The Hidden Timeline of Hidradenitis Suppurativa

How Diagnostic Delay Shapes Patient Identity

Macie Garner, MS4Ross Academic Research Society (RARS)Ross University School of Medicine

Introduction

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 each time, it was treated the same way. There was no unifying diagnosis, only a recurring pattern without explanation.

The procedures addressed the flare, but not the question that lingered: why did this keep happening?

Over time, the absence of answers began to shape how she understood her own body. Without language to contextualize her experience, recurrence felt personal. It became easier to assume fault than to consider an underlying inflammatory condition. Eventually, she stopped asking why.

The Quiet Reshaping of Identity

Katherine had been a dedicated cross-country runner. As flares grew more frequent and painful, participation became increasingly difficult. Long runs aggravated symptoms; recovery was overshadowed by anticipation of 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 recalibration of what seemed possible. What began as a localized dermatologic issue quietly reshaped her daily routines and, in meaningful ways, her identity.

The Moment of Diagnosis

Nearly four years after the first procedure, a provider finally named her condition: hidradenitis suppurativa (HS).

There was no cure.

The diagnosis brought tears—not only because it was chronic, but because it ended years of uncertainty. Attempts at reassurance followed: it could have been worse. Yet when clarity arrives after prolonged ambiguity, comparison offers little comfort.

What mattered most was not the diagnosis itself—but the years spent adapting to a disease that had never been named.

A Common Clinical Pattern

Katherine’s experience is not unusual. Diagnostic delay in HS is well documented, with an average delay of 7–10 years before definitive diagnosis (1).

During this period, patients are often:

• Treated with repeated incision and drainage

• Prescribed intermittent antibiotics

• Labeled as having “recurrent abscesses”

These approaches treat acute symptoms but fail to recognize the underlying chronic inflammatory condition (1,3).

Additionally, HS is often associated with specific phenotypes, which may delay diagnosis in patients who do not fit expected clinical profiles (2,3).

Beyond the Skin: Psychosocial Burden

HS is a chronic inflammatory disorder with well-established epidemiology and comorbidities, including significant psychosocial impact (4).

By the time diagnosis is made, the disease has often progressed:

• Clinically → more extensive disease

• Psychologically → accumulated burden

Patients frequently experience:

• Chronic pain and drainage

• Lesions in intimate areas

• Reduced quality of life

• Increased rates of anxiety and depression (4)

The Narrative Patients Build

When a condition remains unnamed, patients construct their own narratives.

In HS, these narratives often include:

• Self-blame

• Normalization of pain

• Withdrawal from activities

The burden extends beyond nodules and sinus tracts. It includes the silent adaptations patients make:

• Changes in clothing choices

• Social withdrawal

• Avoidance of physical activity

• Impact on relationships

These shifts often occur long before patients receive validation that their symptoms reflect a recognized medical condition (4).

The Transformative Power of Diagnosis

Naming a disease does not eliminate its impact—but it changes its meaning.

A diagnosis can transform:

• “Something is wrong with me” → “This is a medical condition”

• “I caused this” → “This has a biological basis”

In dermatology—where conditions are visible and deeply personal—the timing and language of diagnosis are critical (2).

Earlier recognition and referral can:

• Reduce disease progression

• Minimize cumulative psychological burden

Rethinking the Timeline

Hidradenitis suppurativa is not defined solely by inflammation. It is also defined by the years patients spend adapting without understanding.

During this hidden timeline, patients:

• Relinquish activities

• Adjust expectations

• Normalize discomfort

Recognizing this phase as clinically meaningful is essential to delivering comprehensive care.

Conclusion

To understand HS fully, clinicians must look beyond physical manifestations and consider the lived experience that precedes diagnosis.

By acknowledging both the biological and identity-level impacts of diagnostic delay, we move toward more empathetic, patient-centered care—and a more complete understanding of the disease.

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.

2. Alharbi Z, Kauczok J, Pallua N. Obstacles to early diagnosis and treatment of hidradenitis suppurativa. Clin Cosmet Investig Dermatol. 2024.

3. Garg A, Neuren E, Cha D, et al. Misdiagnosis and underdiagnosis of HS: a machine learning approach. JAMA Dermatol. 2023;159(7):760–768.

4. Alikhan A, Sayed C, Alavi A, et al. Hidradenitis suppurativa: pathogenesis and clinical presentation. J Am Acad Dermatol. 2019;81(4):1045–1058.