My experience finding EDS support systems
When I was diagnosed, there wasn't a large online presence
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.
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.
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Carol Wong
I have found on-line support but problem is finding a doctor and physical therapist who even willing to discuss it.
Tonya Weaver
Hi, is there a link/reference(s)/guidance for those without supportive care/family to utilize when answering “no” to the questions in the final paragraph of the article? Thank you!
Rebecca
A genetic mutation for EDS and OI runs in my mom's side of the family, and it's a big family. I was the first formally diagnosed with EDS and now those of us in the family with it have our own support network to share experiences, recommendations from doctors, etc. We've lost a couple to ruptured aortic aneurysm and only learned after their deaths that they also had EDS. Even though we share the same genetic mutation, the degree and expression of the issues varies amongst us all. The crazy thing is that, when I was diagnosed years ago, I wondered if a business colleague might also have it as we had many similar symptoms. But I didn't say anything because I didn't want to seem weird - how do you tell someone out of the blue that you think they might have the same genetic disorder? Just recently, we reconnected and I mentioned that I had finally been diagnosed with EDS to explain all the weird symptoms. She had just been diagnosed a couple of weeks prior. And now she and I have an even stronger support system together than I do with family. We're both taking supplements that help to manage the symptoms, and we both get lazy when the symptoms improve, stop taking the supplements and then have a relapse. So, having an accountability buddy is awesome!
Mischa Brown
I had a couple of friends with EDS who encouraged me to pursue diagnosis. Shortly afterward, my sister was diagnosed, too. Then I found The Zebra Club, of which I am a lifetime member, since it is such a positive supportive community. 🦓 😊
Skia Laurence
I was diagnosed late in life -- Though I'm told I'm a classic case, but everything that happened to me young was written off to freak accidents -- not surprising, it's genetic and similar stories were in my relative's experience. Our family culture normalized a lot of easy injuries for women. Yet, we were very proud of other aspects of our genes, like academic giftedness and often longevity. It wasn't until my daughter's doctor suspected EDS that I was diagnosed. There was no support around the diagnosis except for medical recommendations which did helped me more than they helped her. It did a number on the mental health of both my daughter and I. She made the decision not to have children and has distanced me without saying why-- perhaps resenting that I had her. All she said was that "she was mad at me and the world and everything". Heartbreaking, as we'd always been close. Over the years, I've tried to connect with EDS support groups, but it seems like we aren't really there yet in terms of psychologically coping and being able to help each other live our best lives. We also have done little to raise public awareness or provide reasonable accommodations. (Face it cement floors are hell for us. Old wooden buildings are much better. And how in the world does one avoid Latex? There aren't even warning signs in public places that have it. We are still in the awful situation where people who know often don't include us because they don't want us to get hurt.) Where I have found support and understanding is within the larger disability community. Finding friendships with people who were born blind or with CP and have learned to cope with it from childhood has been really enlightening. They know how to embrace who you are and what you can do instead of dwelling on the problems and fear. An easy thing to do to make life better would be to adopt some of the education that is given to disabled children in the best schools and give that also to people who are diagnosed with genetic conditions in their teens or in adulthood. Otherwise, the diagnosis just feels like sentence of doom and we are left to find our way out alone. Looking at the EDS forums, lots of people are spiraling down instead for finding their way.
Sheri Machel
I live in the DFW area (Texas). You would think that there would be more doctors who are familiar and help those with hEDS, but that is definitely not the case. I’ve been to rheumatologists, orthopedic, neurosurgeons, and PCPs and not one of them has helped me. The only Dr that comes up in any recommendation is a Dr at UTSW. I have an appointment but it is almost a year’s wait. I’ve requested PT from this UTSW department so that I can try to help myself, but there has been no response to my many requests.
I’ve been to PT through other doctors and it has only led to more injuries. I’m frustrated, tired, scared and in a really dark place now as all I do is lay around out of fear of more injuries. I’ve always been very active, strong, never overweight and have taken pride in myself for being healthy and strong. However, I now feel my body has turned against me and the time in my life when I’ve had to reach out for help, there’s not one doctor who seems to care.
Jaime Marie
I just found this website, and I think it might be helpful for me. I was diagnosed with Ehlers Danlos with hypermobility in 2008, but I never really followed through with proper treatment, mainly due to lack of understanding on my part. Here I am, all these years later, with neuropathy. I'm seeing a neurologist who is testing me for small fiber neuropathy, which is apparently quite common with hEDS. I was also under the impression that I had fibromyalgia since 1999. I don't think I have fibromyalgia at all-- I honestly think I've had hEDS all my life. It just makes sense. I'm curious to know what kind of support is available in the way of books, websites, and support groups.