The Hidden Timeline of Hidradenitis Suppurativa: How Diagnostic Delay Shapes Patient Identity

Written by Garner Macie^1,2

Ross Academic Research Society¹, Ross University School of Medicine² 

Katherine was fourteen when the cycle began: clinic visit, incision and drainage, temporary relief, recurrence. Every few months, the same painful lesion returned to her upper inner thigh, and every few months, it was treated the same way. There was no clear explanation, no unifying diagnosis—only a pattern that slowly became routine. The procedures addressed the flare, but not the question that remained afterward: why did this keep happening?

Over time, the absence of an answer began to shape how she understood her own body. Without language for what she was experiencing, recurrence seemed personal. It became easier to assume she was doing something wrong than to consider that an underlying inflammatory condition might be responsible. Each episode was framed as an isolated event, supporting the idea that this was simply something her body did. Eventually, she stopped asking why.

She had been a dedicated cross-country runner. As flares grew increasingly frequent and painful, practices grew harder to attend. Long runs aggravated the lesion; recovery meant dreading the next recurrence. Gradually, she stepped away from the sport. There was no announcement, no explanation to teammates or friends. Without a diagnosis, there was nothing to disclose, only a private realignment of what seemed possible. What began as a localized skin lesion quietly remodeled her daily routines and, in small but meaningful ways, her identity.

Nearly four years after the first procedure, a provider finally named it: hidradenitis suppurativa. There was no cure, she was told. The diagnosis brought tears—not only because it was chronic, but because it ended years of uncertainty. An attempt at reassurance followed: it could have been more severe, more widespread. Yet whenever clarity arrives after prolonged ambiguity, comparison offers little comfort. What affected me most was not the diagnosis itself, but the long period in which she had adapted to a disease that had never been named.

Her experience is not unusual. Diagnostic delay in hidradenitis suppurativa is well documented, with studies reporting an average delay of seven to ten years before definitive diagnosis (1). During that interval, patients frequently undergo repeated incision and drainage procedures, receive intermittent courses of antibiotics, and are treated for “recurrent abscesses” without recognition of a chronic inflammatory condition (1,3). HS is frequently associated with certain phenotypes, which may further delay consideration in patients who do not fit the expected profile (2,3). By the time the diagnosis is made, the disease has often progressed—not only clinically, but psychologically.

HS is a chronic inflammatory disorder with well-established epidemiologic patterns and associated comorbidities, including significant psychosocial burden (4). By the time the diagnosis is made, the disease has often progressed—not only clinically, but psychologically (1,4). Recurrent pain, drainage, and involvement of intimate areas contribute to impaired quality of life and increased rates of anxiety and depression among affected patients (4).

When a condition goes unnamed, patients construct their individual narratives to make sense of it. In HS, those narratives may include self-blame, normalization of pain, and quiet withdrawal from activities that previously defined them. The burden of the disease goes beyond nodules and sinus tracts; it encompasses the adaptations patients make in silence. Recurrent lesions in intimate areas can shape how individuals dress, socialize, exercise, and form relationships—often long before they receive validation that their symptoms reflect a recognized medical condition (4).

Naming a disease does not erase its impact, but it does alter the framework through which patients interpret their experiences. A diagnosis can turn “something wrong with me” into “a condition that can be managed.” It can shift recurrence from personal failure to pathophysiology. In dermatology, in which conditions are both visible and intensely personal, language carries significance. The words we use—and the timing with which we use them—shape how patients understand themselves (2). From an evidence-based perspective, earlier recognition and appropriate referral have the potential to reduce not only disease progression but also the cumulative psychosocial burden experienced during years of diagnostic uncertainty.

Hidradenitis suppurativa is not characterized only by inflammation. It is defined, in part, by the years many patients spend adapting before diagnosis—relinquishing activities, adjusting expectations, and normalizing discomfort in the absence of clarity. Recognizing that the hidden timeline is as important as treating the lesions themselves is essential to comprehensive care. By acknowledging not merely the physical manifestations of HS but also the identity shifts that precede diagnosis, we advance closer to a more complete understanding of the disease and the people living with it.

 Ross Academic Research Society Blog March 2026 https://www.rusmrars.com/the-blog

References

1. Nguyen TV, Damiani G, Orenstein LAV, Hamzavi I, Jemec GBE. Delayed diagnosis of hidradenitis suppurativa and its effect on patients and the healthcare system. Int J Dermatol. 2021;60(3):e117–e118. doi:10.1111/ijd.15579

   
   
   
   

2. Alharbi Z, Kauczok J, Pallua N. Obstacles to early diagnosis and treatment of hidradenitis suppurativa: current perspectives on improving clinical management. Clin Cosmet Investig Dermatol. 2024.

   
   
   
   

3. Garg A, Neuren E, Cha D, et al. Uncovering the burden of hidradenitis suppurativa misdiagnosis and underdiagnosis: a machine learning approach. JAMA Dermatol. 2023;159(7):760–768. doi:10.1001/jamadermatol.2023.1450

   
   
   
   

4. Alikhan A, Sayed C, Alavi A, et al. Hidradenitis suppurativa: pathogenesis, clinical presentation, epidemiology, and comorbid associations. J Am Acad Dermatol. 2019;81(4):1045–1058. doi:10.1016/j.jaad.2019.05.090

Ross Academic Research Society Blog March 2026 https://www.rusmrars.com/the-blog