My experience finding EDS support systems

Recently, a reader asked me about Ehlers-Danlos syndrome (EDS) support groups and other organizations, and various ways of handling daily life with EDS. That got me thinking about my own support networks and how they’ve changed over the years. It also made me wonder how others with EDS approach the topic.

Until a few years ago, I’d never met anyone else who had EDS. I’ve since met three people who have it. Because of that, my support system has mostly consisted of family and friends, particularly because I was diagnosed in 2009, before most people were constantly online. That’s been fantastic at times, but I also had moments when I really wanted someone who understood how it feels to have EDS without having to explain it.

I know I’m incredibly lucky to have supportive people in my life. My parents, extended family members, and friends are all aware of my EDS and how it affects what I can do or what I can eat. They take that into account when they plan events and meals, so I rarely feel sidelined or left out. But I also wonder how other people form their own networks, particularly within the EDS community.

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I’ve never felt like I needed to reach out to EDS-specific groups, but I also wasn’t aware of any in my area when I was diagnosed. Social media was in its infancy when I was diagnosed, so that wasn’t something I thought about exploring. I’d been managing EDS my entire life, even if I didn’t know what it was called. My diagnosis wasn’t a surprise, as I’d been on that journey for 22 years. I suppose that it didn’t shock me as much as it could’ve when I finally had a name for it.

I didn’t realize how much having others in my life who understand my experiences and can offer their own perspectives helps. I realized that when I became a writer for this website. It was the first time in my life that I’d found a group of people who share similar concerns. While each of us has our own story, we all share a common bond and an understanding of what living with EDS is like.

So what are your support systems? Do you rely mostly on people who are already part of your life? Or has EDS helped you find connections with new people? Are there organizations or other groups that are integral to your experience? Please share your thoughts in the comments below. I hope that by sharing, we’ll help others who are looking for support. After all, that’s what this community is about: being there for each other and knowing that we’re not alone!

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.