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Complete Guide

Living With Hidradenitis Suppurativa

HS affects every part of your life, your body, your relationships, your work, your mental health. This guide addresses all of it, with compassion and practical advice.

Authoritative Resource

Living With HS: Quick-Start Guide

Our most comprehensive overview of daily life with HS, covering flare management, work, relationships, and mental health in one place.

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Living with hidradenitis suppurativa means navigating a condition that is painful, unpredictable, and often invisible to the outside world. It means managing wounds while going to work, explaining absences to employers, navigating intimacy with a partner, and finding the energy to advocate for yourself in a medical system that often does not understand HS.

This guide is a starting point for every aspect of life with HS. Each section links to deeper resources so you can explore the areas most relevant to your situation.

You are more than your diagnosis

HS is a part of your life, but it does not define you. Many people with HS are living full, meaningful lives, working, loving, traveling, creating, and thriving. The resources on this site are here to help you do the same.

Every Area of Life With HS

Medical Management

Finding the right treatment team and staying on top of your care

HS Flare Treatment GuideFind an HS Specialist

Nutrition & Diet

Eating to reduce inflammation and identify food triggers

HS Diet & Inflammation7-Day Meal Plan

Mental Health

Managing the emotional and psychological impact of HS

Mental Health ResourcesHS Support Groups

Relationships & Intimacy

Navigating dating, relationships, and intimacy with HS

Intimacy & Relationships GuideRelationships & HS Pillar Guide

Work & Social Life

Managing HS at work and in social situations

Workplace StrategiesLiving With HS Guide

Wound Care

Daily wound management and hygiene routines

Wound Care ProtocolsHS Odor Control

Practical Daily Life Strategies

Morning Routine

  • •Gentle cleansing with antibacterial wash on affected areas
  • •Change dressings before getting dressed
  • •Apply zinc barrier cream to prevent friction
  • •Choose loose, breathable clothing for the day

At Work

  • •Keep a small hygiene kit in your desk or bag
  • •Request ergonomic accommodations if needed (standing desk, cushioned seating)
  • •Plan for medical appointments without guilt
  • •Know your rights under disability accommodation laws

Managing Flares

  • •Have a flare kit ready: warm compress, NSAIDs, clean dressings, antibacterial wash
  • •Use the Flare Tracker to identify patterns and triggers
  • •Contact your dermatologist early, intralesional injections work best in the first 24–48 hours
  • •Give yourself permission to rest

Sleep

  • •Use silk or satin pillowcases to reduce friction
  • •Elevate affected areas with pillows
  • •Take pain medication 30–60 minutes before bed if needed
  • •Keep the bedroom cool to reduce sweating

Advocating for Yourself

One of the most important skills for living with HS is self-advocacy, the ability to communicate your needs clearly to doctors, employers, family members, and others. HS is frequently dismissed or misunderstood, and patients who advocate effectively for themselves get better care.

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A printable list of the most important questions to ask at your next dermatology appointment, covering diagnosis, treatment options, biologics, and surgery.

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Frequently Asked Questions

Can you live a normal life with hidradenitis suppurativa?
Yes, many people with HS lead full, active, and fulfilling lives. It requires adaptation, the right medical treatment, and building a support system, but HS does not have to define you. With proper management, many patients achieve significant reduction in flare frequency and severity. The key is finding the right combination of medical treatment, lifestyle strategies, and emotional support.
Does HS get worse with age?
HS follows different patterns in different people. For many patients, disease activity peaks in their 20s–40s and then naturally decreases after menopause (in women) or in later adulthood. However, without treatment, HS can progress and cause permanent scarring at any age. Early and consistent treatment is the best way to prevent long-term disease progression.
Can HS go into remission?
Yes. Some HS patients achieve remission, a period of minimal or no disease activity , particularly with biologic therapy, surgical intervention, or significant lifestyle changes. Remission is not always permanent, but it is achievable for many patients. Maintaining remission typically requires ongoing medical management.
How do I tell my employer about HS?
You are not legally required to disclose your specific diagnosis to your employer. You can simply say you have a chronic medical condition that may occasionally require medical appointments or accommodations. If you need specific accommodations (remote work during flares, modified duties, accessible restrooms), you may need to provide medical documentation. Consult an employment attorney or HR professional if you face discrimination.
How does HS affect mental health?
HS has a profound impact on mental health. Studies show that HS patients have significantly higher rates of depression (up to 40%), anxiety, and reduced quality of life compared to the general population and even compared to patients with other chronic skin conditions. The pain, unpredictability, social stigma, and impact on relationships all contribute. Mental health support should be considered an essential part of HS care.
What are the best clothing choices for HS?
Loose-fitting, breathable fabrics are best for HS. Natural fibers like cotton and bamboo are gentle on the skin. Moisture-wicking athletic fabrics can help in active situations. Avoid tight waistbands, underwire bras, and synthetic fabrics that trap heat and moisture. Seamless underwear reduces groin friction. Dark-colored clothing can help conceal drainage stains.

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Medical References

  1. [1]Jemec GBE. Hidradenitis suppurativa. N Engl J Med. 2012;366(2):158-164. PubMed
  2. [2]Kimball AB, et al. Burden of hidradenitis suppurativa: a systematic literature review of patient reported outcomes. Dermatol Ther. 2024;14(1):207-228. PubMed
  3. [3]Alikhan A, et al. North American clinical management guidelines for hidradenitis suppurativa. J Am Acad Dermatol. 2019;81(1):76-90. PubMed