Hidradenitis Suppurativa: The Emotional Toll and Support Resources

Hidradenitis suppurativa (HS) is not just a physical condition; it profoundly impacts mental and emotional well-being. The chronic pain, discomfort, visible lesions, and potential odor associated with HS can significantly affect self-esteem, body image, social interactions, and overall quality of life. It’s crucial to recognize the psychological burden of HS and provide resources and support to address these challenges.

Psychological Impact of HS

Emotional Distress: Living with HS can lead to a range of negative emotions, including:
- Self-consciousness and Embarrassment: Visible lesions, particularly in intimate areas, can cause significant self-consciousness and embarrassment, impacting intimacy and social confidence.
- Social Isolation: Pain, drainage, odor, and fear of judgment can lead to social withdrawal and isolation. Individuals may avoid social situations, intimacy, and activities they once enjoyed.
- Negative Body Image: Scarring and persistent lesions can negatively affect body image and self-perception.
- Frustration and Hopelessness: The chronic and relapsing nature of HS, coupled with the challenges of finding effective treatments, can lead to feelings of frustration and hopelessness.

Increased Risk of Mental Health Conditions: HS is associated with a significantly increased risk of depression and anxiety. Studies have shown that individuals with HS are more likely to experience these mental health conditions compared to the general population. The chronic inflammation, pain, and psychosocial impact of HS are believed to contribute to this increased risk.

Impact on Daily Life: HS can disrupt various aspects of daily life, including:
- Work Productivity: Pain, discomfort, and the need for frequent medical appointments can reduce work productivity and impact income.
- Relationships: HS can strain personal relationships due to physical discomfort, emotional distress, and social limitations.
- Sexuality: Lesions in the groin and genital areas can significantly impact sexual function and intimacy.
- Sleep: Pain and discomfort can disrupt sleep patterns, leading to fatigue and reduced overall well-being.

Resources and Support

Recognizing the multifaceted impact of HS, it’s crucial to seek comprehensive care that addresses both the physical and psychological aspects of the condition. Available resources and support systems include:

Mental Health Professionals: Therapy and counseling are essential for addressing the emotional and psychological challenges of HS. Cognitive Behavioral Therapy (CBT) and Acceptance and Commitment Therapy (ACT) may be particularly helpful in coping with chronic pain and improving emotional well-being. Support groups can also provide a valuable sense of community and shared experience.

Medical Professionals: A multidisciplinary approach is often necessary, involving:
- Dermatologists: Specialists in skin conditions, crucial for diagnosis and medical management of HS.
- Primary Care Physicians: For overall health management and coordination of care.
- Pain Management Specialists: To address chronic pain associated with HS.
- Wound Care Specialists: For managing complex wounds and surgical aftercare.

Online Resources and Foundations: Several reputable organizations offer information, support, and community for people with HS:

PAPAYA (From the HS Foundation) – An HS Patient Support App

A resource to help navigate flares, schedules, treatments, support groups, clinical trials and much more. Find it here.

The Association of Hidradenitis Suppurativa and Inflammatory Diseases (AHSID)
- The AHSID is a national patient advocacy group focused on education and awareness of HS. https://www.iahsn.org/
HS Foundation
- The HS Foundation offers support, resources, and education for those living with HS. They also partner with HS Connect. https://www.hs-foundation.org/
HS Connect
- HS Connect is a patient-led nonprofit organization committed to connecting the hidradenitis suppurativa community, including patients, family, and clinicians, with resources, support, and solutions. https://www.hsconnect.org/
Hope for HS
- Hope for HS is a volunteer organization focused on raising HS awareness and advocacy. It was the first face-to-face support group in the United States for those with HS. https://hopeforhs.org/
American Academy of Dermatology Association (AAD)
- The AAD offers information on HS and other skin conditions. https://www.aad.org/
MyHealthTeam
- MyHealthTeam connects individuals with chronic health conditions to supportive communities and resources for better management and understanding of their health challenges. https://www.myhealthteam.com/
Shine a Light on HS
- Shine a Light on HS is an educational website designed specifically for patients with HS, offering information and resources. Patient Site

Wound care resources:

Hidrawear: Undergarments made for wound care! Clinically proven to reduce the pain and leakage related to draining HS lesions. Noted to significantly improve patient’s quality of life! Often covered by insurance! Learn more here!

*No conflict of interest with any of the aforementioned products or services.

Conclusion:

It is vital for individuals with HS to know they are not alone and that help is available. Seeking support from medical professionals, mental health providers, and patient communities is essential for managing the complex challenges of HS and improving overall well-being.

References

Tzellos, T., Zouboulis, C.C. Review of Comorbidities of Hidradenitis Suppurativa: Implications for Daily Clinical Practice. Dermatol Ther (Heidelb) 10, 63–71 (2020). https://doi.org/10.1007/s13555-020-00354-2

Hidradenitis suppurativa – Symptoms and causes – Mayo Clinic, accessed February 8, 2025, https://www.mayoclinic.org/diseases-conditions/hidradenitis-suppurativa/symptoms-causes/syc-20352306

Hidradenitis Suppurativa (HS) Comorbidities, accessed February 8, 2025, https://www.hsdiseasesource.com/hs-comorbidities

All You Need To Know About Comorbidities Of Hidradenitis Suppurativa, accessed February 8, 2025, https://hsfoundation.ca/comorbidities-of-hidradenitis-suppurativa/

Mental Health Spotlight: How to Manage Stress with Hidradenitis Suppurativa – Healthline, accessed February 8, 2025, https://www.healthline.com/health/hidradenitis-suppurativa/manage-stress

Helpful Resources for Hidradenitis Suppurativa (HS), accessed February 8, 2025, https://www.nobsabouths.com/hs-patient-stories/hidradenitis-suppurativa-resources

Hidradenitis Suppurativa | Acne Inversa – MedlinePlus, accessed February 8, 2025, https://medlineplus.gov/hidradenitissuppurativa.html

Zehn Skin and Health