Clothing, Careers, and Climate: HS Influence on Choices

Hidradenitis suppurativa (HS) is a chronic, immune-mediated inflammatory disease marked by recurrent nodules, abscesses, draining sinus tracts, and scarring in intertriginous areas. In clinical practice, the physical burden of HS is readily apparent. However, the psychosocial and functional consequences are often less visible yet equally profound. Compared with other inflammatory dermatoses such as acne vulgaris, psoriasis, and atopic eczema, patients with HS consistently report worse quality of life. Prior quantitative studies using tools such as the Dermatology Life Quality Index show that approximately 60% of patients describe a very large or extremely large negative impact on daily life. Higher anxiety and depression scores on the Hospital Anxiety and Depression Scale and lower self-esteem on the Rosenberg Self-Esteem Scale further underscore this burden.¹

A recent qualitative study conducted at Atrium Health Wake Forest Baptist in Winston-Salem, North Carolina, sought to better characterize how HS shapes patients’ lives over time. Rather than relying solely on survey instruments, investigators conducted in-depth interviews to understand the cumulative impact of the disease.²

Study Design

Between 2021 and 2024, researchers interviewed 40 patients with HS at a single academic dermatology center. Interviews were recorded, transcribed, and analyzed using thematic analysis. After thematic saturation was reached, 28 interviews were included in the final analytic sample. Multiple interviewers participated to reduce individual bias, and transcripts were independently reviewed before themes were finalized.

Five major themes emerged: life-altering choices, negative emotions, companionship and disclosure, impaired functionality, and financial strain.

Life Choices Shaped by HS

Many patients described HS as a constant factor in their decision-making. Clothing was the most frequently cited adjustment. Eighty-six percent of participants reported modifying wardrobe choices to reduce friction or conceal drainage and scarring. Loose-fitting garments and dark colors were common strategies to manage discomfort and avoid visible leakage.

Educational decisions were also influenced. Although most patients ultimately pursued their academic goals, 25% reported altering their path due to HS. Some opted for online learning to avoid prolonged sitting discomfort or anxiety about flares in public settings. Although online education offered flexibility, several patients expressed concern about missing in-person experiences or perceived disadvantages in the job market.

A smaller subset of participants reported relocating to cooler or less humid climates in hopes of reducing flare frequency. Though uncommon, this finding illustrates how HS can shape even major life transitions.

Emotional Toll and Mental Health

Emotional distress was a dominant theme. Eighty-six percent of patients described experiencing anxiety, sadness, or anger related to their disease. Anxiety was most common and frequently tied to unpredictability of flares and fear of malodor in social or professional environments.

Participants often described diminished self-confidence and feelings of hopelessness during active flares. Importantly, these emotional effects were not limited to severe cases; even patients who managed to maintain employment or relationships reported ongoing psychological strain. The cyclical nature of HS—periods of relative control followed by painful exacerbations—appeared to amplify emotional instability.

Social Relationships and Disclosure

The study highlighted a complex relationship between HS and social connection. Although 39% of participants credited family members or partners as essential sources of support, 64% reported withdrawing socially during flares. Many patients preferred to isolate rather than risk embarrassment or misunderstanding.

Nearly half chose not to disclose their diagnosis widely. Decisions to privatize the condition were often motivated by a desire to avoid intrusive questions or misconceptions about contagion. Notably, patients who did disclose their diagnosis generally did not regret doing so, though isolated negative experiences were reported.

Functional Limitations

Eighty-two percent of participants described periods when HS significantly limited daily activities. Patients reported difficulty sitting, walking, lifting their arms, or performing routine tasks during active disease. Several characterized these periods as putting life “on hold.”

Importantly, dysfunction was not limited to acute flares. Chronic scarring and residual pain also contributed to long-term limitations, suggesting that cumulative tissue damage plays an ongoing role in reduced functionality.

Financial Burden

Financial impact varied but was substantial for many patients. Forty-three percent reported economic strain related to direct medical costs, wound care supplies, or clothing replacement. Insurance status was a major determinant of access to advanced therapies such as biologics. One patient estimated annual out-of-pocket costs could reach $35,000 without insurance coverage.

Indirect costs were also significant. Eighteen percent of participants reported being on disability or losing employment due to absenteeism from flares. Reduced productivity compounded emotional and financial stress.

Clinical Implications

This qualitative analysis underscores that HS extends far beyond cutaneous symptoms. Patients described a disease that shapes daily habits, educational and career decisions, relationships, mental health, and financial stability. For dermatologists, these findings reinforce the importance of comprehensive care. Routine screening for anxiety and depression, proactive discussion of workplace or school accommodations, and timely escalation to effective systemic therapies may help mitigate long-term burden.

Although limited by its single-center design and lack of stratification by disease severity, the study provides a detailed narrative of how HS affects patients’ lives. For clinicians, incorporating these insights into patient counseling may foster more empathetic, patient-centered management and highlight the urgency of achieving sustained disease control.

References

1. Patel KR, Lee HH, Rastogi S, et al. Association between hidradenitis suppurativa, depression, anxiety, and suicidality: a systematic review and meta-analysis. J Am Acad Dermatol. 2020;83(3):737-744. doi:10.1016/j.jaad.2019.11.068
2. Buttar BA, Ruley A, Swain E, et al. Overall cumulative burden of hidradenitis suppurativa: an in-depth qualitative examination. JEADV Clin Prac. Published online March 2, 2026. doi:10.1002/jvc2.70288