How to Discuss Hidradenitis Suppurativa (HS) with Family: Opening Lines for Understanding and Support

Hidradenitis Suppurativa (HS) is more than just a skin condition; it’s a chronic, often debilitating inflammatory disease that can significantly impact a person’s physical and emotional well-being. For those living with HS, the journey often involves navigating pain, discomfort, and the emotional toll of visible lesions and scarring. Yet, one of the most challenging aspects can be discussing the condition with family members. The stigma, lack of awareness, and personal discomfort can make these conversations incredibly difficult, often leading to isolation and misunderstanding.

This comprehensive guide is designed to empower individuals with HS to open crucial lines of communication with their families. We’ll delve into the nuances of these conversations, offering actionable strategies, concrete examples, and a roadmap for fostering empathy, education, and unwavering support. Our goal is to transform apprehension into effective dialogue, paving the way for a more understanding and supportive home environment.

The Foundation of Dialogue: Why Discussing HS with Family Matters

Before we dive into the “how,” let’s solidify the “why.” Discussing HS with your family isn’t just about sharing information; it’s about building a robust support system, alleviating personal burden, and ensuring your loved ones understand the true impact of your condition.

Breaking Down Isolation and Stigma

Living with a chronic illness can be incredibly isolating, especially when it involves visible symptoms or areas of the body that are often considered private. Many individuals with HS feel a profound sense of shame or embarrassment, leading them to hide their condition from even their closest family members. This secrecy, while seemingly protective, can exacerbate feelings of loneliness and prevent access to vital emotional support. Opening up to family dismantles this wall of isolation, allowing you to be seen and understood, not just as someone with HS, but as a whole person deserving of compassion.

Fostering Empathy and Understanding

For family members without direct experience of HS, it can be challenging to grasp the true extent of the pain, discomfort, and emotional distress it causes. They might unknowingly offer unhelpful advice, minimize your symptoms, or misunderstand your need for rest or specific accommodations. An open discussion creates a pathway to empathy. When family members understand the chronic nature of the disease, the unpredictable flare-ups, and the daily challenges you face, their responses shift from judgment to genuine concern and support.

Securing Practical and Emotional Support

HS can impact various aspects of daily life, from physical activity and clothing choices to social interactions and mental health. Having your family aware of your condition allows them to offer practical support, whether it’s understanding why you might need to decline certain activities, helping with household tasks during a flare-up, or simply offering a listening ear. Emotionally, knowing your family understands and accepts your condition can significantly reduce stress and anxiety, contributing to better overall well-being.

Advocating for Yourself (and Them for You)

When your family understands HS, they become unwitting advocates. They can help you explain your condition to others (if you choose), understand dietary considerations, or even support you in medical appointments. This shared understanding reduces the burden of constant explanation and allows you to focus more energy on managing your health.

Strategic Preparation: Laying the Groundwork for Successful Conversations

Approaching a conversation about HS requires thoughtful preparation. Rushing into it without a plan can lead to misunderstandings, frustration, or even emotional distress for all parties involved.

1. Educate Yourself Thoroughly

You are the primary educator for your family. Before you even utter a word, ensure you have a solid understanding of HS yourself. This includes:

What it is: A chronic inflammatory skin condition characterized by painful lumps, abscesses, and tunnels (sinus tracts) that typically form in areas where skin rubs together (armpits, groin, buttocks, under the breasts).
What it isn’t: It’s not contagious. It’s not caused by poor hygiene. It’s not just “pimples” or “boils.”
Its causes (and unknowns): While the exact cause is unknown, it involves a complex interplay of genetics, hormones, immune system dysfunction, and environmental factors.
Its symptoms: Pain, swelling, redness, pus drainage, scarring, limited mobility, fatigue, depression, anxiety.
Its variability: HS manifests differently in everyone. Emphasize that your experience might not align with what they read or hear elsewhere.
Treatment options: Discuss the range of treatments available, from topical creams and oral medications to biologics and surgery. Explain that there’s no “cure” but management strategies exist.

Concrete Example: Instead of saying, “It’s a skin thing,” say, “HS is a chronic inflammatory skin disease where painful lumps and tunnels form, usually in areas like my armpits or groin. It’s not contagious, and it’s not because I’m unclean. Doctors aren’t sure exactly what causes it, but it’s a mix of genes and how my body reacts.”

2. Choose the Right Time and Place

Timing and environment are crucial. Avoid discussing HS during stressful periods, while rushing, or in a public setting.

When to talk: When you feel calm, prepared, and have ample time. Choose a moment when your family member is also relaxed and able to give you their full attention.
Where to talk: A private, comfortable setting where you won’t be interrupted. This could be your living room, a quiet park bench, or during a leisurely walk. Avoid highly emotional or high-stress environments.

Concrete Example: “Mom, Dad, I was hoping we could sit down and talk for a bit when you have some time. Perhaps after dinner tonight, when things are quiet?”

3. Identify Your Core Message and Goals

What do you want your family to take away from this conversation? What specific support do you need? Be clear about your objectives.

Are you seeking emotional support? “I just need you to listen and understand that some days are harder than others.”
Do you need practical help? “When I have a flare-up, it would be really helpful if you could help with [specific task, e.g., groceries, laundry].”
Are you trying to explain why you’re cancelling plans? “Sometimes my HS makes it hard to be out and about, and I might need to cancel last minute. It’s not because I don’t want to be with you.”
Do you simply want to inform them? “I want you to know what I’m going through so you can understand.”

Concrete Example: “My main goal in telling you about my HS is so you understand why I sometimes feel tired or need to rest, and so you know what’s really going on with my health.”

4. Anticipate Questions and Reactions

Family members will likely have questions, and their initial reactions might range from concern to confusion, or even denial. Prepare for these possibilities.

Common questions: “Is it contagious?” “Did you do something to get it?” “Can’t you just put cream on it?” “Will it ever go away?” “Are you taking care of yourself?”
Potential reactions: Tears, shock, disbelief, immediate advice-giving, downplaying the severity, focusing on “fixing” it.

Concrete Example: Prepare a concise answer for “Is it contagious?” like, “No, absolutely not. It’s an internal inflammatory process, not something you can catch from me.” For advice-giving, “I appreciate your concern, and I know you want to help, but right now, I really just need you to listen and understand. I’m working closely with my doctors on treatment.”

5. Practice What You’ll Say

Rehearse your opening lines and key talking points. This doesn’t mean memorizing a script, but rather familiarizing yourself with the language you’ll use to articulate your experience. You can practice in front of a mirror or with a trusted friend.

Concrete Example: “I’ve been dealing with something for a while now that I need to share with you. It’s called Hidradenitis Suppurativa, or HS for short. It’s a chronic skin condition that causes painful lumps and abscesses in certain areas of my body. It’s not contagious, and it’s not due to hygiene. It’s something I’ve been managing, and I wanted you to understand more about it.”

Opening the Lines: Initiating the Conversation

The initial approach sets the tone for the entire discussion. Be direct, but empathetic.

1. The Direct and Honest Approach

For many, the most effective way to begin is by being straightforward.

Example Phrases:

“There’s something important I need to talk to you about regarding my health.”
“I’ve been dealing with a chronic health condition called Hidradenitis Suppurativa, and I want to share more about it with you.”
“I wanted to let you know what’s been going on with me lately. I’ve been diagnosed with HS, and it affects me in several ways.”

Concrete Example: “Mom, Dad, I need to be open with you about something that’s been affecting my health. I have a condition called Hidradenitis Suppurativa. It’s a long-term skin condition that causes painful sores and bumps, especially in areas where skin rubs together.”

2. The “This Explains a Lot” Approach

If you’ve been experiencing symptoms or changes in behavior that your family might have noticed, this approach can provide context.

Example Phrases:

“You might have noticed that I’ve been [tired/withdrawn/in pain] lately. There’s a reason for that, and I want to explain it to you.”
“Remember how I sometimes cancel plans last minute, or seem uncomfortable? I want to explain why that happens.”

Concrete Example: “You might have noticed that I’ve been more tired or sometimes a bit irritable lately, or that I’ve been avoiding certain activities. I wanted to explain that it’s related to a chronic condition I have called Hidradenitis Suppurativa. It causes painful flare-ups, and that can really impact my energy and how I feel.”

3. The “I Need Your Support” Approach

If your primary goal is to seek support, lead with that need.

Example Phrases:

“I’m going through something challenging with my health, and I really need your understanding and support.”
“It’s been difficult managing my HS, and I wanted to talk to you about it so you can understand what I’m dealing with and how you might be able to help.”

Concrete Example: “I’m facing some real challenges with my health right now, and I really need your support. I have a condition called HS, and it can be quite painful and debilitating at times. I wanted to explain more about it so you can understand what I’m going through.”

Educating Your Family: Demystifying HS

Once you’ve opened the conversation, the next crucial step is to educate your family about HS in an accessible, understandable way. Avoid medical jargon where possible, or explain it clearly.

1. Define HS Simply and Clearly

Start with a foundational explanation that dispels common misconceptions.

Avoid: “It’s an autoimmune disease involving follicular occlusion and apocrine gland inflammation.”
Instead: “HS is a chronic skin condition where hair follicles become blocked and inflamed, leading to painful lumps, boils, and sometimes tunnels under the skin. It’s not an infection, and it’s not from being unclean.”

Concrete Example: “Think of it like this: your skin has little pockets called hair follicles. With HS, these follicles get blocked, and then they become very inflamed and painful. It’s not like acne, and it’s not contagious – you can’t catch it from me.”

2. Explain the Symptoms You Experience (and Their Impact)

Personalize the explanation by focusing on your symptoms and how they affect your daily life.

Pain: “The lumps are often incredibly painful, sometimes feeling like deep bruises or burning. It’s not just a superficial pain.”
Location: “They typically appear in areas where skin rubs together, like my armpits, groin, or under my breasts. This makes everyday movements, even walking or sitting, very uncomfortable.”
Flare-ups: “It’s a chronic condition, meaning it comes and goes. I have periods of flare-ups where the pain and inflammation are much worse, and then periods where it’s more manageable.”
Drainage: “Sometimes, these lumps can burst and drain pus, which can be messy and embarrassing. This is why I might need to change bandages frequently.”
Scarring: “Over time, the repeated healing can lead to thick scars, which can restrict movement and be disfiguring.”
Systemic effects: “Beyond the skin, HS can also cause extreme fatigue and sometimes even affect my mood, leading to feelings of sadness or anxiety.”

Concrete Example: “When I have a flare-up, the pain can be so intense that it’s hard to sleep or even wear certain clothes. Sometimes, the lumps can open up and drain, which is why I might need to change my clothes or bandages often. It’s not just a physical pain; it can be incredibly draining emotionally too, leaving me feeling exhausted.”

3. Emphasize What HS IS NOT

Repeatedly clarify misconceptions to prevent them from taking root.

NOT Contagious: “I want to be absolutely clear: HS is not contagious. You cannot catch it from me through touch, sharing items, or anything else. It’s an internal issue with my immune system and hair follicles.”
NOT Due to Poor Hygiene: “It’s also not caused by being unclean or not showering enough. In fact, aggressive scrubbing can even make it worse. It’s a medical condition, not a hygiene problem.”
NOT Just “Pimples” or “Boils”: “These aren’t just regular pimples. They are deep, painful lesions that can form tunnels under the skin and cause significant scarring.”
NOT a Sign of Something You Did Wrong: “This isn’t something I did to myself. It’s a complex medical condition, and doctors don’t fully understand why some people get it and others don’t. Please don’t blame me or think I could have prevented it.”

Concrete Example: “I know it might look like boils or bad acne, but it’s really different. It’s a chronic disease, and it’s crucial to understand that it’s not because of anything I did wrong or because I’m not clean. You absolutely cannot catch it from me.”

4. Discuss the Impact on Your Life

Help your family connect the dots between your condition and your behavior or limitations.

Physical Limitations: “Sometimes, the pain and inflammation make it difficult to do things like lift my arms, walk long distances, or sit comfortably for extended periods.”
Emotional Toll: “Living with chronic pain and visible lesions can be really tough on my mental health. I might feel more irritable, anxious, or depressed at times. This is part of the disease, not a personal failing.”
Social Impact: “I might decline social invitations because I’m in too much pain, or I might be self-conscious about my skin. Please understand it’s not that I don’t want to spend time with you.”
Fatigue: “HS can cause extreme fatigue, even on days when I haven’t done much. It’s not just ‘being tired’; it’s a deep exhaustion that can be hard to push through.”

Concrete Example: “You might wonder why I sometimes seem withdrawn or cancel plans. It’s often because I’m in significant pain, or I’m just utterly exhausted from battling the inflammation. It really impacts my energy levels and makes it hard to do normal things that others might take for granted, like even putting on certain clothes or being active.”

5. Explain Treatment and Management

Briefly touch upon how HS is managed, emphasizing that there’s no “cure” but effective treatments.

No Cure, But Management: “There isn’t a cure for HS yet, but there are many treatments that help manage the symptoms and prevent new flare-ups. I’m working closely with my dermatologist.”
Range of Treatments: “Treatments can include things like special washes, creams, oral medications, injections (like biologics), and sometimes even surgery to remove affected areas.”
Ongoing Process: “It’s an ongoing journey of trying to find what works best for me, and sometimes it takes time to see results.”

Concrete Example: “My doctors and I are working on a treatment plan. There’s no cure for HS right now, but there are many things that can help manage it, like medications and sometimes minor procedures. It’s a continuous process of figuring out what works best for my body.”

Fostering Support: How Family Can Help

Transition from education to outlining actionable ways your family can provide support. Be specific and realistic.

1. Listen Without Judgment

This is perhaps the most important form of support. Emphasize the need for active, empathetic listening.

What to say: “The most helpful thing you can do is just listen when I talk about it, without trying to fix it or offer quick solutions. Sometimes, I just need to vent or share what I’m going through.”
What not to say (for them): Avoid phrases like, “Have you tried [insert unhelpful advice]?” or “It can’t be that bad.”

Concrete Example: “Sometimes, when I’m in pain or feeling overwhelmed by my HS, I just need someone to listen. I’m not always looking for solutions or advice, just to feel heard and understood.”

2. Practice Empathy and Validation

Encourage them to acknowledge your pain and experience.

What to say: “It means a lot when you acknowledge what I’m going through, even if you can’t fully understand it. Simple phrases like ‘That sounds really tough’ or ‘I’m sorry you’re going through this’ are incredibly comforting.”
What not to say (for them): “Everyone has aches and pains,” or “Just tough it out.”

Concrete Example: “Knowing that you understand it’s difficult for me makes a huge difference. Just saying something like, ‘I can see you’re in pain, that must be really hard,’ helps more than you know.”

3. Respect Your Boundaries and Needs

Explain that your needs may fluctuate and that you might need to say “no” or rest more often.

What to say: “There will be days when my HS makes it hard for me to do things. I might need to cancel plans, rest more, or avoid certain activities. Please try to understand that this isn’t personal; it’s my body telling me what it needs.”
Practical examples: “If I say I’m too tired to go out, it’s not because I don’t want to spend time with you, but because my body genuinely can’t handle it right then.” “Please don’t pressure me to wear clothes that are uncomfortable or irritate my skin.”

Concrete Example: “Sometimes, my HS flares up and I might not be able to do everything I usually do, like go for a long walk or stay out late. Please understand that it’s my body telling me it needs rest, and it’s not a reflection of how much I want to be with you.”

4. Offer Practical Support (When Appropriate)

Suggest specific ways they can help, rather than a vague “How can I help?”

During flare-ups: “If I’m having a bad flare-up, maybe you could help with [e.g., picking up groceries, doing a load of laundry, cooking dinner].”
Transportation: “Sometimes, sitting in a car for a long time can be painful. If we’re going somewhere far, maybe you could drive, or we could carpool?”
Understanding medical appointments: “My appointments can be frequent. Understanding that I’ll be out for those is helpful.”
Researching (with caution): “If you want to learn more, I can direct you to some reliable resources [e.g., specific HS foundation websites]. Please avoid just Googling random things, as there’s a lot of misinformation out there.”

Concrete Example: “When I’m having a painful day, little things make a big difference. For example, if you’re going to the store, asking if I need anything would be a huge help. Or if you could just help with [specific chore], it would take a lot of pressure off me.”

5. Be Patient and Compassionate

Reinforce that this is a learning process for everyone.

What to say: “This is a lot of information, and it might take time to fully grasp. Please be patient with me, and with yourself, as we navigate this together.”
What not to say (for them): “Get over it,” or “Why are you still talking about this?”

Concrete Example: “I know this is a lot to take in, and I don’t expect you to understand everything overnight. Just knowing that you’re willing to learn and be patient with me as I manage this means the world.”

Navigating Challenges: Addressing Potential Difficulties

Even with the best intentions, challenging moments can arise. Prepare for these and have strategies in place.

1. Dealing with Unsolicited Advice

This is a common frustration for individuals with chronic illnesses.

Strategy: Validate their intent, then redirect.
Response: “I know you’re trying to help, and I appreciate your concern, but I’m already working closely with my doctors on a treatment plan. What I really need right now is [e.g., your listening ear, understanding].”
Firm but kind: “I’ve already researched many options, and my medical team is guiding my treatment. I’m focusing on their advice.”

Concrete Example: If a family member suggests a questionable “cure” they saw online: “Thanks for thinking of me and wanting to help, but I’m really relying on the advice of my dermatologist, who specializes in HS. It’s a complex condition, and many things that seem promising aren’t effective or could even be harmful. Right now, what helps most is your understanding.”

2. Managing Minimization or Dismissal

When family members downplay your pain or the severity of your condition.

Strategy: Reiterate the impact, using “I” statements.
Response: “I understand it might be hard to imagine, but for me, the pain is [describe severity, e.g., constant/debilitating]. It genuinely impacts my ability to [specific activity].”
Use analogies (if appropriate): “Imagine having a deep, painful boil that never fully heals, constantly rubbing against your clothes and making every movement hurt. That’s a bit like what some days are like.”

Concrete Example: If a family member says, “It’s just skin, it can’t be that bad”: “When you say that, it makes me feel unheard. While it’s on my skin, the inflammation goes much deeper and causes significant pain that affects my sleep, my energy, and my ability to do everyday things. It’s more than just a surface issue.”

3. Handling Blame or Guilt

If family members (or you) feel blame regarding genetics or lifestyle.

Strategy: Reiterate that it’s a complex medical condition, not anyone’s fault.
Response: “HS is complex, and nobody is to blame for it. It’s not genetic in the sense that anyone ‘gave’ it to me; it’s a predisposition. Focusing on blame isn’t helpful; focusing on understanding and support is.”

Concrete Example: If a parent expresses guilt: “Mom, Dad, please don’t feel guilty. This isn’t anyone’s fault. It’s a medical condition that unfortunately affects some people, and it’s not something you could have prevented or passed on. What matters now is how we move forward.”

4. When Family Members Are Overly Anxious or Worried

Sometimes family members become overly concerned, which can be its own burden.

Strategy: Reassure them about your medical care and self-management.
Response: “I know you’re worried, and I appreciate your care. I’m working very closely with a great team of doctors, and we have a plan in place. I’m doing everything I can to manage it, and I’ll keep you updated.”

Concrete Example: “I know you’re concerned, and I truly appreciate that. But please know that I have a fantastic medical team, and I’m actively managing my condition. I’ll let you know if I need help, but worrying too much isn’t necessary. Your emotional support is what I need most.”

Maintaining Open Lines: Ongoing Communication

A single conversation is rarely enough. HS is chronic, and so too should be the dialogue with your family.

1. Regular Check-ins

Periodically revisit the topic, especially if there are changes in your condition or treatment.

Informal moments: “Just wanted to let you know I had a good appointment with my dermatologist today.” or “My HS has been a bit challenging this week.”
Scheduled discussions: If needed, “Could we chat briefly about my health later? Something has come up with my HS.”

Concrete Example: “Just a quick update – my HS has been a bit more active this past week, so I might be taking it a bit easier. Thanks for understanding.”

2. Share Reputable Resources (If They Ask)

If your family expresses genuine interest in learning more, direct them to trusted sources.

Reliable organizations: The HS Foundation, American Academy of Dermatology, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).
Avoid: Social media forums (unless carefully curated), personal blogs that lack medical backing, or sensationalized news articles.

Concrete Example: “If you’d like to read more about HS from a reliable source, I can send you a link to the HS Foundation website. They have a lot of good, accurate information there.”

3. Celebrate Small Victories

Share positive news, no matter how small. This helps reinforce the idea that there are ups and downs, and that progress is possible.

“My new medication seems to be helping with the pain.”
“I had a really good day with my skin today, and it felt great to be able to [do activity].”

Concrete Example: “I had a really good day with my HS today – the pain was much lower than usual, and I even managed to go for a short walk! It’s nice to have these better days.”

4. Be Patient with Them (and Yourself)

Learning about a chronic illness takes time. Some family members might grasp it quickly, others slowly. There will be good days and bad days for everyone involved.

Self-compassion: Recognize that having these conversations is emotionally taxing. Give yourself grace.
Their learning curve: Understand that they might not always say the “right” thing, but their intent might be good.

Concrete Example: “I know it’s a lot to process, and it’s okay if you don’t always know what to say. We’re all learning here.”

Conclusion: A Journey of Shared Understanding

Discussing Hidradenitis Suppurativa with your family is a profound act of self-advocacy and a cornerstone of building a robust support system. It’s a journey, not a single destination. By approaching these conversations with careful preparation, clear communication, and unwavering patience, you can transform a source of personal isolation into an opportunity for shared understanding, empathy, and invaluable support.

Remember, your health journey is uniquely yours, but it doesn’t have to be walked alone. Opening these lines of communication with your family is an investment in your well-being, fostering a home environment where you feel seen, heard, and truly supported as you navigate life with HS. The strength you gain from this shared understanding will empower you not only in managing your condition but in living a fuller, more connected life.