Building Support Systems

 

Building a strong support system is truly vital for managing life with Ehlers-Danlos Syndrome (EDS). Here’s how you can create connections and strengthen your support network through support groups, events or conferences, virtual meet ups and other ways to connect. Finding your tribe can be a key piece to feeling validation and to having others who understand to talk to.

Here’s a few ideas on where and how you can create connections and strengthen your support network:

1. Join EDS and Related Comorbidity Support Groups (Online, Virtual, or in-Person): Look for EDS-specific groups online, such as through Facebook groups by searching “EDS,” or search by location on the EDS Awareness website, or try the Ehlers-Danlos Society directory of forums. Once you’ve joined, these platforms offer a place to share experiences and advice with those who truly understand. If you need support in setting up your own support group, the Chronic Pain Partners resources are very helpful in setting up a new group and offer an online site for your group’s information.
2. Attend Community Events: Participate in workshops, conferences, and webinars focused on EDS and chronic illness. Events like the EDS Society annual conferences provide great opportunities to meet peers and experts and build a sense of community.
3. Look Into Your Local Community Centers: Check if local hospitals, expert doctors or community centers host groups for chronic illness sufferers. These can be great for connecting in person and finding local resources.
4. Try Virtual Meetups Safely: Organize or join virtual meetups with themes like book clubs, craft nights, or movie discussions, which can be easier on the body while fostering connections.
5. Find a Partner Zebra with a Buddy System: Pair up with another EDS patient to check in on each other regularly, share tips, and offer emotional support. This can be set up through patient advocacy groups or informal social media connections. Its invaluable to have at least one person who understands be able to listen.
6. Consider When You’re Up For It to Advocate and/or Volunteer: Engage in advocacy work or volunteer with organizations related to EDS. This can help you feel empowered while contributing to greater awareness and support for the community. Here is a list of EDS supporting nonprofits you might want to look into or get involved with. They are usually welcoming to their members supporting their efforts any way they can and you’ll meet some fellow passionate advocates who might inspire you.

Building these connections can provide emotional support, practical advice, and a deeper understanding of how to navigate life with EDS.