Read Time: 20 minutes

A few weeks ago, I had the pleasure of hanging out with Katie K. May at Group Work, which is a podcast all about group therapy. This was my second time as a guest on the show and we dived into using group therapy as a part of pain management. Below is the transcript of the podcast linked above.

[intro music]

Katie K. May: Welcome to Group Work, I am your host, Katie Kay May, and I interview mental health therapists to find out what happens in the space where group therapy takes place. Take a deep breath and find your seat inside the circle. This episode of Group Work is about to get started.

Katie K. May: Lena McCain is a psychotherapist who holds a Master of Arts in clinical, mindfulness-based, transpersonal counseling psychology from Naropa University. Her drive and passions lie in the realm of interfaith relations and youth collaborations which she brings to Interfaith Bridge Counseling. Lena’s experience in spirituality and the therapeutic world acts as a reminder to our community, teens, and young adults that they are not alone in their experience of life.

Katie K. May: Heeeey, hi Lena.

Lena McCain: Hi, how’s it going?

Katie Kay May: Good, how are you?

Lena McCain: Oh, I am pretty good, not too bad for a Friday morning.

Katie Kay May: Oh, that’s right, it’s morning for you. You’re the end of the day for me, afternoon over here. So, yikes.

Lena McCain: Yeah I just like literally woke up an hour ago. [laughter]

Katie Kay May: It’s so funny, somebody that I work with also works at a school, and she messaged me the other day and she was like, “I treated myself to a mid-day latte.” And I was like, “Mid-day? I’m, like still in my PJ’s and haven’t brushed my teeth, it’s like 10 am.” Like this is not mid-day.

Lena McCain: Literally! It’s like just wake up and grab your first cup of coffee.

Katie Kay May: Exactly. Well, I am thrilled to have you back. You are, you know, season 2 repeat, because you knocked my socks off season 1, and you have so many great things to share. I did give you your formal introduction, but please, for the sake of our listeners, remind us who you are and why you’re so awesome. What are you up to?

Lena McCain: Well, my name is Lena McCain, and I am the founder and lead therapist here at Interfaith Bridge Counseling here in Colorado, and we provide individual therapy, group therapy, and community programming throughout the entire state and today I am here to of course talk about group therapy, but more specifically to talk about our Ehlers Danlos Syndrome group and how we use group therapy as a means to pain management, really.

Katie Kay May: Yeah, I love that, and it’s so needed, and I’m really excited to dig in and hear about the details about that today. I also have an intern working for me now, and her specific area of interest is chronic illness and disability, and giving, you know, counseling to that population, and so I’m like, “Sharon,” I’m like, “we’re gonna listen to this,” so you’re helping people across the nation by sharing this information.

Katie Kay May: You’ve already shared a fun fact about yourself in high school, so what are you willing to share? A favorite band? Fun story? Favorite movie? Something silly? Give us something about you.

Lena McCain: You know what’s funny, is that I knew that this was gonna - like, I was like, Katie isn’t gonna want me to repeat the same thing, and I was like, what am I going to say, and what really actually struck me, which I guess could be fun if we kind of circle it that way, is that I was diagnosed with my disability and my chronic illness in high school. And, like, I think in some ways, that can be determinetal, but it allowed me to have really cool party tricks when I needed to meet people because I’m really hyper mobile, so like while I don’t encourage people to do that if you’re hyper mobile, when you’re 14 and you’re trying to meet people, let me tell you, there’s nothing like being able to pop your shoulder out of its socket or bend in a weird way, to make people be like, “oh who are you, what are you into, dah dah dah dah dah?” [laughter]

Katie Kay May: Party trick is the right word for that, like it definitely would draw a crowd, so I understand how it could be a gift and a curse all wrapped into one as a teenager, right there. So break it down for us, because I get the sense that most people are not familiar with EDS, and I will tell you I only am because I know from social media, at least two therapists who have talked about this, and so I was curious and looked into it. But I wouldn’t have known otherwise. So I think as a starting point, tell me about what this group is and what is it that you’re supporting in an EDS Support Group.

Lena McCain: Totally, so EDS, Ehlers Danlos Sydndrome, there are 13 different types of EDS, and then recently hypermobility has been kind of umbrella’ed under there, there’s been a little bit of separataton. And really, when I’m talking about EDS, what I’m talking about is having a connective tissue disorder that severely impacts your life, day-to-day. And for a lot of us it’s invisible, but for a lot of us it’s very visible. And it impacts our lives in… nowher near the same way. There is not a single person who has the same.. unfolding of EDS. And so for me, I have hEDS, and what that looks like is… I easily - I’m hyper mobile - I easily sublax and dislocate, on flareup days my brain is really foggy and I can’t move out of bed. Sometimes - most of the time I think people with EDS need mobility aids to get through. And my group, in and of itself, is really around creating a community of peers who have the diagnosis or are in process of getting the diagnosis, who are experiencing their wide spectrum of spectrums and having a space that they can share it, and hopefully finding space of at least a peer or two who have similar symptoms, and also, people who get that we live with chronic pain all the time. And when you look at a doctor’s scale, their 1-10 pain, their 10 is our basic most of the time, so like, we’re always in chronic pain. And so like, what does it look like to navigate the world and know that most people have no idea what that feels like? And for us, like, we don’t know what a life is like without it.

Katie Kay May: Thank you for that explanation, and for breaking it down, and I’m already thinking as you’re sharing, how powerful this group can be for teenagers, who already don’t know who they are and are finding their place in the world, and then feel another layer of difference on top of that, to have that group support seems really critical.

Lena McCain: Yeah, absolutely. Especially because like, I mean, I was also diagnosed when I was 14., and so I have a bit of lives experience when I’m also talking to mu teens about what It was like to go through that piece, and it’s like you don’t really know things are different, until someone tells you you’re different, and so you’re like, “oh, so life is miserable? Ok cool, like, guess just add that to the box,” but then you learn that for most people, miserable is a different type of different. And so like, being like okay so not only am I different, but life is miserable, and it doesn’t get better. There’s no cure here. It only gets worse, actually, as you age. And that’s like a really heavy thing to hold as a teenager, especially for some of them who come from a a family who like, nobody else has it, even though it’s genetic, it didn’t show up for their family.

Katie Kay May: Yeah, so then tell me about what this looks like as teens join in, and/or are a part of this group, because from what I’m hearing, it sounds like they could come in at any stage of this diagnosis, or living with this, and so, my broad question is “how are they showing up for you, and what does it look like when they’re coming into the group with this?”

Lena McCain: Yeah, so you know, when I start this group, I actually require them to have a diagnosis because I think it’s really important that at least like, kind of, what I’ll call the “founding members” have the diagnosis of EDS, and then once we get to like, 3 members, I actually leave it up to the group, to choose if they want to let people in who believe that they have it and are in the process of being diagnosed with it, or if they must have a diagnosis. The group that we currently have is really open, they’re not really interested in “gatekeeping,” as they like to call it, and so as long as there is an indication of kind of, the checkmarks of what might - you might have for EDS, so certain levels of pain. Especially with hypermobility, there is kind of a self-test they can take, and those type of pieces, and it being there for a while, they’re like, “yeah, come on in. In fact, we’ll give you resources on how to actually navigate the system and maybe get it quicker.” And what we’ve found is all of them actually do have EDS. So, turns out that way, awesome to have that support. So they show up, they either have it or they’re close to having that diagnosis. And then, really, I would say most of them have recently been diagnosed in the last year or two when they show up to this group. So what they’re really looking for, is, yeah people who get it. And they don’t really have that many friends, they might have one or two, or they might be home schooled. And they’re kind of just by themselves, wanting to meet more peers. And when they’re in the group, it is of astounding, because with my other groups, they’re a little more cautious about opening up. With this group, it’s never been that way. It doesn’t matter which teens, and especially the group that I have now. They’re just like so excited to be there. And we actually switched it, cause I used to have it was a biweekly group, and they requested that it be a weekly group, because —

Katie Kay May: That’s amazing.

Lena McCain they want to be with each other so much.

Katie Kay May: Which speaks to the space that you’re holding for them, as like they want to be there, they want to show up, their energy is bright in the room. I love that.

Lena McCain: Totally.

Katie Kay May: What would you say is the typical demographic in term of age, is it like all teen, does it skew older, is it younger?

Lena McCain: So it is… about, it is 14-ish, so high school, beginning of high school through to 20. Usually, in order to enter the group you have to be 14-18 but then I will let you stay up to 20, assuming the group is comfortable with it. We’ve never had a time where it wasn’t, we just have a one-on-one conversation once they turn 18 about how that looks, in a different - in their relationships, then of course let parent know if we have people who are under 17 in the group also associating with - yeah, with anyone over 18.

Katie Kay May: That makes sense, and then one of the things you said, when, on Facebook, when we were talking about having you back on the podcast, you said, I think you said the is your longest running ro your most well-attended group, tell me about like the success of the group and what you think contributes to that success.

Lena McCain: Yeah, so it is my longest running - and it was the second group I ever did opening my privacy practice because I have lived experience in it, and I was like, “literally there’s no one else doing it” - even on like the national sites, there wasn’t, at the time, anything for teens. And that was really problematic to me. And so I was like “okay, we’re just going to wing it - here we go.” And what I think makes it most successful is, there is a little bit of structure, of course, you know we have our opening so that everyone gets a chance to speak. But that makes it really the most successful is them each having the opportunity to share their lived experience, and not only have it be received, but in that group I specifically make sure we’re modeling, like how do we not just recieve it, but then we support it? Because often what happens when people share their story is not just that they share it, but often that people come with they sympathy resposne: “I’m so sorry, but at least you’re doing great, right?” Or, they take it and they’re likee, “wow, that’s really hard” it’s just a straight up empathy response, but then it kind of deadbolts. And then, the next one is like, “oh, well let me share my story, because I’m trying to connect with you” and it takes away the spotlight. And so in this group, what I think makes it really successful is that we spend a lot of time modeling and shaping, and how do we have a conversation that is supportive, so I hear your story, and i’m letting you have the spotlight, and while I relate to it, I’m not going to share my personal story, I’m actually going to share how that makes me feel.

Katie Kay May: Mmm.

Lena McCain: And this group, you know, is really, I think because there hasn’t been a space where they’ve really have had that before, they’re really open to that type of like, interruptions. You know, as a group facilitator, it’s one of the only groups where I’m very specific about interrupting and being like, “wait, pause, “let’s take a moment and take a deep breath.” Because the other part about having a disability or having chronic illness is that we - our body is always in the spotlight, but we live in a society that prioritizes the mind in the spotlight, and so in that time, what we’ve learned to do is completely disregard our bodies, so that we can fit into mainstream, and the is the one time a week that they don’t actually have to do that. And their body has so much to say, and their mind just isn’t used to stepping back and going, “oh, yeah, actually, that makes me feel a lot of things. That makes me feel really sad, and here’s where I know I feel that sadness, and I want to share that with you.”

Katie Kay May: That’s such a gift. I enjoy listening to you because I know what you’re doing for these teens and what you’re doing for your groups is really giving them the space to come back to themselves, and to figure out who they are and how they move through the world in a way that is meaningful to them and authentic.

Lena McCain: Totally.

Katie Kay May: So, I have to pause to say that I think your hat says “anxious af” —

Lena McCain: Yes!

Katie Kay May: — and I’m obsessed with it, I just wanted to acknowledge that before we move on.

Lena McCain: Appreciate it, I have a hoodie that says it, too. [laughter]

Katie Kay May : [laughter] It’s so relevant to my life, so I appreciate that. Um, I also wanted to ask you about — I know you’re so creative and you do a lot of creative activities. Within this group do you bring in that creativity? Is there something that stands out to you as a favorite moment, or really like, I don’t know, something that you can think of that you want to share?

Lena McCain: Yeah. Well, you know what, I don’t know if it’s just an EDS thing or what, but my experience with EDS’ers, is that we are very artistic, and probably because we can’t go out and about and do things, so we’ve gotta really entertain ourselves at home. And this group is no exception, they are all artists and crafters. And so, what sticks out to me as something that’s been super fun, and has been kind of, you know, the bonding point for them, is that they designed a logo, and then we put it on a hoodie and then I ordered hoodies for everyone and then they got a tie-dye package with it, then we tie-dyed it together online. And then while that happened, each of them crafted something specific to include in the package then sent it to me, so that I could hand deliver it to each of the group members.

Katie Kay May: Wow!

Lena McCain: Yeah, and it was all EDS-related, like some of them were bracelets with a little spoon charm on it, one of them, you know, painted something that was very specific to them, one of them literally was the one where like four groups shared their screen and were drawing the logo while everyone gave their feedback and were processing. Yeah, super freaking creative and also one of my favorite hoodies.

Katie Kay May: Yes, I love this, you’re brining these like - I think - people find a challenge in doing creative things and being online, and not just falling into like, using one - we’re all on Jamboard, or, you know, there - we have our regular ways of online being, but there - you’re making it 3D again. And that’s really awesome.

Lena McCain: Yeah, well cause the thing is, is like, even if - I’m staying virtual, that’s a big decision that my practice made this year - but, even in person, half of our group is always virtual, because in order to not just be inclusive, but create a sense of belonging in a practice with people who have disabilities, you have to be able to integrate both. And so anything that we’re able to do in-person, my motto is we’re able to do it online, it’s just my job, because I’m the one getting paid for it, to figure out how to do it. And so, it’s like, that’s always been a part of this group, and now that they’re all online, we just do the same thing. Like, if we were in-person, I would want to tie-dye hoodies with them for a group, for suer.

Katie Kay May: Yeah. That’s amazing, I love it. Is there anything that you find challenging about running this group, or any barriers that we can talk through, or things you’ve learned from that?

Lena McCain: Yeah, absolutely. I think that always happens with groups.

Katie Kay May: Of course.

Lena McCain: Yeah. Impossible for it not to happen, you know? I think, with this group in particular, because I have lived experience and I share the same identity with them, one of the challenges as a facilitator is that the question always comes down to, “well Lena, you have this and you were diagnosed at our age, how do you deal with it? What was it like for you?” And I’m a big believer in self-disclosure - healthy self-disclosure - especially with teenagers, because if you can’t do that, why would they talk to you?

Katie Kay May: Yeah.

Lena McCain: But, one of the barriers is like, I have, at this point, 14 years on them of developing a relationship with my disability, and like, I can see the light at the end the tunnel, and like, my relatilonship took a lot of befriending, And that’s not where a teen group is with disability, and I think for even probably for adults, that’s rabble not where a lot of them are either. But for me, I am, and so one of the barriers is like, we get a lot of dark, suicidal ideation really quick. Because it doesn’t get better. That phrase doesn’t work here. It gets worse. It gets way worse. And it gets way more painful, and more some of them - death isn’t the normal spectrum of like, “I’ll be older and befriend my disability.” For some of them, they have vascular EDS, and death might be a couple years down the road. Or they have really intense GI issues that have shown up with their EDS, and so it’s a couple of months down the road. And so this like suicidal ideation, or death in general is a huge barrier here, of like how do you support that, and know that you can’t say, “yeah it does get better,” and you don’t always have those success stories. And yet me with my lived experience, I have a heathy relationship with my disability. And it’s not as severe as a lot of my teens in the group. And those in and of themselves are barriers, because a lot of the times there’s anger there. And people are uncomfortable with anger, and it has to be directed somewhere. And like, I think one of the barriers is like how do you take on that anger and ththat et disappointment and that grief as a facilitator, and don’t take it personally?

Katie Kay May: Yeah. Which is a huge challenge, and, how do you do that? [laughter] Like, I know that I do what I do and I run my teen groups because it’s my experience as a teen. And so there’s nights that I can remember walking away holding the heaviness and sadness and shame, and that’s - that’s hard to shake. And what you’re talking about is even harder, in that facing your your mortality, right? So how are you, as a group leader, navigating that and not carrying that with you through the rest of your day?]

Lena McCain: Yeah, you know i used to sat anger was my favorite emotional and I really do think it is to some degree, but in the last year, with this group, grief has really taken a top space of being a new favorite emotion, and I think as a facilitator, as a clinician, you have to get comfortable with grief. Because grief is like a river, everyone experiences it, right? I like to call it the river of our soul, because there are times when it’s really peaceful, and time when it’s really rocky, and there’s a lot of turmoil and chaos happening, and there are time where it’s sticky and muddy, then there are times when it’s dried up. And I think that that just really encompasses, like especially for a clinician and a facilitator, like the process of what it’s like to hold those type elf emotions because, they’re not - to some extent, they’re not yours, and at the same time I think that they are, especially if you’ve come in with lived experience, because there are to a degree in which it’s yours, Maybe not to the same extent, but to a degree. And so it’s like, having to be okay with the ride, and to not take it personally, I mean, that’s hard. You have to sit there and think about the - the regrets or the remorse you have in that moment, and you have to really acknowledge the fears that are coming up as a clinician around how you’re holding it or not holding it, or even for them. I mean, it’s scary to sit there and be like, “wow. You know, I really care for this teen, and we have this really amazing therapeutic relationship, and at some point they won’t be there.”

Katie Kay May: Right.

Lena McCain: Right, like most people don’t talk about that, as a clinician, and so it’s like, those are big fears, but then you have to go through the appreciation side of that. What does that mean to have someone on the other side share that vulnerability with you, share their regrets, their fears, and then the hopes that you have for them? And then I think if you can go through that, you can also model that and then shape into the conversation, so that the group is also going through that without it just being like, “okay, it’s here, and we’re going to go through it like x, y, z, step one, step two,” it’s like, “well no, I’m working on that on a personal level, so I’m going to model that also, in the questions that I ask or the statements that I’m asking.” And that once again, shows how do you have that supportive conversation? Because they worry, and most people want to say, “I’m sorry, I don’t want that for you.” But that’s just not the reality. And also, it just sucks to feel that way, you know? Even as a —

Katie Kay May: That was like the most perfect answer that I could expect. I loved your river metaphor. And everything you’re saying, I keep hearing you come back to the humanness of it, it’s like you know e’re not just following steps 1, 2, 3, but w’ere tapping in to that authentic human level below that, and that’s really important, not just saying like, saying the thing we’re supposed to say when somebody says something sad, we’re experiencing and we’re sharing and connecting. I’m wondering, if as a part of this, you do tap into any resources, or if there are any tools or anything like that that you use to bring in any themes and content, or if it really is just pressing stuff they’re coming in with ?

Lena McCain: Yeah, you know, it is very process-based about what they’re coming in with. I always have a question or two in my pocket and I think, if I had to pinpoint where those questions come from, emotion-wise, it comes from the book The Language of Emotion. With the exception of how she talks about love, and how she notes anger as a secondary emotion, I love everything about that book. In fact, I think she calls grief “the deep river of the soul,” and you know, I think it’s an important way - she has these like little cards, these emotion cards that have taglines on them, that I think are just really important. And I often reflect back to the group, like, anger, “anger is the honor society of a person.” So it talks about boundaries, and disloyalty/loyalty, and it only comes up if those two things aren’t going well. And I think that that’s really helpful for this type of group, when we’re talking so intensely about emotions, and how we self-discloses like we share stories. But then the other thing that comes up to mind, is that I spend a lot of time on disability social media, just a lo too time, and not just like, “oh there are the tools to read,” but reading the captions of people with lived experiences, or finding articles - even my operations manager, they have Cerebral Palsy, so they - we spend a lot of time talking about disability, and they’ve been with me through college, and so like, they have a really unique understanding of my disability. And so we have a lot of conversations of like, what kind of questions did we wish people would ask us, but never got asked? And some of those questions look like, “how does your disability stop genuine relationships from happening?“ and “is it difficult to have self-compassion when you have your disability?” “What type of stereotypes do people have about you and your disability that they won’t even say to your face?” “How have people treated you differently since they found out?” Those types of questions, just in my back pocket, because they always fit in somewhere, and so I’m always like, “yeah, go and read from lived experiences, talk to people who are not in your group who have lived experience and make sure you just have a plethora of questions around it.” You don’t even have to have an answer yourself, because most of the time I don’t, I’m like, seems like an interesting question that I wish someone would have asked me, but I’ve never processed, and so that feels rich to ask the group, and so maybe I’ll have an answer by the end of the group!

Katie Kay May: It’s such a smart tip, I think that’s very generalizable. It’s like, go to the place where people are talking about this, and read what they’re saying, and you know, really learn what needs to be talked about. And so I love that, as a tip in general, and I love how you’ve gotten these really deep, rich questions from doing that kind of work.

Lena McCain: Totally.

Katie Kay May:: If you were to pass on your wisdom to a new therapist who wanted to run this kind of group, what would you say are their first steps of getting started?

Lena McCain: I think the first step in getting started is with any - it’s kind of just with any marginalized identity or marginalized topic, one is recognize your own prejudices that you hold with it, even if you have lived experience, because we wall have them and it’s so important to look at them, because you know, we say that we do, like, as therapists we’re supposed to always be looking at it. But saying it and actually doing it when you’re about to start a group is a really important piece, because this is probably one of the only spaces for 45 minutes an hour, two hours, that they get to come and hopefully not experience it to the degree that other people experience it. So if they’re coming in, and you’re coming in with this “light at the end of the tunnel” approach, but that’s not where that group is at, and they’re not interested in getting to that point, that - that’s a - an opinion, a belief that you’re holding that can cause a lot of harm for them. And so having to check that kind of bias, that prejudice, I think is the very first step in working with any type of marginalized group, and especially chronic illness, because there’s this weird gray area where people claim that they have a disability or they claim that they have a chronic illness. and yet, there - like - there’s not the evidence to support it in the way it has other people, and it doesn’t mean that it’s not true, but at the same time, it can be really harmful, which is why like, when i think bout our group - an ego back to like, I give them the choice, because sometimes - like with EDS, right, I’ll use it as an example. I you have vascular EDS, but then you have someone like me who comes in who has hEDS - hypermobile EDS - we have two very different experiences, and if I”m not diagnosed with that, that could be so harmful to the person who’s saying, “yeah I might only have a couple of years left.” And at any point something could rupture. Versus me, who’s like, “yeah, mine isn’t life-threatening, but I can really harm my shoulder, or I might not be able to walk again.” Two different experiences, and I have prejudices against that, that I have to keep in check, all the time.

Katie Kay May: Makes total sense, and I guess that’s the resounding message that you shared last time, is like, “do your own work.”

Lena McCain: Mmmhmm. Always.

Katie Kay May: Make sure you’re checking your biases before you come into the room, and it’s so important to keep saying, and being reminded of and remind each other of as clinicians, because it can do a lot of harm if we’re not doing our own work before we show up in the room.

Lena McCain: Yeah, and that also like, when we do that, what we’re also allowing, especially in things like chronic illness or disability, what we’re allowing, is for our body to have that stage, right, because - I think when, you know, in my last interview when we were talking about sex education, I feel like in a lot of ways that’s very mind-heavy, even though it involves the body. It’s mind-heavy in educating. But with chronic illness and disability, like, especially in the scene of talk therapy group, there isn’t as much psycho ed happening, and so it is really body-based because they are also body-based. And so, checking yourself and just making sure you’re aware of those pieces also means that you’re going to allow your body to take up more room than your mind for once. And especially in America, that’s a big deal, because we don’t do that very often.

Katie Kay May: I love that message. So… tell people where they can find you and all of your amazingness, across the social medias and your website. What do you want to share with us?

Lena McCain: Yeah, absolutely, so interfaithbridge.com is our website. If you want to find out about our EDS group, it’s interfaithbridge.com/EDS, pretty simple, and then social media is just interfaithbridge across the board. Come hang out with me.

Katie Kay May: We’ll find you. Not in a creepy way, we’ll find you in a celebratory way.

Lena McCain: Deal. [laughter]

Katie Kay May: Hey groupies, thanks for listening. For more resources on how you can market, fill, and run your group in private practice, check me out at becomeagroupguru.com

[outro music]

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I hope you all enjoyed listening to this podcast interview as much as I did recording it.

Until next time.

About Our Author | Lena McCain MA, LPC. 0017723

Lena McCain is our Founder here at Interfaith Bridge Counseling, where she continues her support as our Clinical Director. She also holds a Master of Arts degree in Clinical Mental Health: Mindfulness-Based Transpersonal Counseling Psychology from Naropa University.

Lena’s drive and passions lie in the realm of community building and youth collaboration, which she has spent the last 12 years studying with an emphasis on one’s exploration of personal growth, community healing, and multicultural values. Lena’s expertise in these areas and the therapeutic field acts as a reminder to our community, teens, and young adults that they are not alone in their experience of life.