For many people, the occasional pimple or ingrown hair is a minor annoyance. But for those living with hidradenitis suppurativa (HS), painful, inflamed lumps are a chronic and distressing part of everyday life. This debilitating skin condition doesn’t just affect the body; it takes a toll on self-esteem, social life, and mental health. And despite affecting millions worldwide, HS is still often misunderstood, misdiagnosed, or dismissed.
What Is Hidradenitis Suppurativa?
Hidradenitis suppurativa is a chronic, inflammatory skin condition characterized by recurrent, painful nodules, abscesses, and sinus tracts that typically develop in areas where skin rubs together, such as the armpits, groin, buttocks, and under the breasts. These lesions often rupture and leak pus, leading to scarring and significant discomfort (Alikhan et al., 2019).
The condition usually begins after puberty and is more common in women than men. Despite its prevalence, affecting about 1 to 4 percent of the global population, it can take years for patients to receive a proper diagnosis. That delay often results in irreversible skin damage and a worsening of symptoms (Garg et al., 2017).
The Physical and Emotional Burden
The physical pain of HS can be intense. Imagine trying to walk, sit, or lift your arms while enduring swollen, tender lumps beneath your skin that may burst without warning. But the emotional pain can be just as severe. Many patients report feelings of embarrassment, shame, and isolation. The visible nature of the disease, combined with its tendency to emit an unpleasant odor, often leads sufferers to withdraw from social situations and relationships.
“Sometimes I couldn’t even hug my kids because it hurt too much,” shared Maria, a 34-year-old mother living with HS. “The hardest part wasn’t the pain, it was feeling like I had to hide from everyone.”
Why Is HS So Misunderstood?
One of the main reasons HS is misunderstood is because it often resembles other more common skin conditions, like acne or boils. Some patients are misdiagnosed with simple infections or are told they need to improve their hygiene, a hurtful and inaccurate assumption. In reality, HS is not caused by poor hygiene but by a complex interplay of genetics, inflammation, and possibly hormonal factors (Revuz, 2009).
The lack of awareness among healthcare providers also contributes to delays in treatment. According to a study by Garg et al. (2017), the average delay in diagnosis is over seven years. During this time, patients may see multiple doctors, undergo unnecessary treatments, and feel increasingly hopeless.
Contributing Factors and Triggers
While the exact cause of HS is still being researched, several risk factors have been identified. These include a family history of the condition, smoking, obesity, and hormonal changes. Flare-ups are often unpredictable, but some people find that stress, heat, friction, or menstruation can trigger symptoms (Alikhan et al., 2019).
Lifestyle changes such as weight management, smoking cessation, and wearing loose-fitting clothing can sometimes help reduce flare-ups. However, these are not cures and may not work for everyone.
Treatment Options
There is no one-size-fits-all treatment for HS, but various options can help manage the condition. Mild cases may be treated with topical clindamycin or antibacterial washes. More moderate to severe cases often require oral antibiotics, hormonal therapy, or biologic medications such as adalimumab, currently the only FDA-approved treatment for HS (Kimball et al., 2016).
In some cases, surgical intervention may be necessary to remove affected tissue and reduce recurrence. Psychological support, including therapy or support groups, can also play a critical role in helping patients cope with the emotional impact of the disease.
Building Awareness and Empathy
It is time to bring HS out of the shadows. Increased awareness can lead to earlier diagnoses, better treatments, and less stigma. More importantly, it can help people with HS feel seen and supported. Living with a chronic condition is hard enough, and no one should have to do it in silence.
Education campaigns, patient advocacy, and training for healthcare professionals can make a huge difference. Empathy, from family, friends, and the medical community, can help restore dignity and hope to those affected.
As Maria put it, “Just knowing someone understands what I’m going through makes all the difference.”
Hidradenitis suppurativa is more than just a skin condition. It is a life-altering disease that affects both physical and mental well-being. Although treatments exist, a cure remains elusive. What patients need most, along with effective medical care, is compassion, understanding, and a willingness to break the silence surrounding HS. Only then can we truly begin to heal.
References
- Alikhan, A., Sayed, C., Alavi, A., Alhusayen, R., Brassard, A., Burkhart, C., … & Zouboulis, C. C. (2019). North American clinical management guidelines for hidradenitis suppurativa: A publication from the United States and Canadian Hidradenitis Suppurativa Foundations. Journal of the American Academy of Dermatology, 81(1), 76–90. https://doi.org/10.1016/j.jaad.2019.02.067
- Garg, A., Kirby, J. S., Lavian, J., Lin, G., & Strunk, A. (2017). Sex- and age-adjusted population analysis of chronic hidradenitis suppurativa in the United States. JAMA Dermatology, 153(8), 760–764. https://doi.org/10.1001/jamadermatol.2017.0201
- Kimball, A. B., Okun, M. M., Williams, D. A., Gottlieb, A. B., Papp, K. A., Zouboulis, C. C., … & Jemec, G. B. (2016). Two Phase 3 Trials of Adalimumab for Hidradenitis Suppurativa. New England Journal of Medicine, 375(5), 422–434. https://doi.org/10.1056/NEJMoa1504373
- Revuz, J. E. (2009). Hidradenitis suppurativa. Journal of the European Academy of Dermatology and Venereology, 23(9), 985–998. https://doi.org/10.1111/j.1468-3083.2009.03111.x
