Breaking the Stigma of HS: Why It’s Not Just ‘Bad Hygiene’

Hidradenitis Suppurativa (HS) is a chronic, inflammatory skin condition that affects millions of people worldwide. Despite being a real and serious medical condition, HS is often misunderstood and unfairly stigmatized. One of the most common and harmful misconceptions about HS is that it is caused by poor hygiene, leading to shame, embarrassment, and isolation for those who live with it.

This false belief stems from the appearance of HS lesions, which can resemble boils, abscesses, or severe acne. Because these painful lumps often occur in sensitive areas like the armpits, groin, and under the breasts, people mistakenly assume they are the result of sweat, bacteria buildup, or a lack of cleanliness. In reality, HS is an auto-inflammatory condition that has nothing to do with hygiene.

The stigma surrounding HS can have serious consequences, preventing individuals from seeking medical treatment, talking about their symptoms, or finding emotional support. Many people suffer in silence, afraid of being judged by friends, family, employers, or even healthcare professionals who may not fully understand the disease. The emotional toll of this misconception can lead to anxiety, depression, and a reduced quality of life.

In this article, we will explore:

✔ The science behind HS – Understanding why it occurs and why hygiene is not a factor.
✔ Why the hygiene myth is so harmful – The emotional and social impact of stigma.
✔ How to break the stigma – Educating others, advocating for yourself, and finding support.

HS is a medical condition, not a personal failing, and it’s time to change the conversation. By raising awareness, challenging misconceptions, and supporting those with HS, we can help break the stigma and ensure that people receive the understanding and medical care they deserve.

The Science Behind HS: Understanding Why It Occurs and Why Hygiene Is Not a Factor

Hidradenitis Suppurativa (HS) is a chronic, inflammatory skin disease that affects hair follicles and sweat glands, primarily in areas where skin rubs together. It causes painful lumps, abscesses, and tunnels under the skin, leading to scarring and long-term skin damage. Despite its severity, HS is widely misunderstood, and one of the most damaging myths is the idea that it is caused by poor hygiene. In reality, HS has nothing to do with cleanliness—it is a complex medical condition linked to genetics, immune system dysfunction, and inflammation.

What Causes HS?

HS develops due to blockages in the hair follicles, but these blockages are not caused by dirt or bacteria from poor hygiene. Instead, the disease is driven by inflammation and an overactive immune response.

✔ Faulty Hair Follicles and Inflammation

HS begins when hair follicles become clogged, leading to swelling, pain, and fluid buildup.
Unlike acne, which is caused by oil and bacteria, HS is driven by inflammation deep within the skin.

✔ Overactive Immune System

HS is considered an auto-inflammatory disease, meaning the body’s immune system attacks healthy tissue by mistake.
This leads to chronic inflammation in areas where HS flare-ups occur, causing painful swelling and abscesses.

✔ Genetics and Family History

Studies show that HS often runs in families, suggesting a genetic component.
If a close relative has HS, an individual is more likely to develop it, further proving that hygiene is not the cause.

✔ Hormonal and Lifestyle Triggers

While HS is not caused by lifestyle choices, certain factors like hormonal changes, stress, obesity, and smoking may worsen symptoms or trigger flare-ups.
However, even people who are very clean and maintain a healthy lifestyle can develop HS, reinforcing the fact that it is a medical condition, not a hygiene issue.

Why Hygiene Is Not a Factor

Because HS flare-ups can cause pus drainage, unpleasant odors, and skin infections, people often assume it is due to lack of cleanliness. However, this belief is incorrect and harmful for several reasons:

✔ HS Can Develop in People with Excellent Hygiene

Many HS patients follow strict hygiene routines, yet they still experience flare-ups and painful abscesses.
No amount of showering, scrubbing, or antibacterial soap can prevent HS because the underlying cause is internal inflammation, not bacteria buildup.

✔ HS Flare-Ups Are Not Prevented by Washing More Often

Unlike conditions like athlete’s foot or bacterial skin infections, HS is not something that can be washed away or treated with antibacterial soap.
Excessive washing or using harsh soaps and scrubbing can actually worsen flare-ups by irritating the skin.

✔ HS Symptoms Are Caused by Inflammation, Not Dirt

The abscesses and tunnels formed by HS are not due to clogged pores from dirt but from the immune system’s overreaction inside the skin.
While keeping the skin clean is important for preventing infections, hygiene alone cannot stop HS from developing.

Breaking the Hygiene Myth

The belief that HS is caused by poor hygiene is not only medically inaccurate but also harmful to those living with the condition. This stigma leads to:

✔ Shame and Embarrassment – Many people with HS feel judged, which can lead to social withdrawal and low self-esteem.
✔ Delayed Diagnosis – Because of stigma, some individuals avoid seeking medical help, leading to worsening symptoms and more severe complications.
✔ Emotional and Psychological Toll – The constant need to defend personal hygiene habits can lead to stress, anxiety, and depression

HS is an auto-inflammatory skin disease caused by immune system dysfunction, genetic factors, and chronic inflammation, not poor hygiene. People with HS deserve compassion, understanding, and proper medical care, not judgment based on myths and misconceptions. By educating others and breaking the hygiene stigma, we can help HS patients receive the support, respect, and treatment they need.

Why the Hygiene Myth of HS Is So Harmful

One of the most damaging misconceptions about Hidradenitis Suppurativa (HS) is that it is caused by poor hygiene. This myth leads to stigma, shame, and misunderstanding, making it harder for people with HS to seek medical help, receive proper treatment, and feel supported by those around them. HS is not caused by uncleanliness—it is a chronic, inflammatory skin disease linked to genetics, immune system dysfunction, and hormonal factors. However, the false belief that HS is due to poor hygiene persists, creating unnecessary suffering for those who live with the condition.

1. It Causes Shame and Low Self-Esteem

The hygiene myth makes many people with HS feel ashamed of their bodies, leading to low self-esteem and social anxiety. Because HS flare-ups can cause painful abscesses, drainage, and scarring, those with the condition often worry about how others perceive them. The assumption that HS is caused by a lack of cleanliness can make individuals feel like their condition is their fault, even though HS is a medical condition they have no control over.

✔ Many HS sufferers avoid wearing certain clothing because they fear that others will judge them based on their skin.
✔ Some people with HS withdraw from social activities due to embarrassment about their condition.
✔ The belief that HS is self-inflicted can lead to self-blame, guilt, and emotional distress.

2. It Leads to Delayed Diagnosis and Treatment

Because of the shame and stigma associated with HS, many people hesitate to seek medical care, believing they just need to “clean better” or “take better care of their skin.” Unfortunately, this delay in seeking professional help means that HS progresses to more severe stages before a diagnosis is made.

✔ Many HS sufferers try excessive washing, harsh antibacterial soaps, and scrubbing, which can actually worsen symptoms.
✔ Some avoid seeing a doctor for years because they fear being judged or dismissed.
✔ A delayed diagnosis means fewer treatment options, as HS can become progressively worse over time.

3. It Encourages Misinformation and Judgment from Others

The general lack of awareness about HS leads to unnecessary judgment from friends, family, coworkers, and even some medical professionals. When people believe that HS is caused by poor hygiene, they may make hurtful comments, offer unwanted advice, or assume that someone with HS isn’t taking care of themselves properly.

✔ Some people with HS hide their condition from family and friends, fearing they will be seen as “dirty.”
✔ At work or school, those with HS may feel uncomfortable explaining frequent absences or pain due to fear of judgment.
✔ Even some doctors dismiss HS symptoms, assuming they are due to poor personal care rather than a medical condition.

4. It Impacts Mental Health and Emotional Well-Being

Living with HS is already physically painful, but the emotional toll of stigma makes it even harder to cope. The combination of chronic pain, visible lesions, and social judgment can lead to anxiety, depression, and isolation. Many people with HS feel like they have to suffer in silence, which can have long-term consequences for their mental health.

✔ Some individuals experience social withdrawal and loneliness due to fear of judgment.
✔ The constant need to explain that HS isn’t caused by hygiene can lead to frustration and exhaustion.
✔ Feelings of hopelessness and depression are common in people with chronic conditions that are misunderstood by society.

5. It Prevents Advocacy and Awareness

The hygiene myth also hinders progress in medical research, awareness, and advocacy. Because HS is misunderstood, it does not receive the same level of attention and funding as other chronic illnesses. This means fewer resources, less research, and fewer treatment advancements for those living with HS.

✔ Many public health campaigns overlook HS, leaving patients without proper representation.
✔ Some medical professionals are unfamiliar with HS because it is still considered a rare disease, despite affecting millions of people worldwide.
✔ Breaking the hygiene myth is essential to increasing awareness and improving care for HS patients.

The hygiene myth surrounding HS is incredibly harmful, creating shame, stigma, and barriers to medical care. HS is a chronic, inflammatory condition, not a result of uncleanliness or neglect. By educating others, challenging misconceptions, and advocating for awareness, we can help reduce stigma and improve support for people living with HS.

People with HS deserve compassion, understanding, and access to proper treatment—without judgment or misinformation standing in their way.

How to Break the Stigma of HS

Hidradenitis Suppurativa (HS) is a chronic inflammatory skin disease, but due to widespread misconceptions, many people mistakenly associate it with poor hygiene. This false belief creates shame, isolation, and emotional distress for those living with HS, often preventing them from seeking the medical care and support they need. Breaking the stigma around HS is essential to promoting awareness, encouraging early diagnosis, and improving quality of life for individuals affected by the condition.

Here are key ways to challenge misconceptions and change the conversation about HS.

1. Educate Others About What HS Really Is

One of the most effective ways to break the stigma is by educating people about the true causes of HS. Because HS is not widely understood, many assume that it results from poor hygiene, obesity, or lifestyle choices, when in reality, HS is a genetic and immune system disorder.

✔ How to Educate Others:

Explain that HS is an auto-inflammatory disease, not an infection or result of poor cleanliness.
Use simple, relatable language, such as:
“HS is a chronic condition where the immune system overreacts, causing painful skin flare-ups. It has nothing to do with hygiene.”
Share trusted medical resources, such as those from the Hidradenitis Suppurativa Foundation or Mayo Clinic.

When more people understand the science behind HS, they are less likely to judge or spread misinformation.

2. Speak Openly About Your Experience (If You Feel Comfortable)

Stigma thrives in silence, and many people with HS hide their condition out of fear of judgment. However, opening up about HS—whether in personal conversations, social media, or support groups—can help normalize the condition and show others that they are not alone.

✔ How to Talk About HS:

Start with trusted friends or family members and explain your condition in a way that feels comfortable.
If you’re comfortable, share your story on social media or in HS support groups to spread awareness.
Remind people that speaking about HS is not seeking pity, but rather an effort to educate and advocate.

When more people talk about HS openly, it becomes less of a taboo topic, and stigma starts to fade.

3. Challenge Misinformation and Myths

Many well-meaning people unknowingly spread myths about HS, such as assuming it’s contagious, caused by poor hygiene, or a type of acne. Correcting these misconceptions helps change the way people view HS.

✔ How to Respond to Myths:

When someone says HS is caused by poor hygiene:
“Actually, HS is an inflammatory disease, and it has nothing to do with hygiene. Even people who are extremely clean still develop it.”
If someone suggests a ‘simple fix’ like better soap or diet:
“While diet and skincare can sometimes help manage symptoms, HS is a chronic condition that requires medical treatment.”

Correcting misinformation in a kind and patient way helps educate others without making them feel defensive.

4. Support HS Awareness Campaigns

Supporting awareness initiatives helps HS become more recognized in the medical community and general public. Many organizations work to increase research, improve treatment options, and reduce stigma.

✔ Ways to Get Involved:

Participate in HS Awareness Month (June) by sharing educational content.
Support or donate to organizations like the HS Foundation or HS research programs.
Sign petitions or advocate for better healthcare policies and insurance coverage for HS treatments.

When more people recognize HS as a legitimate medical condition, it leads to better treatment options and greater public understanding.

5. Encourage Early Diagnosis and Proper Medical Care

Many people with HS suffer in silence for years, not realizing that their symptoms require medical attention. Stigma and misinformation delay diagnoses, causing unnecessary pain and complications. Encouraging early diagnosis can help people get treatment sooner and manage symptoms more effectively.

✔ How to Promote Early Diagnosis:

If someone mentions symptoms like painful lumps or recurring abscesses, suggest they see a dermatologist familiar with HS.
Share your own experience with seeking medical care and treatment options.
Encourage healthcare providers to take HS seriously and provide compassionate care.

The more people seek early treatment, the better the medical community will understand and prioritize HS research and support.

Breaking the stigma of HS requires education, open conversations, challenging myths, and increasing awareness. HS is a medical condition, not a personal failing, and those living with it deserve understanding, respect, and proper care. By advocating for accurate information, better treatment options, and compassionate support, we can change the perception of HS and improve the lives of those affected by it.

Final Thoughts: HS Is Not Caused by Poor Hygiene

Hidradenitis Suppurativa (HS) is a chronic, inflammatory skin disease, not a result of poor hygiene. Despite the misconceptions and stigma surrounding HS, scientific research has confirmed that the condition is caused by genetic, immune system, and inflammatory factors, not by how often someone bathes or how clean they keep their skin. The painful abscesses, tunnels, and scarring associated with HS develop due to blocked hair follicles and an overactive immune response, not because of dirt, bacteria, or lack of personal care.

The hygiene myth is harmful because it creates shame, self-doubt, and social stigma for those living with HS. Many individuals feel judged, hesitant to seek medical care, or even blame themselves for a condition that is entirely beyond their control. This misinformation leads to delayed diagnoses, emotional distress, and social isolation, making an already painful condition even more difficult to live with.

Breaking this stigma is essential. Education, advocacy, and open conversations can help correct these false beliefs and ensure that people with HS receive compassion, understanding, and proper medical treatment. No one should feel ashamed of having a medical condition they did not cause. By spreading awareness and challenging the hygiene myth, we can work toward a world where HS is recognized for what it truly is—a serious autoimmune-related skin disease that deserves respect and attention, not blame.

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