On the Podcast: Laughter, Loss, & Life with Chronic Illness—Finding Joy in the Hard Stuff
In our most recent episode of Out of Session with Kindman & Co., we got together to discuss the physically and emotionally complex experience of being a Spoonie and the importance of being together in community.
Episode Summary
The term 'Spoonie' represents far more than a medical label—it's a profound identity of resilience, vulnerability, and collective understanding for those navigating chronic illness. Rooted in Christine Miserandino's groundbreaking Spoon Theory, this concept transforms how individuals with ongoing health challenges conceptualize their daily energy, limitations, and survival strategies.
Spoon Theory fundamentally reframes disability and chronic illness as an intricate negotiation of personal resources. Imagine starting each day with a limited number of metaphorical 'spoons', where every task—from showering to preparing meals—requires expending these precious units of energy. For chronically ill individuals, these spoons are dramatically fewer and must be carefully allocated, often meaning difficult choices between essential activities and social engagement.
Our conversation reveals the complex emotional landscape of chronic illness that extends far beyond medical diagnoses. The participants—Kaitlin, Anna, Dani, Clarissa, and Gaby—illuminate the profound psychological journey of acknowledging and accepting one's disabled or chronically ill identity. This process isn't linear; it's a nuanced dance between denial, grief, adaptation, and ultimately, radical self-acceptance.
We discuss how community transforms individual suffering into collective strength—laughter, vulnerability, and candid discussions about bodily experiences that are often stigmatized create a powerful form of collective healing. Chronic illness communities help to normalize conversations about medical challenges, bodily unpredictability, and the exhausting labor of healthcare navigation that most chronically ill people experience in isolation.
We also explore medical gaslighting as a significant theme, with participants sharing experiences of healthcare systems that frequently dismiss or minimize their lived experiences. The group emphasizes how finding physicians who genuinely listen and validate their symptoms becomes a crucial turning point in managing chronic conditions. This validation isn't just medical—it's deeply personal and psychologically transformative.
Humor emerges as a critical survival mechanism. The participants don't merely cope with their conditions; they develop a sophisticated, nuanced relationship with their bodies' limitations. Their ability to laugh about embarrassing medical moments, unexpected bodily responses, and the absurdity of chronic illness demonstrates remarkable emotional resilience. As Kaitlin notes, this isn't about minimizing pain but about disarming its potential to overwhelm.
The episode powerfully deconstructs ableist narratives that demand constant productivity and minimize the complexity of living with chronic illness. Participants discuss unlearning internalized messages about 'pushing through' and instead cultivating practices of radical self-care. This means recognizing that rest isn't laziness, that medical accommodations aren't weakness, and that one's worth isn't determined by conventional metrics of productivity.
Online and in-person communities play a crucial role in supporting chronically ill individuals. The group highlights how digital spaces—like Facebook forums and specialized support groups—provide lifelines for people who might be physically isolated or unable to consistently engage in traditional social settings. These communities offer not just practical information, but profound emotional validation.
The intersection of disability, identity, and healthcare becomes a nuanced exploration of human experience. Participants like Gaby discuss moving between identifying as a 'Spoonie' and understanding themselves as ‘disabled,’ revealing the fluid and complex nature of disability identity. This conversation challenges simplistic, binary understandings of health and illness.
Ultimately, this episode is an exercise in collective care, emotional intelligence, and reimagining wellness. By centering the experiences of chronically ill individuals, the conversation transforms the potential narrative of victimhood into a celebration of adaptability, community, and radical self-love. It's a profound invitation to listeners to expand their understanding of human resilience and interdependence.
For anyone navigating chronic illness, feeling unseen by medical systems, or seeking deeper understanding of disability experiences, this episode offers more than information—it provides a radical model of community, compassion, and collective healing.
Read on for the full transcript of the conversation and listen to the episode on Spotify!
Jesse: You're listening to Out of Session with Kindman & Company, a Feelings Forward podcast where we have messy, real conversations about being human.
Jesse: In this episode, we get a glimpse into the Spooniverse, a group of members in our community who are navigating chronic illness.
Jesse: Kaitlin, Anna, Dani, Clarissa and Gaby share personal stories about what it's like to live with chronic illness while also holding space for others in their lives.
Jesse: They talk about what it means to identify as a Spoonie, a term rooted in spoon theory, and how living with chronic conditions reshapes identity, relationships and the very concept of care.
Jesse: From self doubt and medical gaslighting to moments of humor and radical acceptance, this conversation gets into the emotional layers of navigating the world and bodies that don't always cooperate.
Jesse: This episode holds both laughter and loss, survival and softness, and is a beautiful demonstration of collective care.
Jesse: Without further ado, here's their conversation.
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Kaitlin: Hi, I'm Kaitlin Kindman.
Kaitlin: I Use she/her pronouns.
Kaitlin: And I am one of the co-founders of Kindman and Company.
Dani: I'm Dani.
Dani: I'm a licensed marriage and family therapist and I'm not sure what else there is to say about me.
Clarissa: I am Clarissa. I am the care coordinator here with Kindman and Company.
Clarissa: And that's me.
Anna: And I'm Anna. I'm a licensed clinical social worker and I also use she/her pronouns.
Gaby: I'm Gaby. My pronouns are she, they.
Gaby: I am also a licensed marriage and family therapist at my own practice called Raíces Therapy.
Kaitlin: And we're all Spoonies, some of us more openly than others, which I think is like one of the first things we were thinking about talking about today.
Kaitlin: Anna and Clarissa and I were quickly chatting about asking ourselves in this group a question of, like, how long did it take you to come out? To come out.
Kaitlin: To come out, exactly. To accept ish that you have chronic illness.
Dani: This feels so public.
Dani: A public coming out.
Gaby: Yeah, this feels scarier than coming out.
Kaitlin: Whoa.
Kaitlin: Are we serious? No, no, no, no, no.
Kaitlin: Gab.
Gaby: I think that I have been a Spoonie my entire life.
Gaby: It's been pretty dynamic though. Like, it's ebbed and flowed. I think more Spoonie heavy than some moments of my life and then to other moments where I've arrived now where I identify more with being disabled than being a Spoonie, I think.
Gaby: But I don't think that I really started identifying with being a Spoonie until I found community with other Spoonies who were sharing similar experiences with me.
Gaby: But that being said, it took like 20 years to really identify with being Spoonie or having Chronic illness.
Anna: It's a hard thing to admit.
Gaby: Yeah.
grappling with accepting chronic illness
Anna: I think I have a slightly different experience in that I became a Spoonie suddenly and in a very big way because of an allergic reaction that sent me to the hospital.
Anna: But I can remember vividly conversations that I had with you, Kaitlin, about how it was going to be better in two weeks and I just needed to take some steroids. And I think somewhere around the six month mark, you said something like, have you considered that this might not get better?
Anna: And I was like, no, absolutely not.
Dani: Why would I consider that?
Anna: So that was three and a half years ago.
The Long Journey from “Two Weeks” to “Three Years”
Anna: So somewhere in between two weeks and three and a half years, I think was when I came to terms with that maybe that was not gonna go away.
Dani: I do think, Kaitlin, you've become quite the, like, you know, there's like death doulas and like identity doulas. Like, you're sort of like the Spoonie doula of the group.
Anna: Like, how do we help you come.
Kaitlin: To come over here?
Kaitlin: Yeah, yeah.
Dani: I think that's how I got wrangled in a bit.
Dani: I don't know.
chronic illness & identity formation
Dani: Identity stuff is so interesting.
Dani: And I am sort of realizing real time how talking about this, although we're joking, like, does feel similar to coming out. Like, there are some interesting overlaps that I haven't really considered, but I do feel like I am in this denial meets a version of acceptance place.
Dani: Just because I think from where, from my own mind, I'm like, oh, my.
When Your Illness Doesn’t Look Like Everyone Else’s
Dani: I don't even like it. I don't even know what to call it. A chronic illness autoimmune disorder looks a lot different than other people in the room.
Dani: And I think because it looks different, I minimize it.
Dani: So I'm in the process of probably accepting it.
Gaby: Allegedly.
Dani: Allegedly.
Dani: I think I'm in the wrong podcast.
Kaitlin: You're a peer pressured Spoonie.
Kaitlin: Yes.
Kaitlin: Well, we're so glad you're here, though.
Anna: Yeah. To be clear, we didn't peer pressure you into having an illness.
Kaitlin: Yes.
Dani: Yes.
Kaitlin: We peer pressured you into having community and support for your illness.
Dani: This. Yes.
Dani: For the listeners. Yes.
Kaitlin: Yeah.
Clarissa: I think for me, I had no real idea what the Spooniverse or being a Spoonie was just dealing with women's issues for a really long time. I kind of just accepted that that was going to be life and had a really hard time with the healthcare system.
Clarissa: But I think joining this group and finding community and being able to relate to you all in your life experience has really shown me that.
Kaitlin: I am.
Clarissa: A Spoonie, and sometimes that does Sometimes there is a voice in my head. It's like, 70, 30. Like, I am, and then, am I?
Clarissa: So I think the community here and being able to relate and share has really, really helped and really allowed me to see that I do need care.
Kaitlin: Yeah. I'm realizing that it was unfair to ask this question because I don't know that I actually have an answer.
Kaitlin: I think, like, Gaby was saying, like, I've been sick my entire life. I, like, cannot remember a time when that wasn't true.
Kaitlin: But I don't know, like, at what point it really sunk in for me that this is a chronic experience and that it's not gonna get better.
Kaitlin: I feel like maybe I've had that knowing at different points and then kind of lost it again.
Kaitlin: I'm like, no, maybe there is hope. Like, if I do this one thing or if I see this one doctor and da, da, da, da, da.
Kaitlin: And then every time that there's, like, a flare and then that doesn't happen, that it goes away, it's like, oh, it's a deeper knowing now that, like, no, this really is chronic. And the kind of ups and downs of, like, I feel better, I feel worse, are just part of the experience of having chronic illness.
Kaitlin: But I think for me, like, in the last maybe six years, since I've actually gotten connected with a team of doctors who have given me, like, real diagnoses and then treatment plans, and I've been able to educate myself more on the diagnoses that I have.
Kaitlin: And I feel like I actually have doctors who listen to me and believe that what I have is a real thing that in some ways that has maybe made it feel more real and, like, I've been able to accept it in, like, a kind of a different flavor of acceptance.
grief & loss: The Experience of Living with Invisible Illness
Anna: I mean, as you were talking, I was thinking about grief, that I think accepting you're a Spoonie is ultimately a grief process that comes in waves.
Anna: But the other thing I was thinking about is invisible illness, and that it can be a really hard thing to accept when the feedback that you get from the world is, you're fine, you seem fine.
You Don’t Look Sick: The Toll of Medical & Social Gaslighting
Anna: So I think that's why having doctors or people validate that your experience is real can be so valuable.
Kaitlin: Mm.
Gaby: It's got me thinking, too, about, like, the intersectionality within being a Spoonie. And I could honestly talk about that for 30 years. But even as you were sharing, like, having diagnoses, I'm thinking about people who don't have diagnoses but know that there's something wrong. With them is like a whole experience in itself, too.
Gaby: And I think all of us here have experienced that at one point or another.
Gaby: And I think that that's why Spoonie community is so powerful. Because you have a group of people saying, I don't know what's wrong with you, but that you're not. There's something going on.
Gaby: Feels really important.
Kaitlin: Right. You're actually unwell.
Kaitlin: I see that. I hear that. I believe you.
Sharing the Truth: “Coming Out” as Chronically Ill
Kaitlin: Yeah. I also was thinking about invisible illness.
Kaitlin: How.
Kaitlin: And like, that this idea of coming out that, like, when someone can look at you and think you don't look sick. Which is kind of amazing that people still say that.
Kaitlin: There is this thing where you have to regularly share, like, I am sick, I am disabled, I am chronically ill in this way.
Kaitlin: And like, almost convince people that that is true, because what they see doesn't match their idea of what a disabled person looks like or what someone who is so sick they have to take off work, cancel plans, go to the hospital, go to the urgent care. All things that all of us have done many, many times.
Being Unseen & the Pain of Relational Trauma
Kaitlin: And how. I mean, I know for me that, like, always comes up against, like, one of my, like, core attachment wounds, which is feeling unseen.
Kaitlin: And this is like, just a daily exercise in that relational trauma. Yeah. Thanks, body.
Anna: Congrats.
Kaitlin: Yeah.
Kaitlin: Wow.
Dani: Thank you, universe.
Dani: Spooniverse. My bad.
What Is Spoon Theory? A Therapist’s Take on Energy, Choice, & Chronic Illness
Kaitlin: Spooniverse. I know. I actually was thinking, should we say what a Spoonie is?
Kaitlin: Are we assuming that everyone knows what that is?
Anna: Yeah. 12 minutes in. So.
Clarissa: Yeah.
Kaitlin: Anyone?
Dani: Anna.
Gaby: Anna, you started.
Anna: You said so well, but I. I can't remember the name of the person.
Anna: Spoon theory.
Gaby: I have it written down.
Explaining Spoon Theory in Simple Terms
Anna: All right, we're gonna get that for you. You explain, essentially, this person whose name we're gonna tell you came up with an idea to try to convey what it feels like to have a chronic illness to someone who does not.
Anna: And the example that they used was spoons.
Anna: And sort of like the regular person gets, you know, relatively, it feels like an unlimited number of spoons in a day.
Dani: Right.
Anna: 50 spoons in a day, 70 spoons in a day.
Anna: And every time you do something, take a shower, go to work, blow dry your hair, prep dinner, like, that costs a certain number of spoons.
Anna: And as a person with chronic illness, you're essentially just working with a deficit of spoons.
Anna: And so if you only have five spoons in a day, you have to choose how you're going to use them.
Anna: And that might mean giving up on something like hanging out with a friend that you really want to Do. Because something like take a shower just has to come first.
Anna: And so chronically ill people have taken on the moniker Spoonie to describe themselves.
Gaby: Christine Miserandino, Spoon Theory.
Kaitlin: Yeah.
The Power of Community for Chronically Ill Therapists
Anna: And so this group that we're in right now started in the way back as Kaitlin and I were in individual supervision. She was my supervisor when I was an associate here.
Anna: And when I got licensed and Gaby got licensed, we joined forces into a little triad.
Anna: I just looked up the date. It was November 2022.
Kaitlin: Wow.
Anna: Wow.
Spoonie Supervision & Building Therapist Community
Anna: Yeah. And then we started, like, a small Spoonie group. And then.
Kaitlin: Which was called Spoonie Supervision.
Anna: Which was called Spoonie Supervision. And then since it has grown into what it is now, the Spooniverse.
Kaitlin: Right.
Anna: And we have just recruited our friends as they've fallen like little flies.
Dani: Wow. True.
Dani: Boy, did I fall fast. Violently, violently.
Kaitlin: Yes.
Dani: That was a really great summary.
Kaitlin: Yeah.
Chronic Illness, Denial, & Internalized Ableism in Therapists
Dani: I never expected that I would be in the Spoonie group.
Dani: And there are times that I definitely did not want to join, and there's times that I don't want to join now, but I think because it just highlights this thing in my life that I just wish wasn't there.
Dani: And talking about the spoons, I think I, like, make up imaginary spoons, maybe, or sporks. Yes.
Anna: I'm like, well, here's a spork.
Dani: It's like a spoon or spoons on credit, for sure. Like, I don't know where I'm getting these spoons from, but I just lie to myself and pretend that I can do all the things.
Anna: Because I think that a lot of.
‘Pushing Through’ & Performing Health
Dani: How I was raised was just like, push through, keep going, let's not check in with the body. And it was sort of praise to work past and work through.
Dani: And I'm really good at it in a bad way.
Kaitlin: Don't you think that's, like, the kind of additional layer of trying to accept and embrace having a chronic illness 100%.
Dani: Because if my life isn't impacted, I'm telling myself, right, like, oh, well, my life isn't impacted. I'm still doing all these things.
Dani: Why should I be, like, taking up space in this group? Or why should I be talking about something that maybe I don't actually need care for.
Anna: Which I think is denial, which is a noted part of the grief process.
Gaby: Let's go back to our grief expert.
Anna: Well, I just. I'm also thinking about. I'm just thinking about this group and how each of us has, like, leaned into this space over time. And for people listening who maybe are wondering, am I spooning I'm thinking about all the ways that this group has been able to hold the complexity of that, including the moments where someone in the group was like, I'm charging, I'm gonna put all this shit on credit.
Anna: And people in the group have been like, uh huh, okay. Like you sure? And then sometimes it's like, yeah, and we'll hold you when you like. I think part of the process is also like a denial and a, like a self punishment. Almost like I'm gonna do this just because I want to, even though I know it's bad. Like I'm gonna do the thing. Cause I want to be in agency and in control.
Anna: There are so many limitations. Like we're laughing here and making it sound so fun. And it is not fun a significant portion of the time.
Dani: No, no, I think it's definitely not fun.
Dani: And there's so many creative ways that the body will take you down.
Kaitlin: Oh yeah, I know. The body's like, well I already threw this and you, you kept at it. So let me now throw this and this and this. Like when are you gonna listen?
Dani: Like if I carve a spoon out of wood, surely that counts, right?
Kaitlin: But I think that like that, that piece that you were talking about of like not being raised to really consider your body and even just notice what's happening, right? Not making space for that. Instead you just push through and like actually the way to keep going is to not feel what's happening in your body. Right? That's like an impediment or an obstacle.
The Grief of Being a Spoonie: Denial, Agency, & Emotional Fatigue
Kaitlin: That's like the, the kind of additional layer of grief and non acceptance of being a spoonie because you're like, well fuck. Like firstly, now I'm dealing with being sick. And especially for people with chronic illness, it's such a prevailing experience to take years and years and years and years and years and years to find an answer and get connected with the doctors who maybe can help you.
Kaitlin: But then there's like.
Kaitlin: And also I have to pay attention to my body. I have to like listen to the sensations. I have to try to notice when I'm getting close to overdoing it.
Kaitlin: Not just like blowing through that and then keep going.
Kaitlin: And those feel like two different pieces to me that are confronting in maybe different ways.
Kaitlin: And it's all exhausting.
Kaitlin: Also because fatigue is like such a problem for spoonies to begin with. And then like having to listen and like look inward in your body in a way that you've been taught the rest of your life not to.
Dani: Yeah, oftentimes I'm Like, I don't even know how to assess the spoons.
Kaitlin: Yeah.
Relearning to Tune In Without Spiraling
Kaitlin: But interestingly, like, I actually feel like some of my work as I've gotten older and, like, some of my acceptance of just living in a body that doesn't do what a lot of other people's bodies do or does do things that other people's bodies doesn't, is actually maybe sometimes paying less attention to my body because I feel like I've gone through periods of being so hyper vigilant of, like, oh, my gosh, what is. What was that? Am I sick? Do I need to do something? Like, is this gonna ruin the whole day for me? Da, da, da. Which creates more anxiety and, like, just kind of noticing the sensations as they happen and that they don't actually have to be an indicator that something is getting worse, but then sometimes they do have to be an indicator.
Kaitlin: That's also exhausting. Huh.
Dani: I felt instant anxiety when you're like, what if? I'm like, I know. What if.
Dani: Yikes.
Gaby: I think that something.
Gaby: What you were saying, Kaitlin, resonated.
Coping with Chronic Pain Through Somatic Awareness & Selective Attention
Gaby: A lot of my own therapeutic work with my therapist has been as someone who A lot of the ways that my disability manifests is through chronic pain, is making the choice of, like, acknowledging that there is pain in my body and also sometimes shifting to a different part of my body.
Gaby: Sometimes that's really hard because sometimes the whole thing hurts.
Gaby: But, like, having that autonomy to choose of, like, I hear you knee. You are in so much pain. And also, like, right now, I need to feel focus on my wrist because that is how I'm going to cope. And, like, that balance of, like, healthy dissociation or not, like, as a coping skill, like, where do we lie there is tough.
The Mental Health Loop: Chronic Illness, Anxiety, & Self-Gaslighting
Anna: Well, it's hard also when so much of the experience is about, like, knowing yourself or that's what it feels like, right? Knowing your own limit, knowing your own body.
Anna: And then when you layer that with, like, not being seen by other people or the feedback you get. I mean, when you brought up the anxiety thing, I felt that, and I thought that was.
Anna: I just feel like sometimes I gaslight myself.
Anna: I'm just like, oh, I think this is really wrong. And then I'm like, no, I don't know. Everyone seems like doctors are telling me this is fine, and they can't find anything, so probably I'm okay, so it's my fault, so I'm the problem. And then you get hooked into this spoonie loop of physical health, mental health.
Introducing the ‘Chemical Spoonie’: When Chronic Illness Lives in the Brain
Anna: We have coined another term. I'll just put it out there so it's copyrighted. That you can also be a Chemical Spoonie, which is when you have problems in your brain, which is an organ.
Anna: So I think about that sort of stuff where also being a Spoonie of course creates hyper vigilance in the body, which of course creates. Creates anxiety in the body, which then can be a feedback loop that is just really hard to get out of.
Shame, Fatigue, & Fuck Town
Kaitlin: Right. Which of course creates more physical symptoms. And around and around we go and then we're just on this spoonie spiral to fuck town.
Kaitlin: Nice.
Dani: That like almost sounds exciting, but I know that the fuck town you're talking about is not the exciting one.
Kaitlin: What do we usually say?
Kaitlin: I forgot.
Anna: I think that's it.
Kaitlin: The Spoonie spiral the fuck down.
Anna: Of course, yes.
Kaitlin: And then we're all just sad.
Internal Barriers to Self-Advocacy
Clarissa: There's a piece, Anna, that kind of came up for me as you were talking and it's both of being raised to push through it and finding some sort of like dopamine response for getting things done while you're feeling ill. That just feels like so much of an accomplishment.
Clarissa: And then there's this other piece of also being raised with the like, no, you're fine, just keep going mentality where that for me created a lot of obstacles and barriers for me to advocate for myself and for me to share what I was going through, whether that was symptoms of my body or like how it affected my mental health, not being able to connect and have community and support.
Clarissa: And I think even to this day it still feels hard to share, which is why I love this group so much.
Clarissa: But yeah, it's still kind of difficult to voice your concerns, especially when folks in the medical field are, you know, don't have any resolve or what they do. Have, you know, done your loopholes of research and dove into that and you're like, okay, this probably not is the best way, but you know, you have. You're left with nothing.
Dani: Have you tried Advil?
Gaby: Don't forget 600 milligrams I'd be broken.
Dani: Yeah.
Anna: 800 is too hard on the kidneys though, friends.
Kaitlin: Yep.
“It sucks here, but sometimes it’s kind of nice.
”
Why Spoonie Community Heals What the Medical System Misses
Kaitlin: What do you think it is about having a group like we all have different diagnoses in this group and different experiences, like different presentation of symptoms.
Kaitlin: What do you think it is about having a group of people who are all spoonies that helps you feel more able to share and like have more self trust. That's what's happening in you is real. Even if a lot of the people outside in the medical system and society are really questioning that, like, for Clarissa, but also anyone.
Clarissa: Yeah, I feel like the shared experience.
Kaitlin: Of.
Clarissa: Not having answers from the medical field, like, helps to connect with my own experience.
Relating Through Shared Symptoms, Not Shared Diagnoses
Clarissa: Like, there's been times when folks in this group have shared, like, their issues with sleep or their issues with, you know, women's reproductive issues. And I'm like, oh, my God, I've been dealing with that for, like, how long? And I've just been.
Clarissa: Been dealing with it and accepting that that is just life and connecting with, like, with folks who have that experience of, like, no, this.
Clarissa: I have that experience too.
Clarissa: And it helps when other people are willing to listen and support.
Clarissa: And also there still is that layer.
Kaitlin: Of.
Clarissa: Culture that is.
Clarissa: Well, the doctors don't know anything, and we've tried, so that's pretty much all we can do as, like, you know, a family to support you.
Reducing Shame by Sharing the Gross Stuff
Anna: I think for me, the first thing that came up in response to your question is that bodies are really gross.
Anna: And I think that is true for everyone.
Dani: Right?
Anna: Like, all bodies are gross and they do gross things. And I think if you have a spoony body, it does extra gross things extra frequently.
Anna: And it's just been so validating and so humanizing to be able to share those things. Like, it's. It's the reduction of shame of just being like, yeah, no, my body is doing this. Has anyone else's body ever done something like that? And it's not even always that someone else can say, yes, my body has. Although that, of course, course is very validating. But just to have people be like, oh, yeah, you know, like.
Anna: Or, you know, we've, like, had lots of shared experiences of, like, bad flights, bad colonoscopy prep. You know, like, there's these things that are just, like, when you're in them and when they're happening, it feels so on top of how sick you feel and how.
Anna: How much you're trying to hide it, it feels just so embarrassing to, like, be in a body that's just not responding to your will.
Shared Humor as Medicine
Anna: And so to be able to tell other people and laugh about it, you know, it's like, at least there's that. Like, at least it's funny in the end with my friends, you know?
Kaitlin: Yeah.
Gaby: I'm thinking about moments where I've been like, oh, my God, I just peed myself.
Kaitlin: I cannot wait to tell the spirit again.
Gaby: Just like, a level of camaraderie of like, oh, my God, someone's gonna hold this with me and laugh because it's funny. And also they're gonna Be like, oof, I remember this time when this thing happened to me.
Kaitlin: But that's a moment you would have had to just laugh at yourself alone.
combating the isolation of chronic illness
Gaby: Oh, yeah.
Kaitlin: Without other people.
Kaitlin: And now you're like, I have to share this.
Kaitlin: I can't keep this to myself. This is like a golden nugget.
Gaby: That would be a disservice to my fellow, many spoonies.
Kaitlin: Yeah, exactly.
Kaitlin: Exactly.
Kaitlin: I think we share a lot of things on our, like, group text spread in that way.
Dani: Totally.
Kaitlin: Just like, hey, just need you to know this is what's happening with me right now.
Anna: Or we take each other to urgent care.
Anna: Or, you know, I just. I think about people who are trying to do this alone, and it's just really, really hard, like, because of all the things that we've named already. And also, you're just alone. Or maybe you're surrounded by people who don't have chronic illness. So their feedback is like, either, I don't know, or at worst, like, why can't you just blank?
Anna: And it's just so.
Anna: It's just so different to have even one other person in your life who can understand what that experience is like.
Kaitlin: Yeah.
Kaitlin: Yeah.
Gaby: That's one thing I'm thinking about. If you are a listener.
Gaby: Spoonie. You think you're Spoonie. Maybe you know you are.
Gaby: And you're struggling to find community.
The power of online communities
Gaby: An online community, too, can do this, I think. And, like, if. If you're struggling to find one, that is an excellent place to start. Because I think that part of, like, being a Spoonie, too, is, like, sometimes you can't get out of bed to meet people. So, like, texting someone or seeing a post that resonates can. Can do that.
Gaby: You too?
Kaitlin: Absolutely. I have been in and continue to be in a lot of Facebook, like, forums for people with shared diagnoses. And, like, I find that so helpful. I mean, it's a lot of, like, hey, I have this weird thing. Here's the picture. Do other people have that, like, what Anna's describing?
Kaitlin: Or, like, does anyone have a doctor who does this?
Kaitlin: But it does feel so normalizing. And again, just like a place that, you know, you can go to ask questions when you cannot get anyone else to listen to you, or you're just so overwhelmed by how unwell you feel.
Kaitlin: And I think that is a good resource if you, like, can't have, you know, in person, people that you can go to or both. I mean, I do both, but I'm, like, also reflecting on times when being a Spoonie has felt so.
Kaitlin: So isolating.
Kaitlin: For me and where I like, couldn't find people in my orbit who could really understand or have some kind of shared experience and just how painful that is.
Kaitlin: And like, and just adding additional overwhelm to being sick.
Coping with a Life That Keeps Changing
Kaitlin: And like, being disabled is like another full time job with having to advocate for yourself and spend a lot of time going to doctors appointments and going to different pharmacies to get your compounded medications and going to the ER because no one can figure out what's wrong.
Kaitlin: And just like so much helplessness and powerlessness and like, I'm feeling for my younger self, like thinking about that, but also just really feeling for people who haven't found a community yet and that maybe the people in their life like, really just can't understand what it feels like to live with something that's ongoing in this way and so debilitating.
Dani: Or.
Kaitlin: Like, don't want to see it too, you know that like, I know. I've also felt like, oh, am I gonna talk about this again?
Kaitlin: Like when I get together with my friends. But also if I'm not talking about it, I'm like, like ignoring like a huge part of my life and my daily experience.
Kaitlin: But it doesn't feel good to be the person who's always like, bringing something that's a bummer, you know?
Anna: But I think that's why this group matters so much. I mean, I think part of why people don't, who are not spoonies, don't like hearing it over and over again is because it makes them think about death and like bodies and bodies not working, which is a process that will happen to everyone eventually.
Anna: And I think that like being in a group of spoonies, like, I have never thought here, like, wow, someone here is being a bummer.
Clarissa: We're all being a bummer all the time.
Anna: And I don't even like, think of our general group attitude as a bummer. I mean, definitely we talk about hard things and sad things and feel those feelings. But I do think there's just something different when your baseline, like acceptance is like, yeah, we are all in bodies that are moving toward death.
Anna: And like, that's just how it is. And so like, not a bummer at all.
Anna: Well, and like, okay, so if that's true, then like, what are, what do we want to do?
Anna: How do we want to be together?
Kaitlin: I feel like my, my personal pet peeve in my life right now with the age that I am, because like part of what, what you're talking about, like what happens before death is aging is like Now a lot of my friends are, like, for the first time in my life, like, hurts. That hurts.
Kaitlin: It's so hard.
Kaitlin: Like, what am I gonna do?
Kaitlin: And there's part of me that's like, I so get that. Like, I have so much empathy. Like, I. I really couldn't understand this more. And then another part of me is like, man, I've been old and aging my entire life.
Kaitlin: And, like, you're just getting here, so, like, it's gonna take you a while to get adjusted. And part of me feels really envious about that too.
Gaby: You know, that their knees didn't hurt since third grade.
Anna: Yes, exactly.
Kaitlin: Like, wow. Okay. You've got a lot to learn, like, about being in a body that doesn't just do all the things you wanted to do.
Kaitlin: Welcome.
Kaitlin: It also sucks here, you know, but not a bummer.
Dani: Well, it's interesting that we can.
Dani: We can laugh about it, but I don't feel. I don't ever feel like we're laughing to minimize or laughing to, like, discredit or avoid. Like, it's genuine laughter in how messed up something is or because some of the stuff is actually funny, even though it's deeply painful.
Anna: So it can be both.
You Won’t Always Feel This Sick: Chronic Illness & Shifting Resources
Dani: I appreciate that. We can just kind of switch in and out of those spaces and cry, laugh in the same sentence, and then do it again the next week.
Anna: Well, things change.
Kaitlin: Yeah.
Anna: I also. I think that's one thing that being a spoonie helps you hold better.
Anna: You know, like, you're projectile vomiting. You won't projectile vomit forever.
Anna: Like, bodies just do different things at different times. And, like, experiences are temporary. I mean, some of them obviously are ongoing, but, like, I don't know. I just think it helps you modulate reality in a different way.
Dani: I think that was something that was really helpful that you told me, sort of like when I was at my most sick and most ill, was like, you won't be in this place forever where you maybe don't have a diagnosis, don't know how to help yourself feel better, don't know what kind of rest you need. Like, I had so many questions, and it was helpful to know, okay, at some point, maybe I'll have more answers.
Dani: Even though this thing might not be resolved and fixed, I'll be well resourced.
Dani: And I think that is true.
Dani: I'm, like, two years out from when I felt the worst, and I do feel more resourced. And when I feel ill, like, I know what to do and what I can't do or want to. Like, what I need to make space for in my life. So still living with it. But I know things that help.
Choosing Rest, Breaking Rules, & Living fully
Kaitlin: And sometimes you know those things and choose not to do them anyway.
Kaitlin: Not you. I mean, you.
Kaitlin: Yes, you, Dani. Do that. But so do I. I meant one like, right. That like it.
Kaitlin: It is such an exercise in feeling helpless and powerless and like that. I think there are those times where you're just like, fuck it.
Kaitlin: Like, I'm just gonna have a lot of makeshift spoons that I know because I know enough about this now. I know I don't really have them.
Kaitlin: But also the trade off is feeling like I'm isolated at home or I'm like giving up too much and refusing to kind of make my life small. And I can't keep doing that forever. But I could probably do it for like a week, you know, For a while.
Gaby: A worthwhile week.
Anna: Yeah, for sure.
Kaitlin: Like, I think it is kind of finding the balance of like, I. I'm not always gonna play by these, like, rules of what is good for me and all the things I have to do and all the ways I have to change my diet and all the medicines I have to take and avoiding anything that's not this or that or blah, blah, blah.
Kaitlin: Like, you still gotta live.
Dani: Definitely, definitely. And I think how we.
Dani: I'm just gonna like, plug in something for future for folks that are listening right now. But I think if this. If this conversation resonates with you, if you feel curious about it, if you want to be in a group that sounds maybe similar to this, I am going to be running a group sometime in the fall.
Dani: The details will come out when they come out. Still working through the exact, I don't know, time frame and whatnot. But I'm going to be running a Spoonia group for folks that can make it in person.
Dani: It'll be at our office in Highland park and I'd love to get that group filled so that you all can feel the sense of togetherness and hopefully not feel so alone in your illness.
Clarissa: Yeah.
Anna: Welcome to the Spooniverse.
Anna: It sucks here, but sometimes it's kind of nice.
Kaitlin: It sucks here and.
Kaitlin: Yeah, I know. I want to be a member of your group.
Dani: You're a member of this. I'm a member of this group. You're a member of this group.
Kaitlin: I want to be a member of.
Anna: Every Spoonie group because maybe we'll make guest appearances.
Dani: That would be cool.
Kaitlin: Rotating resident Spoonie of the week.
Anna: Well, definitely. I mean, if it's a group for Spoonies, By Spoonies. You're gonna need subs Right.
Gaby: You're not gonna make that group.
Dani: Not me, because I don't know how.
Anna: To ask for help.
Dani: Yes.
Kaitlin: No, I was actually thinking, it is amazing that all five of us are here today.
Anna: We are here. We did it.
Dani: We did it.
Kaitlin: I was worried that we wouldn't all be able to get here with Spoonies so unpredictable. We just snapped.
Kaitlin: But I'm proud of us for doing it.
finding humor & play as acceptance
Kaitlin: Can I also just say, like, before we wrap up, that I was just thinking about humor and laughter and how when we meet, because we meet at this time, when we're recording, we meet on Wednesdays, people was like, I heard. I knew you were all in Spoonies because I heard laughter coming from the room. And it is funny, quite literally funny, but kind of surprising, maybe, to think about how often we laugh given, like, why we come together and how we've come together and, like, through the shared experiences that we have that are really so hard and so painful and so exhausting.
Kaitlin: And I think that that is also part of, like, having acceptance of having chronic illness. Right? Is finding the humor.
Kaitlin: Like, that's such a huge piece of having resilience and the camaraderie and, like, bodies do really weird things and are gross and make weird noises and, like, you have to really put your shame on the shelf when you, like, gotta ask for help when things are going wild.
Kaitlin: And I think that, like, it's really liberating in some ways. Like, I. I would never be the person to say having a chronic illness is a gift in this way. No, fuck it. It's terrible. I don't recommend it for anyone. One out of five stars.
Kaitlin: But, like, that's generous. Well, I mean. Oh, okay. I mean, no stars.
Clarissa: No stars.
Kaitlin: But, like, I do think, like, there is power in being able to find laughter and humor and, like, that.
Kaitlin: It's like, it requires you to disarm yourself to be able to manage having chronic illness.
Kaitlin: And that then allows for a lot of connection and play and just like, oh, my body's doing this. Poor thing. You do. Oh, my gosh.
Anna: What?
Anna: Does anyone have something that will make us laugh as a carryout?
Dani: I don't know why I'm looking at Gaby.
Gaby: That's a lot of pressure. Like, something that's happened to me recently.
Kaitlin: Shit, I don't have one.
Gaby: Anybody phone a friend?
Clarissa: I think for me, Clarissa, doing it right now, I'm, like, itching. I have this really bad rash right now.
Dani: That's, like, a big, understood statement for folks that can't see the rash.
Dani: It is everywhere.
Kaitlin: Everywhere.
Clarissa: And I'm trying so hard not to itch.
Shame, Pee, & the Liberation of Saying It Out Loud
Clarissa: And I don't know why I didn't think about that one. But I think for me, what's coming to mind is, like, my pelvic floor issues recently and having to share with my team for the first time that I, like, peed my pants a little bit.
Clarissa: That was why I deleted and rewrote that team so many times. Because I was like, who do I send this to? I need to let someone know. But also, the first time I'm at work. Yes, I'm at work.
Kaitlin: These are people.
Kaitlin: So just like by show of hands. Although I guess we can't do it that way because this is for listening. Has anyone here not peed their pants?
Gaby: Say aye.
Anna: Like in life or at work?
Kaitlin: In life?
Kaitlin: Anyone in this room not pee their pants?
Dani: I'm pretty sure I have.
Dani: Yeah.
Anna: That's a, that's a nobody for the folks at home.
Anna: So on that note, thanks so much for joining us in the Spooniverse.
Kaitlin: Yeah.
Anna: And if you're. If you're one of us, so sorry and hopefully to get to meet you.
Kaitlin: So sorry, and welcome.
—
Jesse: Thanks for listening and joining us for Out of Session. Today's conversation gave us a powerful window into what it means to live with chronic illness.
Jesse: From navigating disbelief and internalized ableism to finding humor, friendship and solidarity in the mess.
Jesse: Gaby, Anna, Kaitlin, Clarissa and Dani share generously about what it means to manage energy, honor limits and build relationships that don't demand you pretend to be okay.
Jesse: Big thanks to them for letting us into their world.
Jesse: Today's episode is bringing you to Dani's therapy group.
Jesse: Dani Marrufo, one of the therapists you heard from today, is putting together a therapy group for folks navigating chronic illness and looking for support, community and a space to show up fully.
Jesse: If you're interested in joining or want to learn more, we'll link a group interest form in the episode description.
Jesse: We're also bringing you to the LA Spoonie Collective, an abolitionist mutual aid group led by and for chronically ill and disabled people in Los Angeles.
Jesse: They create spaces for collective care, political education and resource sharing that center disability justice.
Jesse: Learn more at www.spooniecollective.org.
Jesse: We'll see you next time when we're out of session.
NOTE -- Closed caption brought to you by DeepCast (www.deepcast.fm and www.deepcast.pro)
Featured therapist speakers:
Anna Kim is a Licensed Clinical Social Worker, a writer, and an adventurer. Anna works with individuals, intimate relationships, families, and groups to support growth and change. She is especially interested in grief & loss, identity & authenticity, and attachment, but appreciates all the infinite, complicated parts of being alive.
Dani Marrufo is Latinx, lesbian woman who is passionate about supporting Latinx, BIPOC, and LGBTQIA+ folks. She is constantly navigating the intersections of my queer identity & religion/spirituality and very excited about helping poly and queer-identified partners to feel more secure in their relationships, communicate effectively and compassionately, and bridge any relevant cultural differences to have increased curiosity and enjoyment in their partnership.
Kaitlin Kindman is deeply committed to providing socially just and anti-oppressive therapy. She really loves working with couples to improve their relationships and deepen intimacy, with other therapists and healers, as well as entrepreneurs and other business owners. Kaitlin finds true enjoyment in cuddling with animals, a just-right temperature cup of tea, feeling the sun on her face, and dancing in supermarket aisles.
Gaby Teresa is a Licensed Marriage & Family Therapist and owner of Raíces Therapy, Latina/mixed raced, social justice-oriented, and exceptionally curious. They work with individuals, intimate relationships, and families. She is passionate about supporting undocumented immigrants, Latinx, & BIPOC folks to explore and unpack the harms of systemic oppression & white supremacy and move towards individual and collective healing from racial trauma.
Clarissa Santisteban is the Care Coordinator at Kindman & Company. She is a fellow Spoonie, dog parent, aerial arts practitioner, and a lover of Paranormal Movies.
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