EDS-Related Support Groups

The Value of Support Groups for Chronic Illness: Finding Community with Others with EDS

Living with Ehlers-Danlos Syndrome (EDS) can feel isolating, especially when dealing with complex symptoms that others may not understand. Support groups for chronic illnesses like EDS provide a vital space for patients to connect, share experiences, and find emotional support. These groups offer several key benefits:

1. Emotional Support: Support groups create a sense of belonging, reducing the feeling of isolation by connecting individuals facing similar challenges. Sharing personal stories helps foster empathy and provides a safe outlet for expressing emotions.
2. Practical Advice: Members exchange valuable tips on managing symptoms, navigating healthcare, and daily living with EDS. This shared knowledge can lead to practical solutions that improve quality of life.
3. Validation: Hearing from others who experience the same struggles reinforces that you are not alone. It helps validate the emotional and physical hardships of living with a chronic condition.
4. Community: Support groups build lasting relationships that go beyond diagnosis. Whether online or in-person, they foster camaraderie and a strong sense of community.

How to Find Support Groups for EDS

• EDS Society: The Ehlers-Danlos Society offers both virtual and local support groups for patients and caregivers. Check their website for resources and connections.
• Social Media: Facebook and Reddit host active EDS support groups, where patients worldwide share experiences and advice.
• Meetup.com: Search for local chronic illness support groups or EDS-specific meetings in your area.
• Healthcare Providers: Many hospitals and clinics offer patient-led support groups for chronic illness management, which may include EDS.
• Set Up Your Own Group: Chronic Pain Partners has resources with tips on how to set up your own support group and includes ideas for best practices. Support groups provide a lifeline for emotional and social connection, helping patients with EDS feel heard and supported on their journey – one of the most challenging parts of the disorder today.

---

Many Tune In to Facebook as a Community Discussion Forum

Facebook is quite often the preferred platform for chronic illness support groups due to its ease of access, large user base, and privacy options for groups – despite its reputation as being for older people and riddled with ads. With billions of active users, individuals with rare conditions like EDS can easily find and join specific groups. Facebook’s private group settings provide a safe space for sharing personal experiences, while features like ongoing conversations, notifications, and multimedia tools help foster continuous engagement and support. Its combination of familiarity, accessibility, and diverse group types makes it a go-to platform for those seeking community and practical advice for managing chronic conditions.

Tips for Setting up a Facebook Group When setting up and running a Facebook group for chronic illness, you can consider the following:

• Ensure social media policies allow for online communication: Make sure the social media policies of healthcare institutions allow for real-time online communication.
• Define your goals: Consider what you want to achieve with the group, such as sharing information, providing emotional support, or advocating for awareness.
• Establish guidelines: Create guidelines for content, conduct, and language, including the group’s purpose, administrators, and how to remove members.
• Pick a co-leader: Find someone who can run the group if you’re unable to be there.
• Post regularly: Encourage discussion in the group.
• Use a relevant cover photo: Upload a cover photo that’s relevant to the group’s theme.
• Get input from patients: Involve the target patient population in developing the group’s content.
• Consider the role of group champions: Understand the potential role of group champions.

For more insights on setting up a Facebook support group, read this article full of resources.

Aside from Facebook, several other platforms are available for chronic illness support groups and are more appealing to younger, more tech-savvy participants:

1. Reddit: Known for its anonymity and diverse forums, Reddit hosts many chronic illness communities, such as r/EhlersDanlos and r/chronicillness, where users can exchange advice and share experiences.
2. Instagram: While not traditionally a support group platform, Instagram fosters connection through chronic illness hashtags, allowing users to find and engage with others facing similar challenges. Some advocates and influencers also create supportive communities through posts, stories, and live videos.
3. Discord: Originally for gaming, Discord offers private servers where chronic illness communities can chat in real-time, both through text and voice, creating a tight-knit group atmosphere.
4. Meetup.com: This platform is ideal for finding local support groups that meet in person or virtually, offering opportunities for face-to-face interaction.
5. Mighty Networks: Some chronic illness communities use this platform to create independent, niche online groups with more control over group settings and interactions than social media platforms typically provide.
6. HealthUnlocked: A health-specific platform with a large directory of chronic illness communities, where users can connect, ask questions, and share experiences in a medically focused environment.

Crowdsource Your Care Online

When you’re searching for answers from others who may have been through it, here are several crowdsourcing communities for chronic illness support and patient insights:

1. PatientsLikeMe: A health network where people with chronic conditions can track their health, connect with others, and share their experiences to contribute to research and patient care.
2. Inspire: A large health and wellness social network that connects patients, caregivers, and health advocates to discuss chronic illness, share stories, and offer support.
3. Carenity: A European-based online patient community where users can track their symptoms, share experiences, and participate in surveys to help advance medical research.
4. HealthUnlocked: A health-specific social network where people with chronic conditions can join patient-led communities, ask questions, and find support from others with similar experiences.
5. MyHealthTeams: A network of condition-specific communities (e.g., MyFibroTeam, MyMSTeam) where users can share advice, find emotional support, and learn from others managing the same illness.
6. CrowdMed: A platform that crowdsources medical cases, allowing patients with undiagnosed or misdiagnosed conditions to submit their symptoms and get input from medical experts and a community of “Medical Detectives.”