How Covid Long Haulers Build Community - A Conversation with Kathleen Banks

Season 4 of A Friend for the Long Haul - A Long Covid Podcast is here! We're starting where it all begins: with each other.

CW: in this episode, we do discuss depression, medical trauma, suicidal ideation, and suicide.

In this first episode of the new season, I sit down with Kathleen Banks, a health systems researcher and Long Covid patient, for a conversation about something none of us planned for: finding our biggest cheerleaders and chosen family in our pockets.

We talk about "pocket friends," - what Kathleen calls the people living in your phone who already know how you feel, who you can reach out to when a symptom scares you at 2am and, who don't need an explanation if you have to cancel a FaceTime. We explore how so many of us arrived on social media not necessarily looking for friends, but for validation, and found so much in each other. We also get into the real cost of being sick in America. It's not just co-pays and premiums, but the fancy expensive bandages you need because of MCAS, and the $77 supplements that you go without because you have to pay your phone bill so you don't lose access to your lifelines. We also discuss community care: what it looks like when you can just send someone money, no questions asked, because you know what it is to need it, or when strangers send your kids more birthday gifts than their grandparents do.

Kathleen also shares her work training public health researchers in trauma-informed methods for interviewing Long Covid patients and why she used episodes of this very podcast to supplement her work. We talk about disability justice, the particular grief of Long Covid Awareness Month, and what it means to still be here, building something remarkable out of what's left.

Oh, and somewhere in the middle of that, we talk about moss. I'm girl moss, not a girl boss.

This is the first episode of my Long Covid Awareness Week series. Season 4 is about community - the ways we've been discarded, and about what we've built for each other anyway. We're still here because of us. My call for listener feedback on community was so well-heeded that this "episode" is being split into several parts that will all be released this week.

More information about Kathleen, my beloved wife:

Kathleen Banks is a health systems researcher with expertise on patient-physician relationships; systems thinking; patient advocacy; and dignity in healthcare. She specializes in the translation of evidence, high-level policies, and systems decisions at the point of care. Ms. Banks has worked with policymakers and officials from the grassroots to the global level, and uses that experience to bridge understanding on how to design and implement effective programs and policies .Ms. Banks is currently finishing her Doctor of Public Health degree at Boston University School of Public Health. Her research focuses on access to patient-centered healthcare for people living with Long COVID. Ms. Banks has been a member of the Patient-Led Research Collaborative since 2024.

You can listen to the Long Covid Theme Songs Playlist on Spotify. It's full of songs from people who have joined me on the podcast. Each song represents some aspects of that guest's long covid experience.

You can find me on Instagram, TikTok, and on my Substack, called Haulin' Ass.

A Friend for the Long Haul is produced by a disabled Long Covid patient. Support community care through my Bonfire shop or my Amazon wishlist, or make purchases for your everyday items through my Amazon Storefront.