Brain Club®: The Podcast

Brain Club®: The Podcast - Episode 1 - Loneliness & Health

What happens when people’s access needs — the things we need for full and meaningful participation — aren’t met?
In this episode, we explore the impact on relationships, the nervous system, and health. You’ll hear from community panelists reflecting on what happens when access feels out of reach, and how loneliness shows up — not just emotionally, but physically, as a nervous system response to threat. We also talk about what community care can look like when we center connection and access.
This conversation was originally recorded as part of All Brains Belong’s Brain Club® — a weekly community education program focused on demonstrating neuroinclusive culture in action.
Panelists:Simone Arnold, Rhy Wepāloki, Aspen Kupper, Jay Greene, Amy Ruddy Wertenbaker, Bruno Choiniere
Brain Club is not medical advice or a support group — it’s an invitation to think differently about health, connection, and how we build systems that include everyone.
Join us live most Tuesdays at 6:00 PM ET and explore 4 years of past videos at allbrainsbelong.org/brain-club
Transcript below:
Brain Club®: The Podcast - Episode 1 - Loneliness & Health
Mel Houser: [00:00:00] Hello! Welcome to Brain Club: The Podcast, a space for learning, unlearning, and reimagining new ways of being together in neuro inclusive community. I'm Dr. Mel Houser, Executive Director of All Brains Belong Vermont. Welcome to our brand new podcast.
Brain Club is All Brains Belong's weekly community education program where we demonstrate our approach to neuro inclusive culture through community panels, guest speakers, and book chats. It's a place where we shift broader community awareness about the issues of concern and importance to neurodivergent people in our community and promote new ways of thinking and being in community together.
It's a place where we transform culture by modeling what's possible, with the idea that then you go out into the rest of your lives and carry it forward.
Mel Houser: You can already access all the recordings from our website, allbrainsbelong.org, but our community asked us to turn it into a podcast. So here we are.
These conversations are not medical advice and they're not support groups.
They're an invitation to [00:01:00] think differently about health, connection and how we build systems that include everyone. Each episode features community panelists, sharing perspectives and lived experiences. We hope you'll listen with curiosity and reflect on what it brings up for your own life.
Today's episode is about loneliness and health.
We explore what happens when people's access needs-- that is what we all need for full and meaningful participation --are not met. We talk about the tensions this creates in relationships, how it contributes to loneliness, not just as an emotion, but as a nervous system response to threat. We explore how loneliness stays in the body, how it shows up in community, and how all of this connects to health.
This conversation was originally recorded as part of our Live Brain Club series every Tuesday night at 6:00 PM Eastern. So let's listen to our community panelists sharing their reflections.
Panelists in this episode are Simone Arnold Rhy Wepaloki, [00:02:00] Aspen Kupper, Jay Greene, and Amy Ruddy Wertenbaker. Okay.
Let's get into it.
We wanted to talk about, this idea that when you are living in cultures where people don't get it, that is isolating and that has an impact on health. What's been your experience of that?
Aspen Kupper: so I have two, two ways of thinking of this. The more direct answer to your question is it's gotten a lot better recently 'cause I have more friends who understand.
As we get into summer, it's probably gonna get worse again, because I'm probably gonna get a lot of invites to do things outdoors and go on hikes and stuff like that. I feel since I have made friends who understand or at the very least are aware enough to ask if they're not sure, [00:03:00] It's gotten a lot better. but I still have one person in my life who consistently is like, Hey, wanna go on a walk? Hey, we're going to this event. Do you wanna walk there? And I'm just like, bud. Do you forget? And I think the hardest thing for me is in my head I'm like, is this person forgetting that I'm disabled, which sucks and feels really invalidating? Or does this person not believe that I'm disabled?
Jay Greene: I do wanna say that it's really hard. It's really hard to, there's a lot of grief, I think, is the right word for it. involved in, Accepting that I have some limitations right now.
Rhy Wepaloki: Loneliness can make you and break you at the same time. I was lonely, like deeply and profoundly [00:04:00] lonely,
And I was surrounded by people telling me I shouldn't be who I was.
But it was different than being around everybody, coming from all angles, telling you who you were is wrong, and trying to make you tear yourself apart into different identities that were disparate that.
And I think at that point when I was younger, I internalized that as it's better to be lonely than torn apart. That choosing of the, of being myself or trying to fawn and be less of myself, that it was better to be myself than to tear myself apart into pictures goals that I was never gonna meet.
Mel Houser: So loneliness was a strategy to reduce harm...
Rhy Wepaloki: I think on ABBig level. Yeah.[00:05:00]
Mel Houser: And you carried that with you through most of your life...
Rhy Wepaloki: yeah, I and still, I think, yeah. I think loneliness has been a strategy on a certain level in order to maintain my sense of self. Which I think does really relate to my health.
That being said, I think it takes its toll. I'm freaking tired. Yeah. And I'm burnt out and I can say that easily now. Like when I'm angry about oppression in the world, I'm angry and I've been holding that back my whole life.
Aspen Kupper: The messaging is there, is that I don't matter. Yes. That I am not an important part of whatever you are trying to do. Whether it's hanging out with me, whether it's having an event and being like, sorry, it was the best place we could get. And it was like, [00:06:00] cool. Okay. So much I could go into with that, but like what the messaging is there is. I am not important enough to be considered in figuring out how to make it work.
And a lot of the times it's also like people are like, oh, we're having this thing. I didn't invite you because I know you can't do that. Aw. And it's thanks. And also, why didn't you figure, first of all, invite me and let me decide like. You might, you can preface it with Hey, I'm not sure if your body can handle this, but we're doing this thing.
Would you like to come? Or, better yet, ideal world is how can we make this accessible so you can join us? Yes. And sometimes if it is a hike up the mountain that I'm just gonnABBe like, Nope. Have fun. Let's, I'll join you for ice cream after, that happens. But like the fact that it feels all or nothing.
There's no room for [00:07:00] like, how can we make sure you can join us in This is so upsetting and is it like really impacts the quality of the relationship.
Rhy Wepaloki: And I live in a, a small community. but
yeah, I still, I'm not really a part of. I'm too much this to be that and I'm too this to be that and I'm too that to be this. And I fit in between all these different realms that have all these very hard junctions instead of wavy, overlapping spaces and on, on multiple identities. And I think, yeah, I think loneliness has been a strategy.
Mel Houser: And I think this idea of I opt out of trying to interact with. Quote, community, because community is unsafe. Community's expecting me to not be authentic. I can't safely be authentic. I'm being rejected [00:08:00] for all that I am, so I opt out of this. I think that's really common in the All Brains Belong community, which is why I think it's like it's. It feels really radical. Like why? What do you mean I'm gonna interact with other people? Why would I do that? Other people suck. anyway. What has been your experience of meeting others in the ABB community?
Rhy Wepaloki: Yeah, I it's been wonderful. really wonderful. I think that all of us have so many things in common and also so many unique things that make us.
Mel Houser: What do you think ABB's role is in supporting Neurodivergent people?
Simone Arnold: I actually think it is the community aspect of it. And that's really where I think most of the healing and growth happens because, you're dealing with folks who have like really complex health things that oftentimes we can through research, trace them to suppressed rage and anger to suppressed like trauma that hasn't been like processed to, just [00:09:00] like systemic stress and overwhelm.
And so the community piece re helps reduce the shame because the sharing of narratives is shame reduction, which then means that we can like work through all of the other things. So if I could hook all of my clients up with an ABB B like community, I would. Because I think it would be integral to their healing process.
Jay Greene: And it's fabulous to have. it's fabulous to have ways to interact with community that, don't involve the things that really tire me out, like going places in person and riding in cars and whatever. So shout out to the ABB discord. it's so great to as I was looking over the prompts for today, I was like, wow.
I think one of the best things about the Discord is that, i'm like a very service oriented person. Like I really get a lot of joy and fulfillment from volunteering and that kind of, mutual aid efforts and stuff. And I can't really do a lot of stuff like in person volunteering right [00:10:00] now, but if someone has a question about something on the Discord, I can do a little research or I can, i'm really good at summarizing complicated ideas into sort of bite-sized chunks, and, making things a little more easily digestible. Yeah, I'm, I feel like I have so much. It's so great to have like ways to contribute and connections with people that don't involve, going in person and again, putting myself into sort of a fatigue crash. And then also just like the fun stuff, posting pictures of our cats and, sharing those links to, video essays that I'm really excited about. Things like that. Is it a fairly new lens that you have the idea of?
I have a finite capacity. I have a finite amount of energy I have to triage where it's spent. There's all these factors and I have to do the math. Yeah. it's a newish thing in the last couple years.
Mel Houser: Yeah. That you have a lens to understand. And I think that there's so many people in our community who are acquiring that lens for the first [00:11:00] time and meeting other people that are navigating these things.
So maybe the last question I'll ask you is just around what do you find most valuable about ABB's role in supporting Neurodivergent people?
Aspen Kupper: I think that I get to hear lived experience and lived like tips and tricks, and I get to like connect with people if I like. I feel like the most valuable part for me has been connecting with people who have similar experiences, who can relate, who can give me their own experience and what has helped for them, and also I know that if I were having a hard day or I was really lonely, I could put that in the chat and someone would show up. Either a voice and this is the great thing is that like it's, it might not be exactly what I want, but it will be something where it's I can't come visit you, but I can do a voice chat [00:12:00] with you.
I can do a video call or one, some, one person from ABB has come to my apartment and helped me change my bedsheets, which was like, sounds so small, but I literally can't change my bedsheets by myself. And every month I'm like putting out an ask on my Instagram for someone to please come help me change my bedsheets.
And so to have someone be willing to come do that and there would be no judgment. and knowing that I hope they know, but I know that if they had an ask that I could fill that I would have their back. So it's it's the lived experience and it's like the mutual aid.
Amy Wertenbaker: Something that I think is really valuable is this opportunity to be heard by other people and seen and, while also getting your needs met. And there's just something magical about that. When I first started seeing it happening, as somebody participating in the groups, I was just like, they're onto something pretty, pretty special here.
[00:13:00] And you're getting to connect with people. And I think it's, being somebody with a chronic illness and limited energy and limited, getting out and about in the world is an effort, is a real effort. It's just, it's a great opportunity to just be able to connect with other people and then to have it be other people that know what you go, you're going through that have similar medical concerns as you do it just.
There's just something about it that's just very healing in itself, even before you get the prescription you need or anything.
Lizzy Pieratt: What was healthcare like before ABB?
Bruno Choiniere: Challenging and difficult would probably be the best words. once, once I started having a lot more health problems a few years back, I started bringing long lists of, we need to look into this. And, for the 15 minute doctor appointment they couldn't really deal with that.
Mel Houser: Yes. And because of the hidden curriculum of medical education, the patient [00:14:00] with the list gets a bad wrap even though what is wrong with collecting and organizing information?
I love when people do that. It's so helpful. Yeah. But that's. That's the narrative. And I think that, many people, have, you pick up on vibe or energy and you're like, oh you know that person doesn't like me or that person, and I think that happens in healthcare encounters, and I think it's true.
I think it's true. I think if you think you're, if you perceive that you're being judged. You probably are.
Bruno Choiniere: Prior primary care practitioners get a random doctor or nurse practitioner was pretty frustrating because they don't I've had things where they don't know what's going on and they just shrug their shoulders and don't know what to tell you and wow.
It's not a good feeling. I could name at least three symptoms or conditions off the top of my head that I've been [00:15:00] diagnosed with that are idiopathic. Which in technically means something like of an unknown origin or cause. But to me it really feels more like. We don't really know what's causing this and we're not gonna do any work to figure out what it is.
And it wasn't until I found clinicians who believed me and a community of people who also experienced those symptoms and could provide some support around what are some practical things that you can do to make yourself feel better outside of like the medical system. I started. Attending brain club before I became a patient and learned a bunch of things and then I was like, okay, I need to be a patient here.
It's miles and miles ahead of the typical healthcare system.
Lizzy Pieratt: What do you think about the group medical visits?
Bruno Choiniere: Took me a little while to get there, but I'm fully on board in that regard. Found that much like brain club, the. The group medical visits become both validating and [00:16:00] educational when other patients in the group, sort of chip in about, oh I experienced that too, and, or, this is how I've dealt with that sort of health issue, and I have felt listened to, heard, I have felt that my healthcare concerns are believed.
They're not scared of lists of things. And they're also not scared of that maybe I, did some research online and I either, know for sure I have something or wonder about it. The conditions that I've been dealing with my entire life, like they're genetically based and I've had symptoms or signs that I've had these conditions my entire life.
Jay Greene: And it took until almost 35 to get the diagnosis that actually, that actually fits the whole picture, explains everything and points towards a, towards some practical treatments and solutions to actually make life a little easier.
Bruno Choiniere: The other part of it is the community aspect of it. [00:17:00] all brains belong, I think has worked hard to make that grow.
And I, it's. I think it's a really important part of the whole thing. Like at least I'm coming to understand that now. Like I've had I've had two, two community members that, I consider friends that I hang out with now and it's unbelievable how, how validating it is and comfortable.
To chat with these people and hang out because you have a shared language and shared experience. There's, once you've delved into all the the, the brain club topics and have started unlearning all the garbage you got earlier in life, like you just, you don't have to put on a mask.
You can just be yourself and it feels good.
Mel Houser: If everyone is trying to overcome and [00:18:00] unlearn all of these things individually. These things cannot be unlearned individually. At least not, I don't, not to say that also as a person new to chronic illness, I don't even know what this would be like to not spend my whole day around other people who get it.
I have no idea what that would be like. I've never tried.
Jay Greene: I think the solution to the sort of individual individualistic society and the external and internalized ableism is like connect with other people who can validate your experience and say Hey, you're not alone in this.
And find ways to. Find ways to find like fulfillment and, contribute in ways that feel meaningful, that also don't exhaust you.
Rhy Wepaloki: I invented a language to describe myself within the world, and everybody has had to do that, whether we consider ourselves neurodivergent or not, because. Like colors. We all have different rods and cones, so we all see blue differently than everyone else sees blue.
And so [00:19:00] there are commonalities there, but we don't actually know how to perceive what those commonalities would be because colors are different for every person who has a different fingerprint or a different pattern of how their I see. And so we've all created these different languages.
Mel Houser: What I wonder about is. Language can also be activating to, to some people and having self-awareness to know what activates you. And then, with a dysregulated nervous system where one just doesn't have access to the parts of their brain that are necessary to bridge those gaps and the pursuit of common language, it's like too late unless you're self-aware and can like return. Activate return. But when that doesn't happen, you might have some people who can observe a pattern. Now there's that coping mechanism, there it goes. But when you're in it and you don't know it, and you don't have a self-awareness, it makes it just very hard. And so what I have appreciated about this community [00:20:00] is that because there are so many people who are actively not only pursuing their authentic self, but are learning about themselves and acquiring language to better understand themselves in addition to the language that they may be made up. And have a narrative that's that narrative actually changes based on the language that they hear from other people, which becomes, a more it's just a different narrative.
Rhy Wepaloki: And yeah, I think that, I think that helps a lot. Yeah, I think it does. I think absolutely it does, and we come together at ABB or anywhere else. We have to choose to want to know the other person's language and how to fit it within our own in order to have a conversation that's functional, because otherwise our coping mechanisms get in the way and duke it out in a [00:21:00] non-functional, useless pattern, but echoes what we see on TV every day and what we hear on the radio and listen to in songs and what we see in the government and everywhere else on the planet.
So the language there I think is something that we find together here.
Mel Houser: When access needs are not met, it creates loneliness, not just emotionally, but physically. It lives in the body, and the antidote is not self-reliance or self-regulation or all the other things that people talk about. It's community. It's community care. Part of community care means creating spaces where people don't have to hide what they need, where support doesn't depend on meeting some kind of independence or proving it or earning it.
Care is shared, flexible, and shaped by the people giving and receiving it. That's what we're practicing here at Brain Club. If you wanna keep exploring with us, you can join our Live Brain Club events most Tuesdays at 6:00 PM Eastern. You can also dig into our free digital resource [00:22:00] library with all the recordings from the past four years at allbrainsbelong.org.
You're not alone, and we're glad you're here. See you next time.