# Diagnosed with Acne Inversa: What Matters in the First Weeks (and What Doesn’t)

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Language: en
Category: Daily Life
Published: 2026-05-21
Last updated: 2026-05-21
Author: Dr. rer. nat. Dennis Alexander Kwiatkowski (Biochemist, Scientific Writer and Pharma Expert)
Tags: Acne Inversa, Hidradenitis Suppurativa, HS, Daily Life, new diagnosis, first steps, patient orientation, early HS, diagnostic shock

> The early period after an HS diagnosis is overwhelming. This article separates what is genuinely important to do in the first weeks from what can wait — and what you do not need to decide in crisis.

Medical disclaimer: This website is for general educational information only and does not replace medical advice, diagnosis, or treatment. Please speak with qualified medical professionals about symptoms or treatment decisions.

## Article

A new diagnosis of hidradenitis suppurativa (HS) is rarely a relief, even when it ends years of not knowing what the lumps are. The clinical encounter that finally puts a name to the disease usually also includes the words “chronic” and “no cure,” and what follows is a period that most patients describe as overwhelming — equal parts grief, anger, late-night internet searching, and the dawning realization that this is going to be part of life from now on.

This article is for that period. It is not a comprehensive guide to HS — that takes longer to absorb than the first few weeks allow — and it is not a list of every possible intervention. It is an attempt to separate what is genuinely useful to do early from what can wait, and what decisions you do not need to make in crisis.

## Key takeaways

- The first emotional response to a chronic illness diagnosis is usually not a stable baseline. Do not make major life decisions in the first few weeks.
- The genuinely important early steps are: find the right kind of specialist (dermatologist with HS experience), start documenting your disease (photos, locations, timing), and learn enough about HS to be a useful participant in your own care.
- Most online HS content is either alarmist or overly reassuring. Use curated resources rather than open social media feeds in the early period.
- Most early-stage lifestyle interventions promoted online have weak evidence; the few that matter (smoking cessation, optimizing weight where relevant, friction reduction) are worth attention but do not need to be done in week one.
- Most patients eventually develop a functional relationship with the disease. The first weeks are not predictive of how you will feel a year from now.

## What a new HS diagnosis actually means

A few things worth being explicit about in the first weeks, because they often go unsaid in the clinical encounter:

**HS is chronic but it is not progressive in a linear sense.** A diagnosis of HS does not mean the disease will inevitably get worse year over year. Many patients live with stable or even improving disease for long periods. The natural history is variable.

**The Hurley stage is a useful but limited descriptor.** Hurley I is single or multiple lesions without sinus tracts or scarring. Hurley II is recurrent lesions with limited tracts. Hurley III is extensive interconnected tracts and scarring across an entire region. Your initial stage is a snapshot of where the disease is now, not a prediction of where it will be in five or ten years. With current treatment options, many patients hold at Hurley I–II long-term.

**HS is not an infectious disease.** You did not catch it. You cannot give it to anyone. It is not a hygiene problem, a moral failing, or a consequence of anything you did wrong. The persistent online and even occasional clinical messaging that frames HS as “cleanliness-related” is wrong and harmful.

**Treatment exists and is meaningfully better than it was a decade ago.** As recently as 2015, there was no biologic approved for HS. As of 2024, there are three (adalimumab, secukinumab, bimekizumab), with at least one oral systemic (povorcitinib) in late-stage development. Surgical options for individual tracts (deroofing) and for extensive regional disease (wide excision with various closures) have well-established outcomes. This is not a disease where “nothing can be done.”

**The diagnostic moment is not the disease.** The intensity of the feelings in the first weeks reflects the shock of a chronic illness diagnosis, not the experience of living with the disease over time. Patients who feel devastated in the first month often feel functional and even matter-of-fact about the disease a year later. This does not invalidate the early distress; it just means the early distress is not predictive.

## What is worth doing in the first weeks

A short list of actually useful early steps, in rough priority order.

### 1. Confirm the diagnosis and clinician fit

HS is a clinical diagnosis — no specific blood test or biopsy is required, and the diagnosis is made by an experienced clinician based on lesion morphology, location, and recurrence pattern. The diagnostic criteria are well established and the diagnosis is usually straightforward when an HS-experienced dermatologist sees the lesions.

What matters more than confirming the diagnosis itself is confirming that the clinician giving it is the right person to manage it going forward. HS care has moved substantially toward specialty management, and treatment by a dermatologist with significant HS experience tends to produce better outcomes than treatment by a general practitioner managing it as a recurrent abscess problem.

If your diagnosis came from your general practitioner or from a dermatologist without specific HS experience, asking for referral to an HS specialty centre is reasonable. In Germany, several university hospital dermatology departments run dedicated HS clinics; your general practitioner or current dermatologist can refer.

### 2. Start documenting

Take photographs of every lesion location. Note when each lesion started, when it drains, when it heals, when it returns. Track flare frequency on a calendar. Note what you were doing or where you were in your menstrual cycle when flares occurred.

This is the most useful thing you can do in the first weeks because it builds a baseline that no amount of remembered description can substitute for. Your dermatologist’s ability to track your disease over time, and your ability to make informed decisions about treatment, both depend on data that only you can collect.

A simple weekly log — five lines per week — is more useful than detailed records that you abandon. The aim is sustainability over completeness.

### 3. Learn enough to be a useful participant

Read enough about HS that you can have an informed conversation with your dermatologist about treatment options. This does not mean memorizing the molecular pathways of IL-17 inhibition; it means understanding what the broad treatment categories are (topical, oral antibiotics, biologics, surgery), roughly how they differ, and what kinds of questions are worth asking at appointments.

The companion articles in the Treatments section of this site are designed for this purpose. The European S2k guideline on HS treatment is also available as a freely accessible document for patients who want primary-source information.

What is worth being cautious about: open social media feeds about HS. The content is highly variable in accuracy, often overweighted toward severe cases (which are most visible online), and tends to amplify anxiety. Patient communities have real value — they reduce isolation and provide practical tips — but they are not a substitute for medical information and should not be the primary source for treatment decisions.

### 4. Set up the next dermatology visit deliberately

Most patients leave their initial diagnostic appointment with a vague follow-up plan and find themselves three months later without a clear next step. Better is to leave with:

- An explicit treatment plan to try in the meantime, however modest
- An explicit next appointment scheduled
- An explicit understanding of what would constitute “this is working” or “this is not working” by the next visit
- A way to reach the clinic between visits if something escalates

If the initial appointment did not produce this clarity, ask. It is reasonable to want it.

## What is worth doing in the first few months (but not week one)

A second tier of useful steps that benefit from being done early but do not need to happen in the first week.

**Address smoking, if you smoke.** Tobacco smoking is the strongest modifiable risk factor for HS severity. Quitting is associated with meaningful improvement in disease activity for many patients. This is genuinely important — but the first week after diagnosis is not when most people successfully quit smoking. Plan it deliberately, get support, and start in a window when you have the bandwidth.

**Consider weight management if relevant.** Higher BMI is associated with more severe HS in epidemiological data, and weight loss in patients with obesity is associated with disease improvement. This is a slower intervention than smoking cessation and warrants thoughtful planning rather than crash dieting, particularly because rapid weight loss can produce its own skin and health issues.

**Review hygiene routines and clothing.** Switching to gentle pH-balanced cleansers, reducing friction-prone clothing, and adopting an antiseptic wash (chlorhexidine 4% or benzoyl peroxide 4–5%) as part of the daily routine are all reasonable early changes. None is dramatic; together they make a modest difference for many patients.

**Address the obvious comorbidities.** Several conditions overlap with HS at elevated rates: metabolic syndrome, polycystic ovary syndrome (PCOS), inflammatory bowel disease, depression, anxiety. None of these are universal in HS, but a baseline screening conversation with your general practitioner about cardiovascular risk, lipid and glucose status, and mental health is appropriate within the first six to twelve months of diagnosis.

**Start the insurance/benefits conversation if relevant.** In Germany, severe HS may qualify for a recognized disability rating (Grad der Behinderung, GdB) with associated workplace and tax implications. For mild early disease this is rarely relevant, but for more severe cases it is worth knowing the option exists and discussing with your dermatologist when appropriate.

## What does not need urgent decision

A few categories of decision that can wait:

**Major treatment escalations.** Starting a biologic, scheduling surgery, or making significant treatment commitments do not need to happen in week one of diagnosis (with rare exceptions for severe active disease requiring urgent intervention). A few weeks of stable management while you and the dermatologist build a longitudinal plan are usually preferable to rapid decisions made in crisis.

**Career or relationship decisions.** HS will not require you to change careers, end relationships, or restructure your life in week one. Patients who make major life changes in the immediate post-diagnosis period sometimes regret them later. The disease is real and will require some accommodation; how much, and what kind, becomes clearer over the first six to twelve months of living with it.

**Whether to disclose to family, friends, or employer.** Disclosure decisions are individual and benefit from time. There is no obligation to tell anyone you do not want to tell, and there is no obligation to keep it private if you would prefer not to. Both extremes — total disclosure under emotional pressure and total concealment from everyone — tend to be regretted; a more measured approach develops naturally as you absorb the diagnosis.

**Whether to try every alternative treatment online.** The internet is full of “what cured my HS” content: zinc, turmeric, autoimmune protocol diets, brewer’s yeast elimination, particular supplements, particular skin products. The evidence base for most of these is anecdotal at best. Some are harmless; some are not. None of them are emergencies to start in the first week. They can be evaluated with appropriate skepticism over months rather than committed to in panic.

## A note on the emotional response

The acute emotional response to a chronic illness diagnosis is well characterized and has a recognizable trajectory. The first phase often includes shock, disbelief, anxiety about the future, grief for the body that was supposedly healthy, anger at the medical system for the delay, and isolation. These are normal responses to a difficult event, not signs of personal weakness.

The intensity usually decreases over weeks to months as you absorb the reality and develop functional ways of managing the disease. Most patients reach a stable baseline of “this is part of life and I have ways of dealing with it” within the first year, often sooner.

What is worth taking seriously: if the emotional response does not improve over the first few months, or if it is severe enough to interfere with work, relationships, or basic functioning, that is worth professional attention. Depression and anxiety are significantly more common in HS than in the general population — approximately 21% to 27% prevalence for depression versus 7% in matched controls — and they respond to treatment. A separate article in this series covers when to seek psychotherapy or psychiatric input.

If you are having thoughts of harming yourself or feel unable to keep yourself safe, contact a crisis line, your general practitioner, or an emergency service. In Germany, the Telefonseelsorge offers 24-hour support (0800 111 0 111 and 0800 111 0 222). This is appropriate help, and reaching for it is not an overreaction.

## What to tell your immediate circle, if you choose to

For patients who decide to tell partners, close family, or close friends in the early period, a short factual framing tends to work better than either elaborate explanation or apologetic minimization. Something like:

*“I’ve been diagnosed with hidradenitis suppurativa. It’s a chronic inflammatory skin condition that causes painful lumps in certain areas. It’s not infectious and not life-threatening, but it’s not curable and it’ll be part of my life going forward. I’m working with a dermatologist on treatment. I don’t have all the answers yet, but I wanted you to know.”*

Adapt as fits. The main principle is to provide enough information that the person you are telling knows what is happening and how to respond, without overloading them with detail you are still processing yourself.

## Frequently asked questions

**Should I get a second opinion?**

If you have any doubt about the diagnosis or the treatment plan, yes. The diagnosis itself is rarely the issue — HS is usually visually obvious to an experienced dermatologist — but the management plan can vary substantially between clinicians. A specialty-centre second opinion is reasonable if your initial appointment was with a generalist.

**How quickly will treatment help?**

This depends entirely on the treatment. Topical antiseptic washes may improve mild disease over weeks. Oral antibiotics for HS are usually trialled for 8 to 12 weeks before deciding effect. Biologics are formally assessed at 16 weeks. Surgery for individual tracts can produce immediate resolution of that tract, but does not modify the underlying disease drive. Patience with each intervention’s assessment window is part of HS management.

**Is there a cure on the horizon?**

There is no “cure” in development in the strict sense — no intervention that would permanently eliminate the underlying inflammatory tendency. There are several emerging targeted therapies (povorcitinib, IL-1 inhibitors, others) that may meaningfully expand the treatment options over the next few years, and the field is more active now than it has been in decades. The realistic framing is improved disease control and longer remission, not biological cure.

**Should I join a patient organization?**

Many patients find that connecting with HS patient organizations is valuable, both for practical information and for reduced isolation. The Hidradenitis Suppurativa Foundation (international) and various national organizations offer resources, peer support, and information. Joining is voluntary and can happen on your timeline.

**Will my children get HS?**

There is a genetic component to HS — first-degree relatives have an elevated risk of developing the disease — but the inheritance pattern is not simple Mendelian, and many people with HS have no affected relatives. Not all children of HS patients will develop the disease, and predicting individual risk is not reliable. This is a legitimate conversation to have with your dermatologist if you are family planning.

**Will I be able to live a normal life?**

Most people with HS work, have relationships, raise families, travel, exercise, and pursue ordinary lives. The disease imposes adaptations; it does not impose isolation or incapacity in most cases. The patients who do experience severe limitation are usually those with severe disease that has not yet been adequately treated — and even there, modern combined medical-surgical management is shifting the trajectory significantly.

## References

1. European S2k guideline on the treatment of hidradenitis suppurativa / acne inversa - Zouboulis CC et al.
2. North American clinical management guidelines for hidradenitis suppurativa - Alikhan A et al.
3. Newly diagnosed patient resources - Hidradenitis Suppurativa Foundation
4. Sex- and age-adjusted population analysis of prevalence estimates for hidradenitis suppurativa in the United States - JAMA Dermatology
5. HS-Patientennetzwerk and other regional patient organizations - Germany