HS and Mental Health: You Are Not Alone
Depression, anxiety, and social isolation are among the most common and least-discussed consequences of living with hidradenitis suppurativa. This guide explores the psychological impact of HS and the evidence-based strategies that help.
If you are in crisis: Call or text 988 (Suicide and Crisis Lifeline, US) or go to your nearest emergency room. 988lifeline.org
Medical Disclaimer: This article is for educational purposes only and does not replace professional mental health care. If you are experiencing depression, anxiety, or thoughts of self-harm, please seek support from a qualified mental health professional. Read full disclaimer.
Hidradenitis suppurativa is not just a skin condition. It is a chronic, painful, and often disfiguring disease that affects every dimension of a person's life - their relationships, their work, their sense of self, and their mental health. Research consistently shows that HS has one of the highest psychological burdens of any dermatological condition.
A 2013 study published in the Journal of the European Academy of Dermatology and Venereology found that 43% of HS patients met criteria for clinical depression - a rate significantly higher than the general population and higher than patients with psoriasis, eczema, or acne.[2] Anxiety disorders are similarly prevalent.
Understanding the psychological impact of HS, recognizing when professional support is needed, and knowing what evidence-based strategies help are essential parts of comprehensive HS management. The impact on intimacy and relationships is one of the most significant contributors to psychological distress in HS patients.
How HS Affects Mental Health
The psychological impact of HS operates through multiple interconnected pathways. Understanding these mechanisms can help patients and caregivers recognize that mental health struggles are a legitimate, physiologically grounded consequence of the disease - not a personal weakness.
Chronic Pain and Sleep Disruption
Persistent pain from HS lesions disrupts sleep, reduces physical activity, and depletes the psychological resources needed to cope with daily challenges. Chronic pain and depression share overlapping neurological pathways, making each condition worse.
Shame, Stigma, and Body Image
HS lesions in intimate body areas - the groin, underarms, buttocks, and breasts - cause profound shame and body image distress. Many patients describe feeling 'disgusting' or 'unlovable.' Drainage, odor, and visible scarring intensify these feelings and can lead to social withdrawal and avoidance of medical care.
Social Isolation and Relationship Impact
Fear of odor, visible lesions, or drainage causes many HS patients to avoid social situations, cancel plans, and withdraw from relationships. Intimacy is particularly affected. Research shows that HS significantly impacts sexual function and relationship satisfaction.
Occupational and Financial Stress
HS flares can make it impossible to sit, walk, or wear work-appropriate clothing. Many patients miss work during flares, face discrimination, or are unable to maintain employment. The financial burden of treatment, combined with reduced earning capacity, adds significant stress.
Systemic Inflammation and Brain Chemistry
Emerging research suggests that the same inflammatory cytokines (TNF-alpha, IL-1, IL-6) that drive HS lesion formation may directly affect brain chemistry and contribute to depression. This means that treating HS inflammation with biologics may improve mood independently of the psychological benefits of disease control.
Recognizing When You Need Support
Many HS patients normalize their psychological distress as "just part of having HS." While adjustment to chronic illness is normal, clinical depression and anxiety require professional treatment. The following signs indicate that professional mental health support is warranted:
Signs of Depression
- -Persistent low mood lasting more than 2 weeks
- -Loss of interest in activities you used to enjoy
- -Significant changes in sleep or appetite
- -Feelings of worthlessness or excessive guilt
- -Difficulty concentrating or making decisions
- -Thoughts of death or suicide
- -Withdrawing from friends and family
- -Neglecting wound care or medical appointments
Signs of Anxiety
- -Excessive worry about HS flares, treatment, or the future
- -Avoidance of social situations due to HS
- -Panic attacks
- -Constant scanning of your body for new lesions
- -Difficulty sleeping due to worry
- -Irritability and tension
- -Physical symptoms: racing heart, sweating, trembling
- -Avoiding medical appointments due to fear
Seek Immediate Help If:
You are having thoughts of suicide, self-harm, or harming others. Call or text 988 (US Suicide and Crisis Lifeline), text HOME to 741741 (Crisis Text Line), or go to your nearest emergency room. You are not alone, and help is available.
Strategies That Help
Cognitive Behavioral Therapy (CBT)
Strongest evidenceCBT is the most evidence-based psychological treatment for depression and anxiety in chronic illness. It helps patients identify and challenge unhelpful thought patterns (such as catastrophizing about flares), develop coping strategies, and gradually re-engage with avoided activities. Look for a therapist with experience in chronic illness or health psychology.
Acceptance and Commitment Therapy (ACT)
Strong evidenceACT helps patients develop psychological flexibility - the ability to accept difficult thoughts and feelings about HS without being controlled by them, while committing to actions aligned with their values. Particularly helpful for the grief and loss aspects of chronic illness.
Peer Support and Community
Moderate evidenceConnecting with others who understand HS firsthand reduces isolation and provides practical coping strategies. Online communities and support groups allow patients to share experiences, ask questions, and feel less alone. The War Against HS community is a starting point.
Join the War Against HS CommunityTreating HS Effectively
Strong evidenceEffective HS treatment improves mental health outcomes. Studies show that adalimumab and other biologics significantly improve depression and anxiety scores alongside skin improvement. Advocating for optimal HS treatment is itself a mental health intervention.
Explore HS Treatment OptionsMindfulness-Based Stress Reduction (MBSR)
Moderate evidenceMindfulness practices reduce the suffering caused by pain and difficult emotions by changing the relationship to experience rather than trying to eliminate it. Apps such as Headspace and Calm offer accessible starting points.
Medication for Depression and Anxiety
Strong evidenceFor moderate-to-severe depression or anxiety, medication (antidepressants, anti-anxiety medications) may be appropriate alongside therapy. Discuss this with your primary care physician or psychiatrist. Some antidepressants may also have modest anti-inflammatory effects.
Supporting Someone with HS and Mental Health Challenges
Caring for someone with HS who is also struggling with depression or anxiety requires patience, education, and self-care. Here is how to help: