What I learned from my first time meeting another EDS patient
A columnist discovers the value of connecting with others who 'get it'
I’ve mentioned before that I’ve never met anyone else with Ehlers-Danlos syndrome (EDS) in person. That’s one of the reasons I’ve enjoyed writing this column: It’s allowed me to connect with others managing similar health issues. Recently, however, I met someone else with EDS!
My brother and his family were in town, so we invited over a few friends we hadn’t seen in a while. There were a lot of different food allergies to accommodate, but I didn’t mind. I have alpha-gal syndrome (an allergy to the mammalian sugar molecule) as well as EDS food sensitivities, so handling myriad food restrictions and allergies is second nature to me.
We were all talking about how we manage our various allergies, and the conversation drifted into other health issues. Someone mentioned chronic pain, and I said, “Oh, I totally get that. I have EDS.” The response was immediate: “No way! I do, too!”
The conversation that followed helped me better understand myself and EDS, and it highlighted how different people with the same diagnosis can be.
First, our conversation got me wondering why it had taken me so long to meet another patient.
I was diagnosed later in life, so I didn’t have the chance to meet other people with EDS while growing up. The condition is also somewhat unique in that patients don’t often meet during treatments or specialist appointments. At least, it’s never worked that way for me.
Sure, I’ve been to allergists, orthopedists, surgeons, and physical therapists, but people go to those doctors for a variety of reasons. Running into another EDS patient seems unlikely, and since it’s often an invisible disorder, I likely wouldn’t know if someone had it, anyway. It was a lucky coincidence that our group of friends happened to be discussing chronic pain and health issues.
In addition, I’ve always struggled to comprehend how EDS can vary so much in terms of severity. My symptoms might be worse than one person’s and not nearly as bad as another’s. I knew from a clinical perspective that those of us with EDS share as many differences as similarities, but it was helpful to experience this firsthand while talking with another patient.
More than anything, I felt an immediate connection with this individual. Although our symptoms and care management plans differ, I didn’t have to explain or justify anything. When I mentioned the exhaustion of chronic pain, I didn’t have to worry about whether they’d understand. When I brought up the widespread achiness that never lets go and constantly simmers beneath the surface, it was such a relief to know I didn’t have to explain what that sensation is like. Despite our differences, we shared a basic understanding of life with EDS.
Having never met someone with EDS before, I was struck by how our shared understanding formed such a solid foundation for interaction and friendship. For the first time, when I shared something that had always felt like an “only me” thing, I got an immediate “Yes! I totally get that!” in response. Finding someone who “gets it” can be so comforting and validating.
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.