The unbearable burden of hidradenitis suppurativa
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A chronic, painful, and often misunderstood skin condition that disrupts productivity and mental health – highlighting the need for access to care, awareness, and flexibility in the workplace
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Hidradenitis suppurativa (HS) is a debilitating and often misunderstood chronic inflammatory skin disease characterized by painful nodules, abscesses, and draining tunnels that form deep within the skin.1 It mainly affects areas where the skin rubs together, such as the armpits, groin, and under the breasts.1,2
Living with an unbearable condition Nodules are tender, inflamed lumps that may progress to abscesses, which can rupture and drain pus-containing malodorous fluid.1,3 These lesions cause excruciating pain, deep emotional distress, and significant disruption to daily life. Over time, recurrent inflammation can create interconnected tunnels within the skin, leading to chronic draining wounds and extensive scarring that limit mobility.1,3
While the exact cause of HS isn’t fully understood, it’s believed to result from a combination of genetic, environmental, and physiological factors. 1,2 In Canada, as many as four in every 100 people may be living with HS.2 The condition affects people of all backgrounds but is more common in women and people of colour. Smoking, obesity, and metabolic syndrome are also associated with an increased risk of developing HS and can worsen its symptoms.2
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“My goal is to reach a point where HS patients no longer come to me with advanced disease. Early recognition and compassion can change everything”
Dr. Lauren Lam,
Canadian Hidradenitis Suppurativa Foundation
Despite its prevalence, HS remains underdiagnosed and misunderstood. Dr. Lauren Lam, dermatologist and vice president of the Canadian Hidradenitis Suppurativa Foundation, explained during a recent Mapol webinar sponsored by UCB Canada: “HS is not an infection – it’s inflammation. It can appear in many different forms, and it’s often misdiagnosed as acne or a cyst. Some of my patients have waited years before anyone recognized it for what it was.”
“I was dealing with excruciating pain, mostly in silence, pushing through life and work while physically and emotionly drained. And yet, few around me truly understood the devastating impact HS had on me”
Chevonne Smellie,
The Hidradenitis & Me Support Group
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Published March 16, 2026
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The patient burden Chevonne Smellie, co-director of The Hidradenitis & Me Support Group, has lived with HS since her teens, navigating years of stigma, misdiagnosis, and untreated pain.
“I was dealing with excruciating pain, mostly in silence, pushing through life and work while physically and emotionally drained,” Smellie explained. “And yet, few around me truly understood the devastating impact HS had on me.”
Even routine actions such as sitting, driving, or reaching overhead can trigger sharp pain. Unpredictable flares make planning impossible.
“I hid my condition out of shame and fear,” Smellie shared. “Many patients stop seeking treatment altogether because they’re tired of being told it’s their fault.”
These experiences are common. According to published evidence, the average Canadian HS patient sees five physicians and attends 17 appointments before receiving a diagnosis – a process that can take over eight years.3 During this delay, inflammation often leads to irreversible scarring, functional impairment, and psychological distress.3,4
Psychological and social consequences HS affects more than the skin. It impacts mental health, self-image, and relationships. Depression, anxiety, and social withdrawal are common among those living with this chronic condition.4,5 Patients often report embarrassment and isolation caused by visible wounds, scarring, or odour from draining lesions.4,5
Smellie said she changed her wardrobe to hide evidence of flares.
“My closet became mostly black. Not because I liked it, but because HS made that choice for me.”
Dr. Lam added, “HS patients are suffering from chronic pain you can’t always see. Many are told it’s just acne, but the reality is far more severe.”
The economic and workplace impact HS imposes a substantial burden, as physical pain, fatigue, and profound psychosocial distress contribute to both absenteeism and reduced productivity at work.5,6 In international surveys, more than 80 percent of people with HS reported negative
Diagnosing and managing HS Early and accurate diagnosis is critical to improving outcomes in HS. The Hurley Staging System categorizes HS as:
Stage I (mild): isolated abscesses without tunnels Stage II (moderate): recurrent abscesses with tunnels and scars Stage III (severe): extensive interconnected tunnels across entire areas3
There is a critical “window of opportunity” early in the course of HS when controlling skin inflammation is most effective – before irreversible scarring and tunnel formation lead to lasting tissue damage.6,7 Initiating effective treatment during this period can significantly reduce disease progression and lessen the long-term burden on patients and caregivers.3
Supporting employees living with HS Employers can play a key role in supporting individuals affected by HS:
Awareness: Recognize HS as a chronic inflammatory disease, not a hygiene issue.1,4 Flexibility: Allow remote or flexible work to accommodate unpredictable flare-ups. Empathy: Train supervisors to approach health disclosures with understanding and discretion. Confidentiality: Ensure private processes for workplace accommodations.
“HS patients need full access to all available treatments, and they need them now,” Smellie emphasized. “Otherwise, we’re forcing people to live in pain when help exists.”
By fostering understanding and flexibility, organizations can improve well-being and productivity while supporting retention of skilled employees.
Moving forward HS remains one of dermatology’s most underrecognized and misunderstood conditions – a hidden illness that carries visible consequences.1,4,5 However, awareness, early diagnosis, and compassionate workplace practices can transform the patient journey.
“My goal,” Dr. Lam concluded, “is to reach a point where HS patients no longer come to me with advanced disease. Early recognition and compassion can change everything.”
For employers, policymakers, and healthcare professionals, understanding HS means recognizing the unbearable burden plan members face and ensuring no one suffers in silence.
References 1. Krueger JG, Frew J, Jemec GBE, Kimball AB, Kirby B, Bechara FG, et al. Hidradenitis suppurativa: New insights into disease mechanisms and an evolving treatment landscape. British Journal of Dermatology. 2024 Jan 23;190(2):149–62. 2. Sabat R, Jemec GBE, Matusiak Ł, Kimball AB, Prens E, Wolk K. Hidradenitis suppurativa. Nat Rev Dis Primers. 2020 Mar 12;6(1):18. 3. Johnston LA, Alhusayen R, Bourcier M, Delorme I, George R, O’Brien E, et al. Practical guidelines for managing patients with hidradenitis suppurativa: An update. J Cutan Med Surg. 2022 Sep;26(2_suppl):2S-24S. 4. Canadian Skin Patient Alliance. Scarred for Life: 2020 Update – A National Report of Patients’ Experiences Living with Hidradenitis Suppurativa. 2020. 5. Global Hidradenitis Suppurativa Atlas. Global Report on Hidradenitis Suppurativa 2023. Accessed Feb 6 2025. 6. Martorell A et al. Present and future trends of biologic therapies and small molecules in hidradenitis suppurativa. J IMIDs. 2022; 2(1):8–19. 7. Martorell A, Caballero A, González Lama Y, Jiménez-Gallo D, Lázaro Serrano M, Miranda J, et al. Management of patients with hidradenitis suppurativa. Actas Dermosifiliogr. 2016 Sep;107 Suppl 2:32–42. 8. Van Der Zee HH, Prens EP, Boer J. Deroofing: A tissue-saving surgical technique for the treatment of mild to moderate hidradenitis suppurativa lesions. Journal of the American Academy of Dermatology. 2010 Sep;63(3):475–80.
Living with HS: a snapshot
The average Canadian HS patient sees 5 physicians and attends 17 appointments before receiving a diagnosis – a process that can take over 8 years
What can employers do?
Recognize HS as a chronic inflammatory disease, not a hygiene issue
Awareness
Allow remote or flexible work to accommodate unpredictable flare-ups
Flexibility
Train supervisors to approach health disclosures with understanding and discretion
Empathy
Ensure private processes for workplace accommodations
Confidentiality
effects on work, social life, and relationships, and nearly 70 percent experienced depression.
Smellie described the challenges of maintaining employment amid constant flares: “I was exhausted trying to balance my disease and work. I couldn’t keep up, and I just needed a break.”
Daily wound-care supplies, dressings, and frequent laundry create hidden financial burdens, while reduced work hours or job loss can intensify financial hardship.5,6 Dr. Lam noted that while wound-care programs can shift some expenses to the healthcare system, “the overall economic impact remains substantial.”
procedure in which the “roof” of an abscess, cyst, or tunnel is removed.8
Although surgery can provide meaningful and lasting relief from pain, patients may continue to face unpredictable flares, oozing lesions, and extensive scarring if not managed simultaneously with medical management such as a biologic.
“For most patients, there isn’t a single silver bullet,” Dr. Lam said. “We combine antibiotics, hormones, biologics, and procedures like de-roofing. Early treatment can prevent years of pain.”
Despite therapeutic advances, access to dermatologic care and biologic treatment remains inconsistent across Canada, leaving many patients without the specialized support they need.3
80% of people with HS reported
negative effects on work, social life, and relationships, and nearly 70% experienced depression
Many patients require medical therapy, with biologics representing the gold standard for Hurley stage II and III disease.3
Surgical intervention, most often de-roofing, also plays an important role in managing advanced HS. De-roofing is a tissue-preserving
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Events
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Safety
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Performance management
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People analytics
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Payroll
Conflict management
Wellness/mental health
Recruitment and staffing
Leadership/succession planning
Compensation and benefits
Training and development
Recognition
HR technology
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Focus Areas
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