As part of my job this year, I developed curriculum and facilitated a group, Living Chronically, for people living with chronic pain, disability, and illness. Together we explored big life themes: relationships, embodiment, sexuality, spirituality, purpose (there’s a copy of the program at the bottom of this post). This group, run by and for folks with chronic illness became a powerful source of strength, resilience, and shared community for myself and those who participated. It was a space where, unlike medical groups and appointments, we were more than our conditions… but unlike much of our involvement out in the mainstream world, we did not feel pressure to appear more able-bodied than we are. We were free to explore how our illnesses, which take up so much of our lives, were impacting us and our way of interacting with the world.
One of the things we all grappled with was isolation and loss of friendships due to our conditions. In my conversations with members of the community before starting the group, I had heard many casual asides from people expressing how they weren’t really part of the community because they lacked the capacity to serve on multiple committees or that they didn’t really belong because they were on assistance and not able to financially contribute to the larger community as much as they believed they would need to in order to belong. I started Living Chronically in order to begin to create a space where folks with chronic conditions could work together to build a sense of full belonging within our communities. Having a set up that was as accessible as possible was key. Do you need to come late? Miss a session or two? Not have lights on in the room? Lie on pillows on the floor in order to participate? Great! Having space to bring my whole experience was so deeply restorative and, while it didn’t relieve my symptoms, it greatly reduced my suffering.
In addition to breaking isolation, this group was invaluable to me ceasing to judge myself so damn harshly for what I don’t do because of illness. The way Lyme impacts my energy levels is so freaking unpredictable. I can’t always plan what I will have the capacity to do, even on a modified scale. I have walked for 45 minutes to a neighbourhood I like with no problem at all and then suddenly found myself unable to walk home. My “Bad Days” are often met with comments that I must have done “too much” the day (or week before).
I know that these comments often come from a good place, but here’s the problem–folks with chronic illnesses can end up with a constant nagging feeling that if we only did something differently, our pain could be alleviated. It’s really easy for this nagging feeling to become self-blame: If I am in pain because of my choices than it stands to reason that if I could just make better ones the pain would cease. This has not been my experience. It’s some serious work to not blame myself for not being as organized, not having as clean a house, and whatever else this lack creates. Living Chronically was such a powerful reminder to me that I am not alone in my struggles and such a powerful reminder that my struggles are not the result of a personal failing– nothing like being surrounded by kickass, beautiful, quirky folks who are Living Chronically to provide a kinder mirror through which to reflect my life with Lyme!
I have just stepped down from the job I held as the Director of Lifelong Learning. The new venture on the horizon is that I will be applying for grants to pilot this program at a number of UU congregations throughout the region with the end goal of publishing a Living Chronically facilitation guide and curriculum. Stepping into this unknown territory is more than a tad intimidating but also filled with excitement over doing more to create accessible, meaningful communities.
Send me a message at firstname.lastname@example.org if you are interested in participating in or learning to facilitate one of these groups and I’ll work to make it happen in your area. Let’s break up the isolation of living with a chronic illness and provide these reflections of our badass selves for each other!