Raising Awareness About HS: Why More People Need to Know About It

Hidradenitis Suppurativa (HS) is a chronic, painful, and often misunderstood skin condition that affects millions of people worldwide—but most have never even heard of it. Those living with HS often carry the burden in silence, struggling with symptoms that are physically debilitating and emotionally draining. Despite its widespread impact, HS remains largely invisible in public health discussions, media, and even among healthcare professionals. This lack of awareness contributes to delays in diagnosis, limited access to treatment, and the harmful stigma that many HS patients face.

HS is not contagious, caused by poor hygiene, or simply a “skin issue.” It is a systemic, inflammatory disease that can lead to abscesses, tunnels under the skin, scarring, and severe pain. It affects daily life—making it hard to walk, sit, wear certain clothes, or even go to work. People with HS often endure years of misdiagnoses or are told to “just clean better” or “lose weight,” when what they really need is understanding, compassion, and proper medical care.

The first step toward improving the lives of those with HS is awareness. The more people who understand what HS is, the more likely individuals are to recognize symptoms early, seek treatment, and advocate for themselves. Increased awareness can also lead to more research, better treatments, and the development of support systems that help reduce isolation.

In this article, we’ll explore:

What HS is and why it’s so often overlooked
The impact of misinformation and stigma
How awareness can lead to earlier diagnosis and better care
What each of us can do—whether we’re patients, loved ones, or advocates—to raise awareness and build a more informed, compassionate world

Raising awareness about HS isn’t just important—it’s necessary. Because the more we talk about it, the more lives we can change.

What HS Is and Why It’s So Often Overlooked

Hidradenitis Suppurativa (HS) is a chronic, inflammatory skin condition that causes painful nodules, abscesses, tunnels (sinus tracts), and scarring, most commonly in areas where skin rubs together—like the underarms, groin, buttocks, and under the breasts. These lesions may rupture and drain foul-smelling fluid, and they often return in the same places again and again, causing ongoing discomfort and distress.

Despite how severe HS can be, it’s still widely misunderstood and underdiagnosed. Many people live with HS for years—even decades—without knowing what it is. Instead, they’re misdiagnosed with boils, ingrown hairs, acne, or infections. This often leads to years of ineffective treatments, unnecessary surgeries, and emotional suffering.

One of the main reasons HS is overlooked is that it affects areas of the body that people may be too embarrassed to talk about. The groin, underarms, inner thighs, and buttocks are private and sensitive areas, and many individuals hesitate to show their doctor or describe the full extent of their symptoms. Even when they do, some healthcare professionals are unfamiliar with HS or fail to recognize it as a serious condition.

Additionally, HS often starts during puberty or early adulthood, a time when many young people may feel especially self-conscious. Symptoms like drainage, odor, and visible scarring can make it even harder to ask for help. As a result, the average time between the onset of symptoms and a correct diagnosis can be as long as 7 to 10 years.

There is also no single test for HS. Diagnosis typically relies on a clinical evaluation of symptoms and medical history, which can be missed if the provider is unaware of HS. Many individuals are told they simply have poor hygiene, need to lose weight, or just need better skin care. These assumptions are not only incorrect—they’re harmful.

In truth, HS is not caused by bad hygiene. It is believed to involve a combination of genetic factors, immune system dysfunction, hormonal influences, and possibly metabolic or environmental triggers. People of any size, race, or background can develop HS, and those who do deserve to be treated with dignity and informed medical care.

The Impact of Misinformation and Stigma

One of the most damaging parts of living with HS is the social stigma that often surrounds it. Because of the nature of the condition—its painful wounds, drainage, odor, and scarring—it’s often misunderstood by those who haven’t experienced it. Misinformation about HS is widespread, and it affects how patients are treated not only by others but also by themselves.

Many people mistakenly believe that HS is:

A result of poor hygiene
Contagious
Caused by sexual activity or sexually transmitted infections
A condition that only affects overweight individuals

None of these beliefs are true, but they continue to circulate, especially online and in casual conversations. These misconceptions can cause patients to internalize shame, feel isolated, and avoid seeking treatment. The result is a cycle of silence, misunderstanding, and unnecessary suffering.

For example, someone with HS may avoid dating or intimacy because they’re afraid a partner will reject them. Others might skip work, school, or social events to hide flare-ups or because they physically can’t manage the pain. In many cases, individuals withdraw from relationships altogether—feeling as though no one could understand or accept them.

This sense of isolation often leads to emotional challenges such as:

Depression
Anxiety
Low self-esteem
Chronic stress
Body dysmorphia

It’s also common for people with HS to feel dismissed or invalidated by healthcare providers. When you hear repeatedly that your condition is “just acne,” “just a boil,” or “caused by poor hygiene,” you begin to doubt your own experience. You may stop seeking help altogether—believing that the pain is your fault, or that nothing can be done.

This kind of medical gaslighting contributes not only to emotional harm but also to poor treatment outcomes. HS is a progressive condition. Without appropriate intervention, it can worsen over time, leading to larger abscesses, more tunneling, deeper scarring, and decreased quality of life. When patients are not believed, they are not treated—and the disease is allowed to take a greater toll.

Cultural and racial bias also plays a role. In many communities of color, especially among Black patients, HS is more prevalent yet still underdiagnosed. Studies have shown that Black women are up to three times more likely to have HS than white women, yet they are also more likely to experience delayed care, misdiagnosis, and undertreatment. This reflects a larger problem in medicine—one where certain populations are overlooked, misunderstood, or marginalized.

When stigma is internalized, it can also affect how patients advocate for themselves. You might feel like you have to hide your symptoms or downplay your pain. You might skip dermatology appointments, not refill prescriptions, or avoid discussing treatment options because you feel like you’ll be judged or dismissed. This not only slows the healing process—it deepens the emotional toll of the disease.

That’s why raising awareness is more than just spreading facts—it’s about shifting perception. It’s about reminding people that HS is real, serious, and deserves proper care and compassion. It’s about educating providers so they can diagnose it sooner and treat it more effectively. It’s about encouraging people with HS to seek support, speak openly, and feel seen.

Awareness fights stigma. It bridges the gap between suffering in silence and being empowered to heal. It reminds patients that they are not alone, and that their pain is valid. Most importantly, awareness creates a pathway to earlier diagnosis, more research, better treatments, and hope for a better future.

In Summary

HS is often overlooked—not because it’s rare, but because it lives in the shadows. It thrives in silence, fueled by misinformation, stigma, and shame. But that can change. The more we talk about HS, the more we dismantle harmful myths. The more we listen to patients, the more we understand the true impact of the disease. And the more we educate ourselves and others, the closer we get to a world where no one suffers from HS in silence.

Raising awareness about HS isn’t just a medical responsibility—it’s a human one. Because behind every flare, scar, and painful step is a person who deserves to be heard, believed, and supported.

How Awareness Can Lead to Earlier Diagnosis and Better Care

Raising awareness about Hidradenitis Suppurativa (HS) is more than just educating people—it’s about creating real, meaningful change in how the condition is seen, treated, and lived with. The sooner HS is recognized and properly diagnosed, the better the outcome for those affected. Delays in diagnosis can lead to more severe symptoms, advanced scarring, and emotional trauma. Increasing awareness helps break this cycle.

On average, it takes 7 to 10 years for someone with HS to receive a proper diagnosis. During this time, they may experience repeated misdiagnoses, unnecessary procedures, and ineffective treatments. The longer the condition goes untreated, the more it progresses—leading to deeper abscesses, permanent scarring, sinus tracts, and limited mobility. But when patients and providers alike are more informed, these delays can be dramatically reduced.

Awareness allows people to recognize the symptoms earlier. Someone who’s heard of HS may recognize that those recurring lumps under their arm or near their groin aren’t just random boils—they’re part of a chronic condition. Instead of suffering in silence or treating symptoms with over-the-counter ointments, they might seek a dermatologist sooner and get on the right path to care.

It also helps healthcare providers improve their ability to diagnose HS. General practitioners, nurses, and gynecologists are often the first line of contact for HS patients. If these providers are trained to look for patterns—such as recurring lesions in friction-prone areas—they can refer patients to dermatologists earlier, reducing the chances of misdiagnosis and mistreatment.

Better awareness also encourages:

More research funding: Increased public knowledge can push medical institutions and government bodies to invest in research for better treatments and, eventually, a cure.
Improved medical education: More awareness puts pressure on medical schools and training programs to include HS in their curriculum.
Early intervention strategies: When HS is caught early, patients can benefit from lifestyle changes, topical medications, and other non-invasive interventions that may prevent progression.
Holistic care: Patients who understand HS as a chronic inflammatory disease—not just a skin problem—are more likely to seek whole-body care, including nutritional, hormonal, and emotional support.

What Each of Us Can Do to Raise Awareness and Build a Compassionate World

Creating a world where HS is understood and supported isn’t the job of one person—it’s a collective effort. Whether you’re someone living with HS, a friend or family member, a healthcare provider, or simply someone who cares, there are many ways to get involved and help build a more informed and compassionate community.

For Patients: Speak Up, Share Your Story

If you live with HS, your experience is powerful. You are not just a patient—you are an expert in your own body, and your story can help others feel less alone.

Here are ways you can raise awareness:

Tell your story on social media, in blogs, or through art. Even one honest post about your experience can educate others and inspire compassion.
Participate in HS awareness events, such as World HS Awareness Week. Attend webinars, post educational content, or wear purple (the awareness color) to show support.
Join or start a support group online or in your community. These spaces provide not only emotional support but also a platform for shared education.
Advocate in medical settings. Bring brochures or printouts to your primary care appointments to educate providers. Ask your dermatologist how they can help raise awareness.

You don’t have to bare every detail of your journey to make a difference. Just being open, when and how you feel safe, helps break the silence.

For Loved Ones: Listen, Learn, and Stand Up

If someone you care about is living with HS, you play a vital role in their well-being—and in the fight against stigma.

Here’s how you can help:

Learn about HS. Read reliable sources, ask questions, and educate yourself on the physical and emotional impact of the condition.
Validate their pain. Don’t downplay symptoms or suggest “quick fixes.” Offer empathy, not advice, unless asked.
Offer support without pressure. Whether it’s helping with wound care supplies, driving them to appointments, or simply being there during a flare, your support matters deeply.
Speak up when you hear misinformation. If someone jokes about “bad hygiene” or spreads myths about HS, gently correct them and offer the truth.

Most importantly, remind your loved one that their condition does not define them. Your presence can be a source of strength on their hardest days.

For Advocates and Allies: Use Your Voice

You don’t have to have HS or know someone who does to be an advocate. All it takes is a desire to help people be seen, heard, and supported.

Ways to advocate include:

Share educational content on your platforms. Whether you have 10 followers or 10,000, raising awareness helps chip away at stigma.
Volunteer or donate to organizations that support HS patients and fund research. Examples include Hope for HS or the Hidradenitis Suppurativa Foundation.
Contact legislators about supporting policies that expand healthcare access, protect people with chronic conditions, or fund rare disease research.
Encourage schools and workplaces to make accommodations and foster inclusivity. Chronic illness shouldn’t mean discrimination or exclusion.

Being an ally means standing up for others even when it’s uncomfortable. Your support helps build a world where people with HS don’t have to fight for basic understanding.

For Healthcare Professionals: Educate and Empathize

As a healthcare provider, your words and actions can shape a patient’s entire experience with their illness. With HS in particular, empathy and education go hand-in-hand.

To make a difference:

Learn to recognize HS beyond textbook examples. Be aware of how it appears in different skin tones, body types, and stages.
Take patients seriously. Believe them when they say something is wrong. Validate their pain and avoid making assumptions about hygiene or weight.
Offer treatment options that go beyond just antibiotics or drainage. Talk about lifestyle changes, hormonal influences, and emotional support.
Stay updated on current research and best practices for HS management.

Even if you’re not a dermatologist, your awareness can be life-changing for someone struggling to find answers.

Building a Better Future Together

Awareness is the foundation for change. When people know what HS is, they can spot the symptoms earlier, get the care they need, and live without shame. When families, friends, providers, and communities understand HS, they can offer support that is compassionate, informed, and empowering.

No one should have to suffer in silence. No one should have to explain, over and over, that they’re not “dirty,” not “lazy,” not “making it up.” With awareness, we remove that burden—and replace it with community, clarity, and hope.

Let’s continue to speak, share, educate, and support. Every conversation matters. Every voice counts. And together, we can create a world where living with HS doesn’t mean living in the dark.

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