ID: The words New Blog Post in the upper right hand corner. A group of silhouettes with varying mobility aids under the title Community.
At the moment, I’m taking a meditation class. A few weeks ago, the leader asked us to come up with a word that represents a path forward for ourselves and our meditation practice. The words were varied, but words similar to enlightenment and allowing were shared. The word that came up for me was community. As a queer, disabled person, finding my communities has been a life changing experience for me. I recognize how valuable these care systems of chronically ill friends can be.
Becoming chronically ill felt isolating. Even those with the best intentions struggled to understand my condition. I lost friends, opportunities, and a career I was passionate about. In 2015 I attended my first in person support group for people with Ehlers Danlos Syndromes. Being around so many other EDSers felt really exciting. There, I truly met Zebras of all stripes. I remember hearing a woman talk about being a music teacher and I knew I wanted to learn more about her. Over a few years and many more meetings, we’ve become close friends. Having other people who “get it” has really felt liberating. I can call to ask for advice or vent frustrations. We share doctors and treatments, and sometimes just play board games or catch up. She represents just one in a community of EDSers, and other chronically ill and disabled friends. We all work together to support each other in the ways that we can.
As a queer person, I was excited to try out the Ehlers Danlos Society’s LGBTQ+ group. At one point the facilitator asked what benefit we got from the group being specifically for LGBTQ people. I immediately realized it was because I can show up as my full self in that environment. I’m not policing anecdotes and my personal history to avoid outing myself in a space where I’m being vulnerable and don’t know how other people feel about the queer community. So I don’t attend or worse, I do attend as only a part of my full self. Having spaces dedicated to these intersections is so important, and I really value the work the Ehlers Danlos Society does in maintaining many support groups for different communities within the larger EDS community.
For me, community means many different things. I have my in-person EDS community, my online EDS community, my queer EDS community, my trans EDS community. There are communities of EDS musicians, artists, and even athletes. And as I’ve become legally and truly disabled that has only expanded to mean I am building my queer, disabled community. I volunteer with an organization that isn’t related to disability or health at all. And even there, I get to represent the disabled community and advocate to make sure all of our events are truly accessible. I’m very grateful that becoming chronically ill helped me to find my different communities.
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