How to Find HS Support Groups: Connect

by

Living with Hidradenitis Suppurativa (HS) presents unique challenges, both physical and emotional. The unpredictable nature of flares, chronic pain, and the social stigma associated with the condition can lead to feelings of isolation and frustration. Connecting with others who truly understand these experiences is not just beneficial; it’s often a crucial component of effective self-management and improved quality of life. This in-depth guide provides clear, actionable steps on how to find HS support groups and connect with the broader HS community, empowering you to build a robust network of understanding and shared strength.

The Indispensable Value of HS Support

Before diving into how to find support, it’s vital to grasp why it’s so important. Living with HS can feel incredibly isolating because it’s an often misunderstood and sometimes invisible illness. Support groups offer:

  • Emotional Validation: The relief of knowing you’re not alone and that others share similar struggles is immense. This validation can significantly reduce feelings of shame, anxiety, and depression.

  • Practical Advice and Coping Strategies: Members often share firsthand experiences with treatments, wound care, pain management techniques, dietary modifications, and navigating daily life with HS, offering insights a doctor might not provide. For example, a fellow patient might share a specific type of dressing that works best for a particular body area or a specific diet tweak that reduced their flares.

  • Reduced Stigma: Openly discussing HS in a safe environment helps dismantle the internal and external stigma, fostering self-acceptance and confidence.

  • Advocacy and Empowerment: Many support groups are linked to advocacy efforts, providing opportunities to contribute to raising awareness, funding research, and improving patient care.

  • Informed Decision-Making: Hearing diverse experiences with medications, surgeries, and lifestyle changes can help you ask more targeted questions of your healthcare providers and make more informed decisions about your treatment plan.

  • Sense of Community: Beyond practical advice, support groups offer genuine human connection, fostering friendships and a sense of belonging that extends beyond the condition itself.

Navigating the Digital Landscape: Online HS Support Groups and Communities

The internet offers the most accessible and diverse avenues for finding HS support. Virtual communities break down geographical barriers, allowing you to connect with thousands of individuals worldwide who share your journey.

Strategic Keyword Searches for Online Groups

Start your search with specific, targeted keywords on major search engines. Don’t just type “HS support groups.” Be more granular.

  • Actionable Example: Instead of “HS support,” try:
    • “Hidradenitis Suppurativa online forum”

    • “HS patient community”

    • “Virtual HS support meetings”

    • “Chronic HS patient groups”

    • “HS support for teens” (if applicable)

    • “HS support for caregivers” (if you’re a family member)

Exploring Dedicated HS Patient Organizations

Several reputable non-profit organizations are specifically dedicated to supporting the HS community. These organizations often host their own forums, online communities, or directories of support groups.

  • Actionable Example:
    1. HS Foundation: Visit their website and look for sections on “Patient Resources,” “Support,” or “Community.” They frequently have lists of affiliated support groups or direct links to their own online platforms.

    2. HS Connect: This patient-led non-profit is specifically designed to connect the HS community. Explore their “Online Community” section, which often features various “Community Circles” (e.g., HS Brotherhood, Real Talk for Teens, HS Parent Network) and links to external Facebook groups.

    3. Hope for HS: As a grassroots organization, Hope for HS often provides online meeting schedules and links to their Facebook pages, which serve as active online communities.

    4. International Association of Hidradenitis Suppurativa Network (IAHSN): Look for their “Stay Well” or “Connect with Others” sections, as they often host online support groups and advocacy programs.

Leveraging Social Media Platforms

Social media platforms, particularly Facebook, host numerous active and supportive HS communities. However, exercise caution and prioritize privacy settings.

  • Actionable Example:
    1. Facebook Groups: Use the search bar within Facebook and type in keywords like “Hidradenitis Suppurativa Support Group,” “HS Warriors,” or “Living with HS.”
      • Tip: Look for groups that are “Private” or “Secret” as they tend to offer a safer, more moderated environment for sensitive discussions. Public groups can attract unwanted attention or spam.

      • Verification: Before joining, check the group’s description, rules, and the activity level of its members. Look for groups moderated by reputable organizations or individuals with a clear understanding of HS.

      • Engagement: Start by reading posts and comments to get a feel for the group’s dynamic. When ready, introduce yourself and share a brief aspect of your journey. You might ask, “Has anyone had experience with [specific treatment]?” or “How do you manage fatigue with HS?”

    2. Reddit: Subreddits like r/Hidradenitis or r/HS are vibrant communities where users share experiences, ask questions, and offer support. These are often less formal than Facebook groups but can be incredibly informative.

      • Tip: Use the search function within the subreddit to find discussions on specific topics (e.g., “diet,” “scarring,” “pain relief”).
    3. Instagram/TikTok: While primarily visual, many HS advocates and patients share their stories and tips. Following these accounts can create a sense of connection and provide useful information, though direct group support is less common on these platforms.
      • Engagement: Engage with comments on posts from HS advocates or use relevant hashtags like #HidradenitisSuppurativa, #HSWarrior, or #HSAwareness to find and connect with others.

Specialized Online Forums and Apps

Beyond mainstream social media, niche health platforms and dedicated apps are emerging.

  • Actionable Example:
    1. MyHealthTeam (e.g., MyHSteam): These platforms are designed specifically for individuals with chronic conditions. They offer dedicated forums, Q&A sections, and opportunities to connect with others who have HS.

    2. Patient-Created Apps: Some apps, like “Papaya” (mentioned in search results), are created by HS patients for symptom tracking and can also include community features or links to support networks. Search your app store for “Hidradenitis Suppurativa” or “HS tracking” to discover such tools.

Discovering Local HS Support: In-Person Connections

While online communities offer widespread access, local in-person support groups provide a tangible, face-to-face connection that many find incredibly valuable.

Consulting Your Healthcare Provider

Your dermatologist or healthcare team is often the best initial resource for local support. They may know about existing groups or be willing to start one.

  • Actionable Example: During your next appointment, directly ask your dermatologist: “Are there any local Hidradenitis Suppurativa support groups in this area?” or “Do you know of any patient networks for HS that meet in person?” They might have flyers, contact information, or even a nurse or social worker who facilitates such groups.

Reaching Out to Patient Advocacy Organizations (Local Chapters)

Many national HS organizations have local chapters or ambassadors who organize regional meetings and events.

  • Actionable Example:
    1. Check Organization Websites: Visit the websites of organizations like the HS Foundation, HS Connect, or Hope for HS and look for sections titled “Local Chapters,” “Events,” or “Find a Group.” They often list contact information for regional representatives.

    2. Contact Directly: If you can’t find information for your specific area, email or call the national organization and inquire if there are any local initiatives or individuals who might be interested in forming a group. You might say, “I’m looking to connect with other HS patients in [Your City/State]. Do you have any resources or contacts for local groups or anyone interested in starting one?”

Community Health Centers and Hospitals

Some hospitals or community health centers run patient support programs for various chronic conditions.

  • Actionable Example:
    1. Call Patient Services: Contact the patient services or community outreach department of local hospitals or large dermatology clinics. Ask if they have support groups for chronic skin conditions or if they can point you to any resources for HS patients. For instance, “I’m looking for a support group for Hidradenitis Suppurativa. Do you offer any programs or know of any in the area?”

    2. Check Bulletin Boards: Sometimes, information about local support groups is posted on bulletin boards in waiting rooms of dermatology clinics or general practitioner offices.

Networking Through Existing Connections

Sometimes, the best connections come from unexpected places.

  • Actionable Example:
    1. Talk to Your Pharmacist: Pharmacists often interact with many patients with chronic conditions and might have overheard conversations or seen flyers about local groups.

    2. Local Disease-Specific Events: Keep an eye out for local health fairs, awareness walks, or seminars focused on dermatological conditions. While not exclusively for HS, these events can be excellent opportunities to meet other patients or advocates who might know about local HS initiatives.

    3. Word-of-Mouth: Don’t hesitate to mention your interest in finding a support group to trusted friends and family. They might encounter someone who also has HS or knows of a group.

Maximizing Your Support Group Experience: Practical Tips for Engagement

Finding a group is only the first step. To truly benefit, active and thoughtful engagement is key.

Preparing for Your First Interaction (Online or In-Person)

  • Start Small (Listen First): Don’t feel pressured to share your entire HS story immediately. In online groups, observe the types of discussions. In person, listen more than you speak initially. This helps you understand the group’s dynamic.

  • Identify Your Goals: Before joining, consider what you hope to gain. Are you seeking emotional support, practical advice, or information on new treatments? Having a clear purpose can guide your participation.

  • Prepare a Brief Introduction: For your first post or in-person meeting, have a simple introduction ready. Something like, “Hi everyone, I’m [Your Name], and I’ve been living with HS for [X years]. I’m looking forward to connecting with others who understand this journey.”

Active Participation and Contribution

  • Share Your Experiences (When Ready): Your unique journey with HS can provide valuable insights for others. Sharing your struggles and successes creates a sense of camaraderie and helps others feel less alone. For instance, “I’ve found that wearing bamboo clothing really helps with friction. Has anyone else tried this?”

  • Ask Specific Questions: Instead of vague inquiries, pose direct questions that invite actionable responses.

    • Vague: “Does anyone feel pain?”

    • Specific: “How do you manage the sharp, shooting pain during a flare in your groin area, especially when walking?”

  • Offer Empathy and Encouragement: Support groups are a two-way street. Respond to others’ posts and share words of encouragement. A simple “I understand what you’re going through, you’re not alone” can make a significant difference.

  • Be Respectful and Non-Judgmental: Everyone’s HS journey is different. What works for one person may not work for another. Maintain a respectful and empathetic tone, even when opinions differ.

  • Participate in Discussions: If an online group has specific discussion threads or an in-person group has a topic for the meeting, actively contribute your thoughts and experiences. For example, if the topic is diet, share specific foods you’ve found helpful or harmful.

Safety and Privacy Considerations

  • Protect Personal Information: Be mindful of sharing overly sensitive personal details, especially in larger, less moderated online groups. Never share your full address, financial information, or medical records.

  • Verify Information (Online): While support groups offer invaluable peer advice, always cross-reference medical information with your healthcare provider. What works for one person may not be appropriate or safe for you.

  • Trust Your Gut: If a group or individual makes you feel uncomfortable, or if the advice seems unsafe or unethical, disengage. Prioritize your well-being.

  • Report Inappropriate Content: In online forums, report any abusive, discriminatory, or harmful content to the moderators.

Cultivating a Sustainable Support Network

Finding a support group is not a one-time event; it’s about building a sustainable network that evolves with your needs.

Beyond Formal Groups: One-on-One Connections

  • Nurture Individual Relationships: Within a support group, you might connect with individuals on a deeper level. Consider reaching out for one-on-one conversations, virtual coffee chats, or even in-person meetups if geographically feasible.

  • Mentor and Be Mentored: As you gain experience, you might find yourself in a position to mentor newer members, and equally, you can learn from those who have managed HS for longer periods. This exchange enriches the entire community.

Staying Connected During Lulls

  • Check-Ins: Even if you’re not actively flaring or seeking advice, periodically check in with your support group. A simple “Thinking of you all” or sharing a small victory can maintain connections.

  • Participate in Awareness Initiatives: Many HS groups organize awareness events, fundraisers, or advocacy campaigns. Participating in these activities can strengthen your bond with the community and contribute to a larger cause.

Adapting as Your Needs Change

  • Re-evaluate Periodically: Your needs for support might change as your HS progresses, your treatment plan shifts, or your personal life evolves. Periodically assess if your current support groups still meet your needs, and don’t hesitate to explore new ones if necessary.

  • Consider a Mix of Support Types: A combination of online, local, and even professional (therapy) support can provide a well-rounded safety net. For instance, you might use an online forum for daily tips, attend a local meeting monthly for face-to-face interaction, and see a therapist for mental health coping strategies.

Conclusion

Finding and connecting with HS support groups is a proactive and empowering step in managing Hidradenitis Suppurativa. It transforms a solitary struggle into a shared journey, providing not only practical advice and coping mechanisms but also the invaluable comfort of human connection and understanding. By strategically navigating online platforms, leveraging advocacy organizations, and exploring local resources, you can build a robust support network that addresses the multifaceted challenges of living with HS. Remember, you are not defined by your condition, and a strong community can be your greatest ally in thriving despite it. Embrace the power of connection and discover the profound impact of shared experience on your path to wellness.