Person choosing comfortable clothing in a bright bedroom.

Companion guide

Someone you care about has HS

The essentials in two minutes, six things that genuinely help, five common assumptions — and where the line to medical care sits.

HS in two minutes

Five points that make the biggest difference before you read anything else.

  1. HS (hidradenitis suppurativa, also called acne inversa) is a chronic inflammatory skin condition.
  2. It can cause recurring painful lumps, abscesses, drainage, tunnels under the skin and scarring.
  3. HS is not caused by poor hygiene and it is not contagious.
  4. Symptoms and their impact vary substantially from person to person — and from week to week in the same person.
  5. The most reliable way to know what support someone wants is to ask them.

Appearance does not tell you how hard it is

You cannot read severity off someone’s skin. Pain, fatigue, drainage, restricted movement, embarrassment and the time treatment takes are often invisible from outside — including on days when someone seems “fine”.

Six things supporters most often get wrong

Each one ends with a question you can ask. That is deliberate: asking leads to better support than deciding in almost every case.

  • Pain can change plans quickly

    Someone may feel able to attend something in the morning and need to cancel later. HS symptoms can change, and sitting, walking or wearing certain clothes may become difficult.

    What you can ask “Do you want to change the plan, postpone it or do something easier?”

    Better to avoid Instead of “you should rest”: leave the decision with the person.

  • Drainage is part of HS for some people

    Some HS lesions drain fluid. This can affect clothing, bedding, intimacy and confidence — and it says nothing about how clean someone is.

    What you can ask “Is there anything practical I can do?”

  • Some body areas may be painful to touch

    HS often affects skin-fold areas such as the armpits, groin, buttocks and under the breasts. Physical contact may sometimes be uncomfortable there — which is not the same as not wanting closeness.

    What you can ask “Is there anywhere you’d rather I avoid touching today?”

  • Advice can become exhausting

    People living with chronic conditions are often sent diets, supplements, skincare products and treatment stories they did not ask for. Sometimes help with researching options is genuinely wanted — that is the person’s call, not yours.

    What you can ask “Do you want ideas, or would you rather I just listen?”

  • HS can affect confidence and relationships

    Research shows that HS can affect body image, relationships and sexual wellbeing. How much it does varies greatly between individuals — for some people it plays little part in daily life.

    What you can ask “You don’t have to explain anything you don’t want to. Tell me what feels comfortable.”

  • Support is personal

    One person may want help with practical tasks. Another may want privacy. Someone else may simply want their plans to remain flexible.

    What you can ask “What would actually be helpful for you right now?”

Ask instead of assuming

If you take one sentence away from these pages, take this one: ask instead of assuming. There is no form of support that fits everyone with HS — and the person in front of you knows best what they need right now.

Five assumptions to avoid

These five sentences are the ones people with HS hear most often. All five are wrong or harmful.

  1. “It must be caused by hygiene.”

    In fact HS is not caused by being dirty. Washing more or scrubbing does not prevent flares and can irritate the skin further.

  2. “I might catch it.”

    In fact HS itself is not contagious. It is not passed on by touch, shared towels, swimming pools or sex.

  3. “If I can’t see much, it cannot hurt much.”

    In fact You cannot tell how severe someone’s experience is by looking at their skin. Pain, fatigue, drainage, restricted movement and the sheer effort of treatment are often not visible from outside.

  4. “There must be one trigger they haven’t found yet.”

    In fact HS is complex, and what individuals experience as a trigger differs a great deal. There is no single trigger that everyone simply needs to find.

  5. “If I found a treatment online, they should try it.”

    In fact Treatment decisions belong between the person and their qualified healthcare professionals. You can offer to help research options — but only once that is wanted.

How can I help on a difficult day?

There is no universal flare routine. Ask what the person wants before stepping in.

Practical help

Concrete things that help some people on a difficult day — offer each of them rather than simply taking over.

  • Change plans or move them to another day
  • Take over errands
  • Bring supplies the person has asked for
  • Set up a more comfortable place to sit or rest
  • Take on household tasks that involve bending or lifting
  • Make sure there is undisturbed time for a dressing change

Emotional support

What people with HS most often describe as helpful is unspectacular.

  • Listen without immediately offering a solution
  • Take frustration seriously rather than talking it away
  • Avoid forced positivity (“stay positive” rarely helps)
  • Ask whether company or space would be better right now
  • Not take cancellations personally

Physical contact and wound care

This is where the clearest boundary in this guide sits.

  • Ask before touching, even in a long-standing relationship
  • During a dressing change, do only what the person explicitly asks for
  • Handing over supplies, holding a light, giving time — none of that is a medical procedure

Firm boundary: Do not touch, squeeze, drain, open or treat a lesion. If help with wound care is needed, follow the instructions of the person’s healthcare team — not this page, and not videos on the internet.

HS, intimacy and physical closeness

Pain, drainage, scarring, body image and lesions in sensitive areas can affect intimacy. Review articles describe that sexual wellbeing can be impaired in HS — how much is highly individual.

This section gives no advice about sex. It helps with one thing only: being able to talk about it.

Do not assume that HS means someone does want physical intimacy — and do not assume that it means they don’t.

Questions that help

  • “What feels comfortable today?”
  • “Are there areas you’d like me to avoid?”
  • “Do you want closeness without sexual activity?”
  • “Would you rather not discuss it right now?”

What feels good and what is welcome can change from day to day. HS does not change that basic principle.

When support starts to touch on medical questions

You do not need to become their clinician. If there is worry that symptoms are changing, or it is unclear where to seek medical care, use the site’s guide for that rather than trying to work out what is going on yourself.

When should someone with HS get medical help?

Do you live with HS yourself?

Instead of explaining everything again and again, you can build a private card: you choose what someone should understand, what helps you and what doesn’t — and share only that.

Create my support card

Evidence and editorial review

Last editorially reviewed: · Next review:

The description of the condition on these pages rests on the same basis as our scientifically researched and editorially reviewed disease overview. That HS is not contagious and is not caused by poor hygiene is well established.

That HS can affect relationships, body image and sexual wellbeing is also described in review articles — how much it does varies considerably between individuals.

On the burden experienced by partners there are so far only a few small cross-sectional studies. They show that such burden can occur. They do not support any statement about how common or how severe it is in general.

An association between greater social support and lower disease burden has been observed. Because those studies are observational, it does not follow that improving support changes the course of the condition.

Editorial policy and review process

What is Acne Inversa? The basics of the condition, scientifically researched, editorially reviewed, and readable without prior knowledge. When to get medical help The one page to fall back on whenever it is unclear whether something needs looking at. Patient stories Accounts from people living with HS — lived experience, not medical evidence. Ask the HS community Moderated questions and answers that keep lived experience and evidence clearly apart. Living with Acne Inversa Daily life, clothing, work, mental health — the overview of the practical pages.

Sources

  1. Hidradenitis suppurativa — overview, including that the condition is not contagious NHS (United Kingdom) · Link checked: 2026-08-03
  2. Hidradenitis suppurativa self-care — why washing and scrubbing do not prevent the condition American Academy of Dermatology · Link checked: 2026-08-03
  3. Hidradenitis suppurativa — how the condition arises from several interacting factors MedlinePlus Genetics, US National Library of Medicine · Link checked: 2026-08-03
  4. Sexual health in hidradenitis suppurativa — systematic reviews PubMed, US National Library of Medicine · Link checked: 2026-08-03
  5. Quality of life of partners — small cross-sectional studies, not a population estimate PubMed, US National Library of Medicine · Link checked: 2026-08-03
  6. Social support and quality of life in hidradenitis suppurativa — observational studies PubMed, US National Library of Medicine · Link checked: 2026-08-03
  7. Hidradenitis Suppurativa Foundation — patient organisations and materials, explicitly including relatives and friends HS Foundation · Link checked: 2026-08-03