ve got hidradenitis suppurativa — HS. It’s a painful, long-term skin condition. It can cause abscesses, discharge and scarring, often in places like the armpits, groin, bottom or under the breasts. It’s not infectious, and it’s not because I don’t wash.
That last bit matters. NHS says hidradenitis suppurativa (HS) isn’t infectious and isn’t linked to poor hygiene. The British Association of Dermatologists says HS cannot be passed on to another person, and poor hygiene does not cause it. Guy’s and St Thomas’ suggest keeping an explanation short and clear — that can help clear up myths, including ideas that HS is contagious or due to poor personal hygiene.
You can stop there. You don’t owe anyone a tour of every dressing or every scar.
If they want more, point them at a plain overview — What is HS? — rather than you becoming Wikipedia with a Yorkshire accent.
Who, when, and how much — your call
Official pages won’t write a law for your living room: who you tell, when, and how much is up to you. That’s editorial, not a quote from NHS or BAD. I’m not inventing a mates-and-family “duty to disclose.”
Some people tell one mate and leave it. Some tell family in stages. Some stay quiet for years — and that’s not a moral failing.
GSTT notes that living with HS can be hard to explain, and that avoiding talking about it can add stress for you and confusion for others — without saying you must tell everyone. If the secrecy is eating you, that stress is real. If telling feels worse right now, that can be real too. Pick the lesser bloody headache.
This is not a workplace disclosure guide. We’ve already done the work-angle post. This one is mates and family.
Practise it with someone safe first
NHS hospital guidance from Guy’s and St Thomas’ covers communicating about HS with people around you, including friends and partners. GSTT suggests thinking of ways to explain HS to people you feel comfortable with, and practising what you’ll say.
Sounds soft until you try it — first time out, the words can come out sideways. Practise with someone who already gets you. You’re finding a version you can live with when you’re knackered, not rehearsing a performance.
Mates vs family (different rooms, same disease)
Mates often need the myth-bust more than the medical detail. One breath. Not contagious. Not hygiene. Maybe: Some weeks I’m slower / I might cancel / I’m not being weird, I’m managing a flare. Then move on.
Family can be messier — love and history in the same pot. “Have you tried…” Energy. Fear. Or they already clocked something was wrong. You still don’t owe a clinic letter. Say what’s needed for practical life without every private detail.
If you’re a man who’s been silent, you’re not alone — see HS and the gender gap for men if that lands. This is not me kicking the door in. Quiet readers stay quiet until they want the words.
Partners — only if it feels right (sidebar)
With a partner, or thinking about telling a new one, that’s another lane. GSTT says people with long-term skin conditions can form and keep close relationships, and suggests being open with a partner about how HS affects you — including adjusting intimacy for comfort — if that feels right.
You don’t have to centre smell, leakage, or sex as required talking points on day one. Keep it practical and kind. Separate piece if that’s the conversation: telling a new partner about HS. This post stays on mates and family as the spine.
The myths that make silence worse
A short script fights the myths that keep people quiet:
- “Is it catching?” — No. NHS: HS isn’t infectious. BAD: it cannot be passed on to another person. (NHS · BAD)
- “Is it because you don’t wash?” — No. NHS: not linked to poor hygiene. BAD: poor hygiene does not cause it.
- “Is it just boils?” — No. It’s chronic — abscesses, scarring, dressings, life planned around flares.
You don’t need to win a debate. One clear sentence, then the nerve to stop when you’ve said enough.
For talking tips with people around you, GSTT’s Communication and relationships page is worth a look.
If the quiet is getting heavy
NHS notes HS can have a significant impact on everyday life; living with pain, discomfort and regular dressings can affect quality of life and lead to depression. NHS: speak to a GP if you’re finding it difficult to cope. BAD notes HS can contribute to depression and anxiety; if you feel worried, anxious, embarrassed or unhappy, speak with a healthcare professional such as your GP.
GSTT: see a GP or tell a health professional if you feel depressed or have thoughts that your life is not worth living; go to A&E immediately if you think you might act on those thoughts.
Talking to mates helps some people. It doesn’t replace proper support when you’re struggling.
Soft close
You don’t have to become the HS awareness ambassador for your postcode. You might just need one person who knows why you’re knackered, why you cancelled, or why you’re protective of that bit of your life.
If you want company from people who already get it — without performing for a room that doesn’t — Living Life With HS is a patient-led community built around Support, Awareness and Self-Advocacy. Soft invite: have a look at the site, the Stories, or the community routes that fit you. If you’ve got a story of your own and you ever want it heard properly, there’s a Your Stories form when you’re ready — no pressure.
Been quiet? Fair enough. When you speak, keep it short, keep it true, and keep the rest for the people who’ve earned it.
Disclaimer: Lived experience and general UK public information — not medical or legal advice. For personal health worries, speak to a GP or appropriate clinician.