November 19 is International Men’s Day. We spoke to Domenik who volunteers for The Ehlers-Danlos Society and leads the Let’s Chat Men’s support group, about his own Ehlers-Danlos syndrome (EDS) journey, and why the men’s group is so important for those impacted by EDS and hypermobility spectrum disorders (HSD).
Why is the men’s group important to you?
“Regardless of gender, we all need support. Just as women and non-binary individuals do, men have physiological and psychological attributes unique to them. It’s important to address what at times can be very vulnerable discussions in a group of men that allow for a more comfortable environment. It’s crucial for these men to feel supported amongst a group of their peers where it is safe to open up about some really important issues that can also be very uncomfortable to share. I feel like a lot of the topics discussed in the men’s group are ones that they would not feel as comfortable to share so openly outside of this group.
“I appreciate being entrusted to host the Let’s Chat discussion that most men generally wouldn’t want to talk about. Truly it’s an honor.”
What inspired you to volunteer?
“I enjoy helping others with their journey. With EDS and HSD, there is so much unknown to the professionals, those recently diagnosed, and those who are undiagnosed. The opportunity to volunteer allows me to help educate others. In fact, I’m unaware of a better platform to help others with EDS and HSD.”
What topics about men’s health with EDS and HSD do you think aren’t spoken about enough?
“Men are less likely to seek out support. This generally circles back to some degree of toxic masculinity. I feel it holds many back from being fully open…and communicating how they feel. And how you feel is one of the largest factors towards the quality of your life.”
Share anything you’re comfortable with about your EDS diagnosis, journey, or symptoms.
Diagnosis
“While diagnosis often takes years for many, I unexpectedly received my EDS diagnosis during a routine physical exam at a university teaching hospital in the mid 1990s. Over a period of four hours, I was visited by multiple doctors. After multiple types of examinations, the doctors would leave for a few minutes returning with a group of student doctors where my brother and I would perform the exam again in front of a group of student doctors.
“As exciting as an early diagnosis is — we parted ways with little guidance for the future. I was informed my knees would likely hurt in the future. That was about it. I’m thankful that we’ve learned so much more about EDS and HSD since the mid 1990s.”
Symptoms
“Before mentioning my symptoms, there is a point I’d like to make that I can’t stress this enough: each person diagnosed with EDS and HSD has unique symptoms. It surprises me that this doesn’t resonate stronger within the medical profession. It is my hope that with the great advocacy work being done by those with EDS and HSD along with organizations like The Ehlers-Danlos Society that both the medical profession and the wider community will come to understand our unique symptoms and how our illness progresses. No two zebras have the same stripes and we are all as unique as their stripes.
“As for my EDS symptoms: as predicted by my diagnosing doctors: my knees hurt, as well as their connected counterparts, my hip and ankles. I also have an array of gastrointestinal issues that I like to think are mostly managed.”
What is your most challenging symptom?
“It’s not a symptom per say but the unpredictable nature of my symptoms. It’s challenging to be consistent when my illness and symptoms are consistently inconsistent.”
You can find information about how to join the Let’s Chat: Men’s virtual support group here. Our Let’s Chat: Men group is for men who have been diagnosed with, or suspect they may have, EDS or HSD. This group takes place quarterly and is a great place to share your experiences with others who understand what it is like to be a man who is affected by EDS and HSD. The next meeting is December 12, 2024.
