In this episode, executive director Jesse Suter talks about Long COVID with Krista Coombs and Kate Larose. Krista and Kate both work at the Vermont Center for Independent Living (VCIL), and both of them have firsthand experience of being, being with, and supporting COVID “Longhaulers”. (‘Longhauler” is a nickname for people with Long COVID). The three of them talk about changes in disability equity and healthcare in Vermont as a result of the COVID pandemic, as well as some of the work VCIL has been doing to support people disabled by COVID.

https://youtu.be/QLLbmYUA5YE

Important Links:

VCIL Long COVID Peer Support Group (meets every Tuesday, 11am EST)
UVM Health Network COVID Recovery Program
Dartmouth Long COVID Clinic

A full transcript of this episode appears below.

Jesse: So hello, everyone. My name is Jesse Suter. I am a 50-year-old white bald man with short facial hair wearing a white-blue shirt in front of a blurred background. I’m here with Kate Larose and Krista Coombs to talk about their work focused on pandemic support and advocacy for Vermonters with disabilities. They lead the pandemic equity team at the Vermont Center for Independent Living. Thank you so much for doing this. I’m really excited to get a chance to talk with you.

Kate: Thanks.

Krista: Thank you.

Jesse: So we’ll start with, or I’m going to ask you to please introduce yourselves by telling us who you are, where in Vermont you’re from, and your connection to disability.

Kate: Go ahead, Krista.

Krista: Okay. Hi, I’m Krista Coombs. I am a 51-year-old woman, white skin, long brown hair with some oversized blue glasses. I’m sitting on my bed where I often do work from home. I’m down in Bennington, Vermont. I’ve been living here since 2016. My family moved here from Philadelphia and I also grew up in our south of here in the hill towns of Massachusetts in a really rural town. We have a beautiful property here with chickens and dogs and cats and a big garden and fruit trees. I used to have an acupuncture practice since 2002, and then I needed to pivot as I became sick from COVID in twenty-twenty, and I’ve never really recovered. I became disabled and I’m not able to do the things that I once was able to.

I have a family history of long illnesses from infections from once I was a child to now, and actually my grandmother died of bulbar polio when my mother was 7 and she was 27. I’ve always actually been concerned about viruses, and for some reason I was really taken off guard with COVID and I wasn’t really paying attention even though many of my friends were sick here in early February through early March 2020 as were we. I started shifting my focus to understand what was happening to myself and my family, and I started to study more seriously what people had been doing in the past to help with other infectious triggered illnesses with similar symptoms and conditions such as the ones we were experiencing.

Since we didn’t have a positive COVID test as I was sick before any of this was possible, that also made everything a lot more difficult, and I began to understand more and more about invisible illness and how under-recognized it is and how debilitating it could be. It took until the fall of 2020 for me to actually hear the word long COVID and immediately it was like a piece of the puzzle suddenly fit. Ed Yong had written an article in The Atlantic and that was the first I heard about it. I really didn’t want anyone else to be sick like we were or be alone going through it. I started talking to Kate at VCIL and I learned about the pandemic equity team and that there was a place for me there. My position at VCIL is long COVID advocate and I work part-time, flexible hours from home, and I started in March of 2023.

In terms of my connection to disability, I’m newly disabled with chronic illness and I have many new diagnoses, especially this past year of 2023, such as something called myalgic encephalomyelitis, often called chronic fatigue syndrome, and also a newly identified immune deficiency that requires me to have home healthcare with weekly infusions at home. I’ve been mostly housebound and bedbound and I manage a lot of my symptoms that often fluctuate in severity. So far, the first two years were really the worst and I have stabilized a lot. I have a lot of difficulty with memory and organization, and a lot of my senses have all been scrambled, so I’ve been finding ways to accommodate my new disabilities.

Jesse: Well, Krista, thank you so much for sharing all of that and welcome. Kate?

Kate: Yeah, hi. Thanks so much, Jesse. My name is Kate Larose, she/her pronouns. I am middle-aged white woman with long brown hair, blue glasses, and today I’m wearing a blue dress with a silver necklace with pearls. So I became disabled about six years ago now. I experienced a traumatic brain injury. And at the time, I was working for a community action program working to support primarily folks who were living in poverty and people who had disabilities. And I thought I knew a lot about the realm of disability and systemic ableism at the time, given the work that I had done. And it wasn’t until I became disabled and really experienced firsthand what it’s like to be systemically excluded from things like the workforce, education, civic participation, health care, et cetera, et cetera, that I really started to get it and unravel my own internal ableism.

Shortly thereafter, the pandemic began and my child and my husband are both immune-compromised and we tried really hard to make sure that we could do all the mitigations we could to protect ourselves. And unfortunately last year in April, once healthcare dropped masking, individual actions were no longer enough. My husband became completely disabled with long COVID in August, he spends almost 24 hours a day in bed. He hasn’t been able to work. I am now a caregiver for someone who used to be my caregiver, and we are continuing to navigate this both for ourselves and in the context of VCIL using our lived experience to make it easier for other folks too.

Jesse: Thank you, Kate. And we’re going to talk about some of your work with the pandemic equity team, but I just want to say I really appreciate that you both have the lived experience. As you said, Kate, you have an understanding of this at a much deeper level and a much different level than most. So we’ll talk about that. I do want to take a step back because you both work at the Vermont Center for Independent Living, which we’re also shortening to say VCIL. Can you tell us a little bit about the organization and what VCIL’s connection is to long COVID?

Kate: Yeah, thank you for that question. So at VCIL, we are people with disabilities working together for dignity, independence, and civil rights. So as one of over 400 centers for independent living across the country, we have in our bones as a center for independent living and as part of our history, this is what we do. I want to talk a little bit more when we get into it later on, the history, the intersectionality of post-viral illness as a foundational core of the work that we do and as a foundational core of disability rights today as we know it. But this is what we do around the state. We are a center for independent living with the pandemic equity team in particular, we continue to assess and respond to the current and ongoing pandemic related issues Vermonters with disabilities are experiencing, that includes COVID long haulers, and that includes developing resources and community, supporting people and advocating for equal access to education, healthcare, and civic life.

Krista: This is Krista. I just wanted to add, for me, coming to VCIL, the model of independent living and peer support has been something that I wasn’t really aware of before, the power of peers and the power that everyone is unique with individual needs and what I was doing on my own was trying to identify what those were, and it’s so much easier to identify it with other people sometimes and get advice from people who also know some things that are similar in their lives. So peer support for me has really changed how I view things and it’s just a really powerful way of being together and sharing resources.

Jesse: Great. Thank you both for sharing that. And Kate, I appreciate that you’re, I think, foreshadowing something that you’re going to bring up later in the conversation, the historical connections. So we’ve used the term long COVID a few times and how it affects Vermonters. So let’s start with what’s a good definition of long COVID, and you’ve both already shared a little bit about your experiences. You might want to sh...