When a loved one is living with Hidradenitis Suppurativa (HS), it can be difficult to know how to support them. HS is a chronic, painful, and often misunderstood skin condition that affects daily life in many ways. It causes recurrent abscesses, painful nodules, and deep skin inflammation, often leading to scarring, limited mobility, and emotional distress. Because flare-ups can be unpredictable and painful, your family member may struggle with physical discomfort, social anxiety, and frustration—all of which can take a toll on their well-being.
As a family member, your understanding, patience, and support can make a world of difference. Whether they need help managing daily tasks, emotional reassurance, or assistance in navigating medical treatments, being there for them in meaningful and practical ways can improve their quality of life. The key is to educate yourself about HS, listen to their needs, and offer the right kind of support without overwhelming them.
In this article, we’ll explore ways you can help a loved one with HS, including emotional support, assisting with medical care, making lifestyle adjustments together, and advocating for their needs. Even small gestures—such as learning about their condition, respecting their pain levels, or accompanying them to doctor’s appointments—can strengthen your relationship and provide comfort. By taking the time to understand HS and its impact, you can be a crucial source of encouragement, helping your loved one feel less alone, more supported, and better equipped to manage their condition.
What Do I Need to Know About HS?
If you have a family member with Hidradenitis Suppurativa (HS), one of the best ways to support them is by understanding their condition. HS is a chronic, inflammatory skin disease that causes painful, recurring nodules, abscesses, and tunnels (sinus tracts) under the skin. It most commonly affects areas where skin rubs together, such as the armpits, groin, buttocks, thighs, and under the breasts. Over time, these lesions can rupture, drain fluid, and leave behind scar tissue that may impact movement and daily comfort.
Key Facts About HS:
✅ HS is Not Contagious – You cannot catch HS from someone else. It is an inflammatory condition, not an infection.
✅ HS is Not Caused by Poor Hygiene – One of the biggest misconceptions is that HS is due to uncleanliness. In reality, it is an autoimmune-related condition, meaning the body’s immune system mistakenly causes excessive inflammation in the skin.
✅ HS is a Chronic Disease – There is no cure, but there are treatments that help manage symptoms and reduce flare-ups. Some people experience periods of remission, while others deal with frequent flare-ups.
✅ It Varies from Person to Person – Some individuals have mild symptoms (occasional flare-ups), while others experience severe and debilitating cases that require medical intervention.
✅ It Can Be Emotionally Challenging – Living with a painful and visible skin condition can lead to anxiety, depression, and self-consciousness. Many people with HS struggle with low self-esteem, body image issues, and social withdrawal.
Understanding HS means recognizing that your loved one may experience both physical pain and emotional distress. They may have days when they feel fine and others when they need extra rest, support, or medical attention. By being patient, nonjudgmental, and informed, you can play an important role in helping them navigate life with HS.
How Can I Help Emotionally?
Supporting a family member with Hidradenitis Suppurativa (HS) goes beyond just understanding their physical symptoms—it also means offering emotional support. HS is not just a skin condition; it is a chronic illness that can take a serious toll on mental health. Many individuals with HS experience frustration, anxiety, depression, and social isolation due to their condition. As a loved one, you can make a significant difference in their emotional well-being by being patient, empathetic, and supportive.
1. Listen Without Judgment
One of the most powerful things you can do is simply listen. People with HS often feel misunderstood or dismissed, especially when others minimize their pain or assume they are exaggerating their symptoms. Let them talk openly about their struggles, fears, and frustrations without offering unsolicited advice or solutions. Sometimes, just knowing someone is there to listen can be incredibly reassuring.
2. Validate Their Feelings
HS can lead to feelings of embarrassment, shame, and frustration. Your loved one might struggle with self-esteem and body image issues due to scarring and flare-ups. Instead of dismissing their concerns by saying, “It’s not that bad”, try acknowledging their experience:
✔️ “I know this is really tough for you, and I’m here to support you.”
✔️ “It makes sense that you’re feeling this way. You’re dealing with a lot.”
Validation helps them feel heard, understood, and less alone.
3. Encourage (But Don’t Push) Social Interaction
HS can make people withdraw from social activities out of fear of judgment or discomfort. If your loved one is avoiding social events, encourage them gently, but don’t pressure them. Offer alternatives like low-key gatherings, movie nights at home, or online communities where they can connect with others who understand HS.
4. Be Patient During Difficult Days
There will be days when your loved one is in severe pain or emotionally drained. They may cancel plans, seem irritable, or need extra rest. Instead of taking it personally, recognize that their frustration is with HS, not with you. Offering simple gestures—like bringing them a favorite snack, helping with household chores, or just sitting with them—can make them feel supported.
5. Learn About HS Together
Educating yourself about HS shows your loved one that you care and want to understand their experience. Read about treatments, triggers, and self-care strategies, and ask them how they manage their symptoms. This not only helps you support them better, but it also creates a stronger bond between you.
6. Offer to Help with Medical Appointments
Navigating HS treatments can be overwhelming, especially when dealing with insurance, prescriptions, and doctor visits. Offer to help by:
✔️ Accompanying them to appointments for support.
✔️ Helping them keep track of medications and treatments.
✔️ Taking notes during doctor visits so they don’t feel overwhelmed.
7. Remind Them They Are More Than Their Condition
HS can make people feel defined by their illness, especially when flare-ups are severe. Remind your loved one that they are valued and loved for who they are beyond HS. Compliment their strength, talents, and personality, and help them focus on things they enjoy.
Online Resources for People with Hidradenitis Suppurativa (HS)
For individuals living with Hidradenitis Suppurativa (HS), finding reliable information and a supportive community can make a huge difference in managing the condition. Below are trusted online resources that provide medical information, support groups, and advocacy for HS patients.
1. Medical & Educational Resources
These websites provide reliable medical information, treatment guidelines, and research updates on HS.
✅ Hidradenitis Suppurativa Foundation (HSF) – www.hs-foundation.org
🔹 A nonprofit organization dedicated to HS research, education, and advocacy. Provides a directory of HS specialists and treatment options.
✅ Hope for HS – www.hopeforhs.org
🔹 A patient-led advocacy group that offers in-person and virtual support groups, education resources, and information on clinical trials.
✅ American Academy of Dermatology (AAD) – www.aad.org
🔹 Offers medical explanations, treatment recommendations, and dermatologist-approved guidance for managing HS.
✅ National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) – www.niams.nih.gov
🔹 A government-funded site with scientific research, treatment guidelines, and ongoing studies about HS.
✅ HS Doctors – https://hidradenitissuppurativadoctors.com/
🔹 A site with general HS information and connections to doctors and support groups
2. Support Groups & Online Communities
Joining an HS support group can provide emotional support, shared experiences, and practical coping tips.
✅ HS Connect – www.hsconnect.org
🔹 Offers online support groups, educational resources, and advocacy efforts for HS patients.
✅ Reddit – r/Hidradenitis – www.reddit.com/r/Hidradenitis
🔹 A large online community where people with HS share treatment experiences, flare-up management tips, and emotional support.
✅ Facebook Support Groups
🔹 Search for “Hidradenitis Suppurativa Support” or “HS Warriors” on Facebook to find private, moderated support groups. These groups provide personal experiences, advice, and encouragement.
✅ Inspire HS Community – www.inspire.com
🔹 A patient-driven forum for discussing treatments, daily challenges, and personal experiences with HS.
3. Clinical Trials & Research Opportunities
For those interested in participating in HS research or learning about new treatments, these resources are helpful.
✅ ClinicalTrials.gov – www.clinicaltrials.gov
🔹 Search “Hidradenitis Suppurativa” to find ongoing clinical trials testing new medications and therapies.
✅ HS Foundation Research Updates – www.hs-foundation.org/research
🔹 Provides updates on current research, grants, and advancements in HS treatment.
Final Thoughts on Helping a Family Member with HS
Supporting a family member with Hidradenitis Suppurativa (HS) requires understanding, patience, and empathy. This chronic condition can be physically painful and emotionally draining, making family support an essential part of their well-being. While you may not be able to take away their pain, your compassion and willingness to learn can make a meaningful difference in their daily life.
One of the most important ways to help is by educating yourself about HS. Understanding that HS is not contagious, not caused by poor hygiene, and has no cure allows you to offer informed support rather than misguided advice. Acknowledging their condition without judgment can help them feel validated and respected, reducing the stigma they may face in other areas of life.
Emotional support is just as important as physical assistance. Chronic pain, visible lesions, and frequent flare-ups can lead to low self-esteem, anxiety, and depression. Be patient on their difficult days, and offer encouragement when they need it. Small gestures—like listening to their frustrations, helping with daily tasks, or accompanying them to doctor’s appointments—can show that they are not alone in this journey.
Practical help also plays a big role. Encouraging healthy lifestyle habits, such as stress management, gentle skincare routines, and avoiding HS triggers, can help them maintain better symptom control. If they are struggling with treatment options, help them research medical resources, online support groups, and potential dermatologists who specialize in HS.
Most importantly, remind them that they are more than their condition. HS may be a part of their life, but it does not define them. Your continued love, patience, and advocacy can help them navigate the challenges of HS with confidence and strength, knowing they have someone in their corner every step of the way.