Chronic Comrades Chronicles Volume 1

For the last 3-4 months, I’ve convened a group of loves ones together to talk about chronic conditions. We jokingly call our group chat “Chronic Comrades” and, after today’s call, I thought it would be meaningful to lightly document some notes, partially so we can collectively remember and partially to bring others with us. The format is fairly simple: we talk for ~2 hours, taking turns sharing updates from the last month and weaving in and out of the impacts of chronic conditions.

With that in mind, here are some quick notes from today’s hang:

• We talked about how different it can feel to be unwell or in pain constantly and then have moments of it lifting vs the up and down cycles on the extremes of well and unwell. Sometimes it can feel easier to be in a steady state of unwellness than to feel the cycles that wear on one’s resiliency when you know another bout is coming again.
• We talked about how chronic conditions can impact friendships, especially in how folks might say they want to show up vs how they actually can. Having a chronic condition can both be a moment of connection/understanding if someone takes the time to understand and you take the time to explain or it can be a cause of great disconnect and pain.
• We talked about how sometimes when you start feeling good again you can almost self gaslight into thinking you’ve made it all up, partially wanting to be in denial that it can happen again.
• We talked about being careful with numbing and how broad numbing can look, from diving into side projects to drinking more than one wants to be.
• We talked about how vulnerable it is to be cared for and how different each person’s vulnerability can be. Sometimes it’s easier to simply say nothing when feeling unwell, particularly if it’s chronic, and only speak up if it’s really bad.
• It’s especially exhausting if you do try to explain and folks brush off or don’t get it.
• How people simply showing up to share space or be light can be so helpful. Sometimes you just need someone next to you.
• How everyone can show up in different ways and how important it is to honor that while also recognize when we have a gap in needing someone to show up in a specific way.
• We talked about the upcoming holidays and how hard it can be to both be away from your own space and to have others in your space. Tied to this we talked about how different family members’ houses can both feel incredibly safe/relaxing and incredibly unsafe.

We ended on a quote from a book one of the Chronic Comrades on the call is currently reading:

If we think wellness is the norm and requires nothing to sustain itself, then we think sickness is temporary—and so must be care. The imperative of wellness produces the lack of care… If we are always differentially unwell, and always deserving of care, then healing is the endless process of care by which we try to make life more livable, in all the ways we need, whenever we need. I don’t know where we will be by the time this book is published, if the pandemic will be over, what the world will look like, how many of us will still be here. But I hope somewhere along the way we will have listened more to our unwell, our wounded, our hurting, our dying, our dead. I hope we will more easily say what hurts, to ourselves and to each other and with each other, and do the work of figuring out together how to go on living while it hurts. I hope we can be gloriously and awfully unwell together. (228)

Mimi Khúc from Dear Elia

What a way to end.