Ep 13: Navigating Life with Chronic Illness: Embracing Boundaries and Shifting Identities w/ Karen Lill
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This is a rough transcript created with Artificial Intelligence technology. Any misspellings and sentence errors are a result of imperfect Al.
In this episode, we'll be discussing what it's like to see a drastic shift in your identity due to the life-changing news, that you have a chronic illness as a former athlete, Karen Lil knows a thing or two about what this means aside from working in private practice. Karen is a board member for the Georgia art therapy association, the vice president of the LGBTQ therapist resource network here in Atlanta.
And she regularly volunteers as a psycho Mansour for a nonprofit called take this which supports the intersecting populations of gamers and mental health needs. Karen works with teens and adults who are gender, sexuality, and relationship structure, minorities with special training and working with gender identity, chronic illness, creative and artists types, relational trauma, and the geek and nerd.
She also is the clinical team lead of modern path, a group practice in Atlanta, where she supports a wonderful team of queer clinicians, many who live with chronic illnesses themselves.
Karen, welcome. Thank you. It's really, really great to be here, destiny. I appreciate
it. Yeah, I'm looking forward to this chat.
So maybe you could start with telling us a little bit about who you are. Um, we talked a little bit about that in the bio, but you know, maybe we can start with what draws you to the chronic illness population.
Yeah, that's a great question. Um, I actually didn't advertise until somewhat recently that I work with chronic illness at all.
Um, it just kind of kept landing in my lap. Um, when you work with the queer community, which is full of people, who've experienced trauma experienced. Lack of accessible medical care or lack of family support. You have a lot of people who don't have as many resources and are more likely to have intersections that create, um, exacerbated health conditions.
Um, and so it wasn't really a, I want to work with this population as much as it was, this population just keeps finding me and being able to use my own experiences to support wherever they are in that experience of having a chronic illness and just really being able to relate to what that's like. Yeah,
absolutely.
And I know one of the things that we want to get into today is identity and what it's like to shift identities. Can you maybe tell us a little bit about what that conversation or what that topic started to look like for you? When did you start to realize that identity shift is a big part of this work around with
chronic illness?
I think it was mainly my own personal experience and then seeing what I experienced in my clients. Um, so for me, I was an athlete in high school. I played intermural sports in college. Um, as well as after college, I worked out a lot. Um, I actually have run half marathons, I've run a full marathon. Um, and actually the full marathon that I ran in 2013 is what kind of launched my chronic illness.
And it developed slowly like they do. Um, but I went from somebody who literally did 26 miles of like running, walking, um, to doing a lot of exercise classes, working out quite a bit and years down the road to a couple of years ago. Um, It got to the point where I was doing these two hour dance classes and couldn't handle two hours anymore, which is the kind of a lot.
So switching down to only like an hour class to moving to yoga, and I will say this to anyone who's ever been told yoga is a great solution to chronic illness. A lot of yoga is really hard on the body. And so I went into the mindset of like, this is so easy. I'm going to have a great time. I did not have a great time.
Um, as I learned how hard it is to balance yourself or put so much weight onto your joints, like your wrists, your knees, these areas that often hurt us when you're trying to do something, that's can have elements of like soothing meditation, but in an exercise class, it's a lot more focused on stretching and strength.
So when I feel like I failed out a yoga class, um, I ended up. In the pool at water aerobics, and as a person in my early thirties, it was very strange moving from these two hour workout classes to in the pool with folks who are much older than me. Um, and especially I look physically able, um, I look like somebody who has all of my physical abilities and capacity.
And so it was really hard going into these experiences, feeling like my body is much older than it is, and much more broken down because of that experience of that identity shift from athlete to water aerobics was a very difficult for me. Yeah. I'm
glad you brought up the point about yoga because I know it does work for a lot of people I've even.
Therapists on this podcast, say like, that's what helps them every morning get through their days with chronic illness. And it has never worked for me either. So I feel you there, it's very stressful on my joints and I'm sure there are, yeah, there are gentle. Um, I know that there are gentle yoga is out there, but, uh, maybe they just haven't found the right one.
Yeah. I did some yoga therapy for a bit and it was really wonderful from like having somebody assist me in stretching my body. Um, but that's very different than what like LA fitness or lifetime fitness is doing in their yoga classes. That
makes sense. Yeah. Yeah. So can you speak a little bit to what it was like to, you know, that journey?
How many years would you say it was from when you ran that marathon to like water aerobics is now that's my, my go-to for
exercise. Yeah. So I ran in 2013, fall of 2013. Um, and I developed like many runners do, um, issues with my feet, um, which on a whole different thread really started off the experience of medical trauma and medical advocacy and all the things we have to do, um, in our life as a medical, you know, as a patient, a expert patient.
Um, so while being treated for different conditions that flared up over time, I would say that in 2013 I was running. And then, um, in 2019, I believe is when I first started doing water aerobics. So probably 2018 was when I started to have more of that decline of my abilities. Um, As a lot of people here, I'm sure who are listening know as athletes, we tend to push ourselves really hard.
Um, we are taught from a very young age. Whenever we start that you push through the pain and if you're the best on your team for blank, part of, of the sport, then you don't get to take a break. You push through any injury and you just keep going. So a lot of time you're going into these workout classes.
The doctors are telling you, you need to do this. This is what helps. You need to lose weight. You need to be active. You know, a body in motion stays in motion, but then you're pushing yourself past the point of what's healthy and what you can bounce back from and recover. And find yourself more severely injured or exacerbating an injury that leads to having to put yourself into more gentle experiences, like getting into the water and feeling what it's like to feel weightless and feeling, um, not having pressure on all your joints and on your feet and the pain that comes from, you know, exercising in different ways.
I mean, at that point in my life, going from these one hour classes, I remember a physical therapist telling me, like, you got to hop on the bike and bike for a bit until you feel pain. And I clocked it. And one day it was like six minutes before my knees were screaming at me. It's really hard to have a gym membership and go to the gym when you're like, I can work out for approximately six minutes and then I'm done for the day.
So it's just, it's so different and you grieve a lot. Um, Especially if you've been an athlete for a long time, and that's what you are well known for. And that's where a lot of your skill development was to have that taken away from you. It's kind of like now, what do I do and how do I stay healthy? Or, you know, when I can't do the things I used to do.
Yeah. That makes a lot of
sense. Um, that process of just losing everything that you had known, I'm sure. Could you speak a little bit more to
what that experience is like? Yeah. Um, and in my own experience, how that has looked is explaining to friends who are in the same kind of age bracket as me. So late twenties, early thirties, kind of age range and them wanting to do things like let's go to stone mountain, let's go hiking for, um, do you want to come play soccer with us?
And I used to play soccer and having to tell them. I don't know if I can, you know, when I I've talked to some friends about going hiking and I'm very grateful, like my support system is like super understanding and super wonderful. But when you think about what goes into a group hype, right? Everybody drives wherever you are, you get all your stuff together and you're gathered with all your extra water and food and snacks and all that stuff.
Um, and usually you start in one place and you go and you either turn and come back or you do a loop. And so with somebody with like limited mobility, I don't know if my body's gonna, you know, die out on me five minutes in or 45 minutes in. And what do I do if I'm in the middle of a loop and I can't get back, or it's so quick that I can't even go any further and.
Again, love my friends who are like, we'll do that with you. And I was like, do you really want to go hiking and end up like sitting in the car, eating snacks out of a cooler. Um, and I've had a good friend of mine say like, yes, I also want to do that. Um, but it hits you in ways you maybe don't expect it to, um, and in these little interactions, like, do you want to go bowling?
And it's like, yes, can my wrists handle bowling? I don't know. You know? Um, and so even if you're not, um, like I think what people don't always understand is even though I can walk, I can stand, I can run, I can do all of these things. I can't do most of them for an extended period of time. And so they look at me kind of like, well, you should be able to, cause you can do this versus.
If I had a say, even like more limitations, people might be a little bit more respectful to that. Or if I had like visit visible signs of disability, people don't ask as many questions. And I say that, not saying, I want to have those things. Cause that's a very hard life to have, and I don't don't want it to come off like that at all.
But more of just that people respond very differently with how you look and what they expect you to be able to do, because you don't have anything broken visibly or you don't use mobility aids.
Yeah, absolutely. No, it makes perfect sense. Um, I think, I think even when we do have visible issues, people still expect more from us than what we even can do.
So it makes even more sense that without those visible, um, detectors that you would be, you would be expected to do so much more. Yeah. And it is it's in those little tiny things like. No one comes up to you and says like, well, I think some people do have this experience. So let me not say that. But, um, you know, most people won't like come up and just confront you and say like, you should be able to do more than you're doing, but it is it's in those little tiny things.
And even when you do have the support of, if your friends, like you said, it's like, yeah, like, do you really want to like end the hike early again, five minutes in. And so, yeah, I can understand that and relate to that. And I'm wondering how you have navigated that with maybe with your supportive friends, but also with people who haven't been as supportive.
Yeah. Um, I'm very fortunate that my husband and I are both as I call us indoor cats. Um, we're not really like outdoor people. We love gaming. We love arts and crafts and creativity, which is a whole different identity that I do want to share about because that does get impacted as well. Um, But what has developed in my support group is actually a lot of other people with chronic illnesses.
And some of them who've either started to experience their chronic illness later than I did, or it kind of morphed from that. I have these pains from pushing myself too much. And for overdoing it previously into something more severe and more debilitating is I ended up being kind of this like chronic illness, elder who like slow yourself down.
You need to pace yourself, understand that a year ago you could do this whole move by yourself and carry your fridge on your back. But today we're not doing that. And so. What's on, I guess, fortunately and unfortunately developed is a group of people who do understand because their partner or themselves are in a similar boat and they go off and do their things that are really physically active and we hang out and make food and they come over afterwards.
So it's kind of a, win-win in a lot of ways, but I, I have had to distance myself or have relationships very much, uh, end. Um, so some change in shift and some have ended because people really didn't understand that. I, I cannot push myself the way that you can and I'm not willing to, I'm not willing to wipe myself out for a week just because you physically can and just will be tired later.
Versus I now need to add another doctor's appointment this week because I did this thing that was too much for my body to heal.
Yeah, and I definitely want to get into some of your other identities, um, that you've mentioned. I'm curious how you, um,
navigated the,
having lost your friendships. Um, especially maybe the ones around sports and athletics, since that was such a big part of your identity.
Um, what did you find that you were finding new groups of friends simultaneously while you were losing friends? Or was it this kind of clear shift of like I've lost X amount of people and then you kind of searched for new identities? Yeah. Can you speak to that a little bit?
Yeah, I'd be happy to, um, and a big common theme that's throughout the entire chronic illness life is grief. You are grieving all the time and it's not a. For a lot of people, it's not a single wave of grief. Like, oh, I lost this and now I'm going to experience it and process it and move through it. It is realizations as things come up. Um, it's thinking about the future and wondering what that's gonna look like.
Um, a lot of my relationships with other people that have been centered around, um, athletic events, fortunately some of those friends have just been very understanding and take that as almost just a separate thing in their life that they kind of move away from me. Um, and they're very mindful of the fact that I really don't want to be invited to do that thing.
So please don't ask me to like run with you, please don't invite me to play soccer. Um, whereas other people, most of them not even really related to sports, but a continuous pattern of these kinds of micro-transactions of. Well, I don't know why you can't do that. I don't know why you can't walk around this museum or this zoo aquarium mall, et cetera.
Um, we're going to the city and we're going to be walking all day it's okay. Do you remember that? I have this thing. Do you, do you believe it's real? Can you respect the boundary that I have? And so you just kind of drift away. I think from people who really don't get it, and sometimes it can be very clear and firm, and then other times it happens over time and you like grieve this weird relationship ending thing that trickles off.
And then eventually you come to a point where like, okay, I'm no longer inviting you to things I'm no longer updating you on my life. Um, don't feel like we're really connected anymore.
Yeah. It's helpful to hear the different ways in which that can happen. Um, and I'm also hearing that you, you did have clear boundaries, you figured out and knew what you needed and wanted such as don't invite me to these places.
Um, I'm sure that took some time to get there too, though.
Yeah, it does. Yeah, because you want to, you want to be, I hate that mean, you want to say this word, but you want to be normal. So you want to push herself and fit in. And the more you have the FOMO of missing out on, you know, inside jokes and times with friends and this thing, you know, in your head that you've invented, that will happen when they all become best friends from hiking, it doesn't happen.
But when you think that it will, um, it can feel like you feel left out because you have this limitation. And then going back to that, like hiking example of y'all really want to stop you, then sometimes limit the people around you. As much as my husband reminds me that like, he has no interest in hiking and walking, moving around all that much.
You still wonder if that person's missing out and it's feels like it's your fault that they're missing out. Even if they're very clear with you, even if they're disappointed, you know, that they're still very supportive and they are making a choice to stay with you then to go out and do the thing that you can't do.
Yeah. Yeah. There's a lot to navigate there. How did you end up moving into new communities and were you always a part of the gaming community? Um, or is that something that developed after you during this shift?
Um, my relationship to gaming, I would say with. From, from a young age, in a sense, um, growing up with being really into like Gameboys and handheld, you know, um, gaming systems and really not owning a good console of, um, for, for many years.
Um, and it was, I guess it was about the time around when I met my husband, that I got really into a certain like gaming, um, series and franchise that also led me to being really involved in cosplaying. And so shifting into gaming and cosplaying, which plays off of my art background and my experience with enjoying costuming and everything as a kid and my is very talented, seamstress.
And so her making costumes and learning from her. So those things just kind of part of my interest the whole time. But I have found that even those identities are impacted with chronic illness. And I'm very fortunate that my experiences have not been as intense as some other people that I've talked with.
Um, but the relationship to yourself as an artist and a game or a cause player can be very limited when it comes to the physical ability of cutting materials out. Um, even those like small movements in your fingers and in your thumb, when it comes to playing a game, holding a controller in your hand, uh, dropping that controller and how that feels and kind of feels frustrating and embarrassing.
Um, I've had times where my fingers have like locked up in the middle of like creating something. And if you're also nerd divergent and procrastinate, then like last minute you're getting hit with, okay, my, my hands can't keep cutting or sewing or I'm limited in these ways. Um, so it brings in another level of like chronic experience of neurodivergence, along with the physical experience of, I physically can't do that and I have to figure out how to modify it.
And that comes with a lot of privilege. If you have access to somebody who's willing to help, or if you have the money and the time to buy tools that make it easier, very different than if you're trying to make things with a small budget or you don't have a lot of help and you're trying to make everything yourself.
So those identities definitely get impacted by the chronic illness experiences, physically and mentally. Um, my relationship to board games has shifted greatly. And I think a lot of people think of war games as like not a very physically active sport. It's not. Um, but my mental capacity for directions and roles has shifted and change where I could hold and store a lot of information.
I now have levels of brain fog. I have, um, medication side effects that affect the way that I think and the way that I process information. So before I could handle, um, a lot of rules and a lot of nuances to a game, and now I have essentially like a limitation. If the game instructions are not a physical book, I can probably do it when it becomes like so thick that they had to use a binding on it.
Like I'm going to have to step out and, uh, monitor this or play on someone's team and, um, or make food for the group. And some of my friends I've referenced earlier have been really understanding when I say. I'm having a good time hanging out with y'all, but you should play the game. Um, a lot of people are like, oh no, we'll do what you want to do.
Like, what, what I want to do is watch the game and like commentate and, you know, tell jokes and make case. So, um, you know, it's finding people who do respect that and say, okay, you say, you're having a good time. Then that's what matters. You don't have to be actively playing the thing just to have a good time.
It sounds like being intentional with your language is really important. And that's what I keep hearing throughout the theme of every, as a theme throughout what you're saying is, um, at every corner you basically had to learn how to communicate probably for yourself and for the people around you. And not only can you learn how to communicate clearly, but then also.
Manage a little bit of other people saying that what you said, isn't again, you know, well, we want to do what you want to do. And so you then have to manage like, no, no, no. What I want to do is this. And let's all, let's all do this together in the ways that we can. So lots of navigating in communication
and that came from very emotional experiences.
Um, there's uh, the board game, my husband is obsessed with like possibly was married to, before we got married, um, is a game that does have a lot of rules and complications. And he loves that. Um, I don't, and we've had some really emotional experiences as I've grieved over the past, you know, I guess now it's been.
The math, like nine years since I started developing chronic health issues, but probably the last, like three or four where it's gotten more severe and more mentally impacting where we've had these conversations of like what I can handle and what I can't, and it can change even by the day, that's the really fun part of chronic illnesses.
You're gonna have a day where you're like, I'm good. I can play this game or I can do this hike. And then other days it's like, just kidding. No, I can't. And you have to really learn to pace yourself and adjust. And like you said, communicate what you need and what you want very honestly, and openly, and not expect people to read your mind because that's just not fair to them, but also really be direct.
That that is how I feel. And if I'm not having a good time, I'll let you know. But right now keep playing because it's fun to watch.
Yeah. Do you have any advice for people who need. Um, are trying to communicate clearly, but yeah, they kind of get maybe hung up on what other, how other people are responding to them.
That is a really, really good question. One of the big things that you have to do is trust the people you're talking with about what you're going to share with them. If you trust them to believe you and you trust that they will respect what you're saying. Um, it is a lot easier if you are having concerns that they won't understand, or they will make it about themselves.
It may be time to also reevaluate that relationship. Is that somebody that I really want in my corner, if they can't understand what I'm asking them to do. So it is really hard. Um, society.
Society has created this, you know, ablest life for all of us. And so even somebody that has a chronic illness or disability has a underlying foundation of ableism. So you're already kind of gaslighting yourself on what you're experiencing and you're grieving. And you're thinking back to, well, years ago, I could have done this and I would have been the best at this game.
Um, so you're having all these internal experiences while talking to people who maybe have no idea what it feels like, um, or even more helpful. They'll tell you about the time that they were in pain for like a week. And you're like, ah, yes. Now you see how that's the same as nine years. Thank you. Um, so then you have to really give people the benefit of the doubt that they will honor and respect what you're asking for and then hold those boundaries.
And again, if they, if they can't and they don't reevaluate that relationship and that boundary, you can change to all right, we don't play games with these people who were, if you want to play games with them, I think I'm going to make my own plans to hang out with other friends, doing a different thing that doesn't involve whatever, um, tough area or, or, you know, maybe emotionally tough, sensitive area for yourself, so that you're putting yourself in situations that are emotionally healthy and respectful to your boundaries.
But it's very hard, very hard. Yeah. Lots of
constantly adapting and adapting means looking at the things you've lost. So that grief comes up over and over again, even when you feel like you've worked through it already, um, and then adjusting to something new, which can be scary and exciting. Um, but both of those things usually happen together.
So. It's figuring out how to have enough of the exciting stuff so that you can navigate the challenging stuff as well. So it can kind of hold you and support you. There
it's been my experience anyway. Yeah, definitely.
Can you tell me a little bit in your bio? We, I use the term psycho Mansour. Can you tell me what that is and what that
looks like?
Yeah. Um, that's a fun question. So psycho Mansour comes from video game terminology of being a healer. And so take this, which is a nonprofit, um, centered around gamers and mental health was developed out of, um, loss in that community by suicide and realizing how isolated and, um, Alone people can feel. And so in the gaming community and in certain types of games, if you get something like a, a potion or a weapon, it will be like, take this, right.
Um, the road is hard ahead to take this resource. And so they've created their entire structuring based on gaming term terminology, including psychosis, psychology, counseling, Mansour healing. So being like mental healers, which I think is really cool. Um, and that also is a community, you know, very full of people with chronic illness, because as you lose the ability to do things, you start to look at what can I do from home and what can I do with maybe limited, um, physical ability and gaming is a big part of that, but that also then is part of the issue that take this as trying to support and work through, which is.
Isolating in being in your home and in your space and some gamers, and especially with things like discord have become very social events and social networks of people who never met in person, but have these wonderfully rich, um, lives together online. But also it can turn into being very isolated from other people.
If that game isn't one, that's more actively social or you're on a different time zone from your friends that you play with and it can really create that alone feeling. Um, and then with depression, you know, or other mental health conditions or symptoms being a part of that there's resources that are needed to help people understand that there's resources out there, like take this.
So, yeah.
And so you volunteer with them, is that right as a therapist or like, what is that identity for you as the volunteer in that.
Yeah, take this as just, I could probably talk about them for hours. Really cool. Um, cool group. One of their big, besides providing all this advocacy and mental health resources on the website is that they create these AFK rooms, which stands for away from keyboard.
Um, so it's playing off again, gaming, uh, terminology. And so at these really large gaming cons like the entire like PAX convention franchise, but also Momo con here in Atlanta, we have these spaces that are quiet and kind of cool temperature wise. We have water, we have coloring books and, uh, art materials and things.
So when somebody needs to step away from the convention and get into a space that decreases a sensory experience, um, allows them a chance to breathe or sit and collect themselves. They have a place they can go, and then it is staffed by volunteers from any level. Someone who has no clinical experience, who's just a, another gamer or somebody who really enjoys helping.
Um, so more of like that peer level, all the way up to the, um, the folks who run each conventions, AFK room that are going to be licensed clinicians. And then the staff from take this, which are also licensed clinicians, many that have, um, you know, PhDs and societies and doctorates. And so when I've volunteered in the past, and I've been doing that since, um, grad school, um, I would just normally come in and be there for a shift and you just kind of hang out.
And when somebody comes in, check in on them, see how they're doing. Um, it's not actually therapy. That boundary of what do you need? Can I help give you a resource? Does the website that we have have a resource.
Um, during that moment to help them just feel more in a balanced, like level state for themselves, um, in the pandemic that has actually shifted to online versions through discord. So I have been able to do that over the past few years, participate in these online spaces where we're providing the same thing, checking in how they're doing with the convention, not as much sensory overload, cause people are at home, but still the feelings and emotions that can come up with, um, going to panels or talking to friends or being excited about something than just acquainted about something.
So it's a lot about reducing that isolation and providing support and resources available.
That makes a lot of sense. Yeah. Thank you for sharing all of that very clearly. Um, do you have any advice for people
who, so as
someone who is it, you, you mentioned, uh, gamers that can sometimes the depression that can come along with that loneliness and that isolation, it can be, uh, it can be very filled with community.
And then also very isolating aside from the take this spaces. Um, if you were working with a client, you know, an individual therapy, and this was something that they were consistently dealing with, like feeling like there there's people there online, but then they feel this utter sense of aloneness. What is just, you know, some blanket advice that you might give in that
scenario?
Yeah. Um, I often talk with my clients about finding a balance between games that are online multiplayer, where there's a social component to. With playing games with people they know in person, if they do have access to friends that are, um, nearby locally, um, or even moving out of the game space and talking to folks on video or chatting with them to really kind of stay engaged with those, with those friends.
Um, it's been wonderful to hear clients share about like meeting their online friends in person and having these like wonderful connections, which is great. Um, but sometimes it's moving past just the game. Like what's built into the game components that are social and moving out into, do you have friends where you can like check in on your mental health?
So your conversation isn't just about the game and what you're doing in there, but it's about maybe what you're experiencing. So when the game is turned off, And you've moved away from that, that one central kind of, you know, virtual space. Do you have folks that you can email or text or FaceTime video chat with who you can talk about how hard school is right now, or your job or your relationships, and kind of move away from some of that isolation.
Challenging is sometimes the people who get you best and understand you and accept you the most are the ones who are online. So it can be really hard to have somebody experiencing that because you don't want to encourage them to move away from accepting people and you want them to continue their identity exploration, but also recognizing.
There are ways to just kind of increase the level of involvement and communication. A lot of times, um, older generations or folks who are really not involved in technology and video gaming, don't really understand that there are so many social components, but it's finding that balance of what is the person telling me they're struggling with and how can I use gaming to support that versus looking at gaming as the problem.
This is what's wrong. Yeah. Yep. That makes perfect sense.
Yeah. How would somebody who, um, was interested in learning more about take this? Uh, not just as the, I think I heard you say that it's not just that the convention, there's also an online space for takers. Is that right? Okay. Um, how would they get involved and, and, yeah.
Get the resources that take this off.
Definitely I'm heading over to the website. Um, we have some really great, um, resource tools that we use at the events. Like we have a find a therapist flow chart that walks you through how to research therapists on psychology today. And again, everything's like nice and gamified, which is fun.
Um, and it just depends kind of if you're a clinician wanting to participate or if you're somebody wanting those resources. And so there is an active take this discord that is used and has spaces that are con specific where volunteers interacting, but there are spaces on the take, this discord that are available more frequently.
It sounds like it was built by therapists. I've never heard of a stroke, uh, support, like, as you were talking, I was like, wow, they've put a lot into this.
And you know, whether gaming or any other industry, um, I haven't heard of like a, a structure like that, that just really does sound super supportive. So it sounds like they have done a really good job there.
They, they really have, and, um, I, anytime my clients are going to be attending a con, if, if I know take this as involved like Momo con or the PAX conventions, I always encourage them to check out the AFK room.
Um, it's a really cool thing. I really enjoyed working with them. Um, it's like, yeah, like you said, there, there isn't a lot of stuff out there like that. That's great.
So maybe we can talk a little bit then about,
um, it
sounds like, it sounds like you still actually do a lot, despite your. Your constant, um, navigating of like how much can I do?
And I think that that's also really common for those of us with chronic illness. I know I get told the same thing quite a lot. Um, but I also know for me that I love everything that I do. So I'm gonna let you speak to this, but I, I wanted to share too that, um, example podcasting and, um, social media and creating new groups and coaching and all of the things that I've got going on. I genuinely love every aspect of those things. And so that's what keeps me going. And what makes me also not feel like I'm not just like on the rat race kind of hamster wheel, I'm genuinely going after the things that are important to me and finding ways to navigate them, despite maybe not being able to be as active in other ways that I'd like, so that's a little bit about me.
I'm curious how you navigate all those things that you have going on and kind of what, what keeps you going?
Yeah. I am laughing a bit over here because of anybody who knows me saying, you know, being, sorry, hearing how Karen you do kind of a lot would laugh because I do, um, I have to work a lot on like saying no and setting boundaries and.
I think in the past, um, more of that ableism would have kicked in and I would have been, yes, I can do that. No problem. This is how I'll do it and get really kind of really involved and overextend myself. And I've had to really learn how to set boundaries, but I'm very fortunate to have great role models around me, whether it be close friends, um, people at work, my colleagues there, um, my boss there, my, my parents, people who taught me better ways of saying no, um, since no is a complete sentence and it is a boundary, but it's really hard when you, you know, how much needs to get done to create positive change and to, you know, help the different parts of the counseling and our therapy per profession, you know, change and make forward motion and looking around and being like, well, nobody else is doing it.
So I'll say yes, um, In the more recent years, I have been more vocal with the boards that I'm on or the groups that I work with a lot and let them know upfront, Hey, I have these chronic symptoms that present themselves. And there's been times where I've had to say, I, I will try to be there, but I can't be like the point person, because if the day of I am recovering from, you know, really bad physical symptoms in some part of my body, I can't make it.
I can't be the person that's like in charge. So I feel like sometimes it's my body. That actually is like saying no for me. Um, but being very upfront and clear of this is the boundary that I have. And if you are going to be upset by the fact that I can't be there. Then we have a problem. So we're going to need to reevaluate whether I'm involved with this, but also just setting those expectations really clear at the beginning of I will do my best.
I will try to be there, but these are the reasons why I may not be able to be consistently there. And that's really helped me not feel as stressed about something, because I'm like, if, if I can't, I can't and that's okay. We should generally have that ability no matter what, but our society has definitely pushed that you should be able to take on 45,000 things.
Do them all perfectly do them all in a way that super impressive and you know, really focusing on perfection. And so we have to create those moments of like, Hey, I have these limitations and I really need you to understand them and respect them. If you don't, I won't be here anymore. I won't volunteer where I can't be part of this.
And I'm as scary as that can be. Cause I know it's hard to set the boundaries. Most people have been very respectful of it and they've understood why I have those limitations or what I might need in the moment too. I might need to go home early or I might need to be a big part of the pre-planning that I can do via email and video calls and stuff versus physically being there and setting something up or being able to give a higher percentage of guarantee that I will definitely be able to function that day because it just, I don't know.
I might not be able to, so yeah. Yeah. Um,
it sounds like you've had to, again, Constantly think about what, what you're losing and what you're okay with Zane and what that looks like for you, if you do lose
it. Yeah, I think the higher, um, I guess the more intense your experiences with being like the gifted child or the very like intelligent or talented person, whether it be in arts, academics, sports, any of those things that are really nurtured in childhood and teenage years, the harder it is to kind of accept and create boundaries that are necessary about your energy.
And so then you end up again frequently overdoing it and saying no to things and being able to put those boundaries up of, you know, this is my last year doing this, or, um, I can do this for one more, but, and then I'm done. You know, the magical part is like the world doesn't end when you do that. And you may feel like it's going to, and the anxiety is hard and it's hard to feel like you're letting someone down, but usually once you've done it, you realize, oh, somebody else stepped in and is helping or it's okay.
That I'm not the person keeping this afloat because it shouldn't just be on me to keep this afloat. And if I have to step away, then I have to step away and what will happen? It's going to happen. That's hard but important to do.
Yeah, it does. Especially. I think for a lot of us, we actually rely on being the one who can take care of it and handle it.
So there's even lost there, even though what's best for us as usually being able to helpfully say, someone else can handle it. I don't have to take it all. But there is a little bit of grief in that as
well. That's why I prefer, or I find comfort and working with other people who have chronic illness. So when we bring on a new clinician on our team, Most of the time, especially recently, they've been somebody that has a chronic health condition and talking with them and hearing kind of the, the experiences I've had in the past that have been very abelist and very, um, traditional workforce kind of schedule and expectations.
It's really nice to able to tell folks, like, just let me know, and I get it. If you need to reschedule a meeting, if it's not like crucial and urgent and crisis, which not a lot of things actually are, we can wait and do that later today or the next day. And it's made me a good therapist to my clients with chronic illness because.
When they're having a day where they're not at their full capacity, we're able to modify the session, reschedule, take time and do something differently. And we work very well as a team together where I encourage them to tell me if you are at your limit, I need to know, you know, this is not going to be productive for you, and it's going to be frustrating.
And if you need to sleep right now, you need to slip right now. Let's see when we can reschedule and requires me to make some last minute adjustments, but I also get it. And I understand that what they're doing and what I'm encouraging them to do is set their boundary and speak up about their needs. And as a therapist, I mean kind of winning when they do that, I'm like, yes, you're doing good work.
Look at you setting a boundary. Um, even if that boundary is with me and I, I have to make the adjustment, it's still a very good success point when they are able to talk. Yeah, absolutely. I completely
agree. It's that's what we want our clients to be able to do.
So it's good work.
The last thing I wanted to touch on is you mentioned procrastination earlier.
We briefly kind of went over just briefly skipped on over it, but, um, you had said it in a way that was different than how I normally conceptualize it. So you talked about it in terms of neurodivergence and procrastination, um, and the way, which just the way you said it is, is it makes perfect sense to me, but I guess how I conceptualize it in the past is like not knowing how to listen to your body.
Um, and whether you, whether you have a neurodivergence or not it's,
um,
it's something it's a learned skill. Like learning how to pick up on the cues that are coming on before you get to that end point. Like, I can't do this anymore. Or, um, you know, this is now like sending me into a flare up. So can you talk about the, how, yeah.
How you conceptualize this from a neurodivergence lens, um, and maybe even how you kind of help explain this to your clients and help them learn to kind of pay attention to those cues before they reached that level
10. Yeah, that is, it's so fun. Sometimes I'll be talking to a client and I'll say something and I'm like, by the way, I'm talking to both of us right now.
We both need to hear this. Um, so especially with ADHD, but we also see this with, um, with autism, autism and other, uh, different neuro types is meeting. S like the sense of urgency meeting some of these different qualities to actually make a task happen. Whereas people who are maybe have a different neurotype maybe are able to do that quicker, um, because maybe their anxiety is like, if you don't do this ahead of time, it's not going to be perfect.
Super fun when you are anxious and ADHD, cause you're fighting internally. Um, but a lot of times what happens with doing tasks and procrastination aside from just the avoidance of, I don't know how to do that thing. So I'm scared to start, um, or time blindness of, oh, that actually takes me three hours when I thought it was going to take me 15 minutes because I don't understand the concept of time very well.
Um, there's this really great acronym and it's I C and you, and. What I was telling people. And I use doing dishes as an example, is that a task must have one or more of these category components, these qualities for somebody to go and do the task. So the first one's interest, so something must be interesting.
We must want to do it. It has to like have some level excitement doing the dishes is not interesting. Not a good time. It's not fun. There's nothing about it. That is exciting. So then moving through those, um, those letters. So the next one being C is challenge it. Having level of like game or difficulty to it is exciting.
Again, brings our interest to it. Um, dishes have no challenge to them at all, but we may find cleaning something that's like really gross or really like weird and nasty to have like some challenge level to it. The N stands for novelty or new. This has to be something exciting that has new components to it.
So the first time I do it, I'm like, Ooh, I get to figure this out has challenged. Again, there's nothing novel about washing dishes and the last one is urgency. So dishes get done when we run out of sync space or dishes, literally themselves. And so when I'm working with clients that have these procrastination tendencies is how do we hack ourselves and create interest challenge, novelty, or urgency faster.
And that can be through creating like more of an urgent timeline. Like my friend is coming over and I don't want them to see the sink. It could be a challenge. I'm going to set the clock for five minutes and see how many dishes like can do, or it could be maybe a challenging game. Like what can I, how can I fit all of these into the dishwasher and maximize my space.
So when I'm working with. With a neurodivergent component of procrastination looking at how do we fix those things? When I'm adding the intersection of chronic illness, especially physical, chronic illnesses or things that pop up and create a limitation, our physical ability, if you are too heavily, someone who procrastinates a lot, I've had this happen where I'm like, oh Friday, I've got so much time that day.
I'm going to do all of this work on Friday. Friday comes along. I wake up with a migraine. Well, my day of work has now been wiped out via this migraine. So really trying to work with clients on how do we find a balance of when we're feeling well or well, to our baseline, better on our baseline to do the activity and accomplish the task.
Without overdoing it and creating a, uh, a pacing issue of now I don't have energy for the next day, but to not leave tasks until the very end of your time limit. Cause then you have an anxious moment of this. Thing's now urgent. And my symptom flare up has created a boundary or a barrier to me doing the thing.
So really trying to help people identify those challenges. How do you take a good day of energy and not have it turn around on you, but also manage those, those energy points essentially for another time, it's very difficult, a lot of trial and error, a lot of failing going. I should do that differently next time.
So
that's yeah, that was exactly my next question. How do you, how do you do that? And I think that is the answer trial and error. I know that's been the case for me anyway. And within that trial and error comes a lot of the self-compassion work and being able to put down the self-criticism and what happened is morally neutral.
It's not a good, or you're a good person or bad person it's oh, that didn't work out when I did it this way. Like what can I change about that? Which is so much different than like, God, I always do this. Or, you know, some of that
and you have to get a little away from that completionist concept too. Um, one thing I've loved about means, and the way that, uh, tech talk and Facebook reels, Instagram reels have created a lot more awareness on neurodivergency and a lot more awareness on chronic illness and living with physical, um, mental or emotional limitations and restrictions is people really encouraging.
The idea of just do a bit, you know, just do five minutes and that's better than zero. And when you have chronic illness, you have to remind yourself that a lot that if I can go walk around the house, even for three minutes, that is more than zero minutes of me not doing it at all. And so when we're going back to this idea of our identities changing, whether it be athlete, artists, active parent, so many different things, employed person, when we're going back to that idea is that we have to make those adjustments.
Can I do 10 minutes in the pool? Or can I clean up for five minutes and make this a little bit better, but not tear myself apart that I can't do what I could do before. And that grieving process is, is really challenging, but you have to remind yourself that like your new normal. Is not bad and it's okay.
And we're going to adjust and work through it. We might need to ask for help more, which we have to practice doing. We might need to invest a bit of money into something that makes things easier for us. Right. So that may be okay. How do we budget and save for a dishwasher? Because washing dishes is, is not something that your energy should be used on.
Cause you need to use that energy on yourself or your family or your interests and hobbies and enjoyment of life. And how do we make a plan to meet those needs so that you can take your limited energy and use it in a way that's more fulfilling for you then? Well, the only thing I was able to do today was wash dishes and feeling like, is that what you like?
Good job. You did that, but it doesn't sound exactly like what you want to be doing with. Yeah. Yeah.
Or even buying disposable plates and cut up pre-cut veggies, which are more expensive and not environmentally friendly, which is a whole other topic. I'm all for some good reusable glassware, but, um, there's also a huge, like moral component to being eco-friendly now.
And that's a whole other podcast episodes, but, um, yeah, it's okay to use reusable plates. Um, there's if you are someone who's very like, wants to be eco-friendly it can hurt your heart a little bit when you throw that plate away after one-time use. But yeah. Do you want to be spending your day? Cleaning like doing dishes and then being run down after.
Or do you want to try to go on a hike today? Because that's what life is, is about. It's about human connection and the dishes don't get you human connections.
Yeah. It's yeah. The dishes would actually has come up a lot for people. Um, even the idea of like, what if you just put all your dirty dishes in the dishwasher and you ran it twice instead of once, like I get that it's using energy and water and those are precious resources.
However, you're tearing yourself apart and your negative self-talk has gotten really severe. And if we can like ease that burden just a bit by putting another little bit of soap and clicking a button again, um, let's do that and spend that energy with our, with our family, right. Or running after our kids or something that, like you said, it's it's human connection or brings us joy and fulfillment.
That's fine. Well,
this has been really insightful. Um, is there anything that you would like to share that we didn't get to talk about or anything you'd like to leave listeners with?
Good question.
Could I talk a little bit about the identity shift when it comes to employment and disability? Um, so I wanted to share a little bit about the shifts and identities that happen related to us being a person who's employed versus somebody who is underemployed unemployed or on disability. Um, because I think a lot of people don't realize that chronic illnesses can greatly impact your, your work-life relationship.
And that doesn't always mean the extremes of I'm working or I'm, I can't work at all. It's such a spectrum. And I don't think there's a lot of recognition in the middle gray areas of the spectrum where maybe you're still employed, but you're no longer able to work in your field because your hands can't keep up with whatever your task was or you can't sit or stand for that amount of time.
So then our identities in general, especially in the us are built off of productive. When we meet somebody at a party, what's the first thing they say like, oh, Hey, this is my name. Here are my pronouns. So what do you do? Hate that question? Um, I much prefer asking the question of when you're not at parties, what are you usually doing?
Let them fill that in. But we do put such an emphasis on you as a worker and your, you know, quote benefit to society. And so that becomes a really sensitive topic for somebody who is experiencing under employment or unemployment. And when you work with clients with chronic illnesses, it is very unfortunate.
How aware you become of the flaws in the system, in supporting people with those limitations. And the fact that disability is such a hard thing to get people think of it as, oh, well, some people get disability are lazy and it's like, absolutely not. There are people who need disability. Who are not recognized as a disabled person, even though they have cancer or they had a transplant and they have these things that have created an inability to work.
I mean, just the difference between I can't work in person because of COVID because I have this underlying health condition creating an underemployment problem, and people looking at it as, you know, a character flaw or a laziness component when it's, these are reasons I can't do this. And I think that that's not emphasized enough.
Um, and that people really who don't have experienced chronic illness or don't have experience with disability at all, really don't understand that there's such a gap in. In support and resources for people who are in that gray area of the spectrum of working full time, gainfully employed in their field with a living wage and the other end of the spectrum, being somebody whose disability is so recognized by, um, you know, the social security process and is recognized easily as a disability versus folks who are fighting to have money come in or having to make decisions like, do I get married and lose my disability or lose my insurance to gain other elements of support that comes from marriage, whether that be financial stability, emotional connection, feeling secure, feeling legally connected to your partner or having legal, you know, uh, legal rights over things and having to make a decision about, well, what do I lose by doing that?
And so you end up with a lot of people who. In situations that maybe aren't healthy for them or they're in abusive situations or just living really, really tough lives because of being in that gray area, you know, and how bad it feels to like kind of wish like you, weren't more disabled, so you could get what you needed and that's not something anybody should ever wish for.
And we should ever want that. Um, everyone who needs it should be able to get help. And it's just not, it doesn't exist. It's not there. So that's a big identity. I think that people don't realize like the, the layers to it versus when we see that somebody has, um, or they share their experience and their disability is much more apparent or it's much more recognized by the government than somebody who's has a quote, temporary disability, even though temporary for them could be two years.
That's a long time ago without getting. Yeah,
absolutely.
And how much work it takes to prove that you need this help. Um, and then to still get denied a lot of the time, unless like you said, it's very visibly clear. And that's where I think community comes into play so much for now anyway, until something changes, because it's so hard to go through these things alone.
Um, and
with this. At least when you're in the chronic illness community, then you have people to kind of commiserate with. Um, and then when you are able to see a therapist who specializes in this, it's not just commiserating, it's not just venting.
It's also, how can we cope with and manage a lot of these really difficult emotions that pop up as a result of all of these different things, identity loss, grades, um, challenges that pop up that are maybe beyond our, our capability.
It's just getting that support. Yeah. And as, as a therapist who ha who lives with chronic illness, when you look at the resources you have, you know, we have to make some really tough decisions for ourselves.
Do I access a supportive space for people with chronic illness? And then it become a dual relationship or conflict of interest that my clients are part of this space. Do I leave it for them? And then I don't have a space to go to. So it becomes really challenging when there aren't enough types of resources for people that access in, in ways that feel safer or are even accessible.
It makes sense. Yeah.
Any other thoughts about this that you want to share or anything else that comes up for you right
now? I don't think so.
Alright. Well, thank you so much for everything you shared today. Um, I'm looking forward to airing this episode and, you
know, especially with the,
um, content around the gaming community, it's not something that I live in or that I've been able to share much about. So I'm excited to share that and have something
new for people.
Thank you.
Episode Summary and Notes
Meet Karen Lill: Karen's unique perspective, combined with her personal experiences, offers valuable insights into what it means to grapple with the identity shift that often accompanies a chronic illness diagnosis. Karen's journey is a testament to the unpredictable nature of life. A former athlete who participated in high school sports and even ran a full marathon in 2013, she was at the peak of her physical prowess. However, her life took an unexpected turn when chronic illness entered the picture. Like many athletes, Karen was accustomed to pushing herself to the limit, powering through pain, and always striving for more. Little did she know that her marathon would mark the beginning of a journey that would lead her to water aerobics, of all things, as her primary form of exercise.
The Shift in Identity:
As Karen shared her experiences, she touched on a crucial aspect of living with chronic illness—the profound shift in identity. For someone who had spent years honing her athleticism, this transition was not merely physical but deeply emotional as well. She recounted the difficulty of moving from intense two-hour dance classes to gentler forms of exercise like yoga and eventually settling into water aerobics. It's a transition that many former athletes with chronic illness can relate to—a shift from a life of vigor and endurance to one marked by cautiousness and adaptation.
The Struggle to Be Understood:
One of the most challenging aspects of this identity shift is the struggle to be understood, both by ourselves and by those around us. Karen shared how, even with a supportive circle of friends, there were moments of doubt and uncertainty. Friends would invite her to activities like hiking or bowling, assuming that because she could walk and appeared physically able, these activities should be manageable. However, the reality was far from their expectations. The fear of not being able to keep up, of inconveniencing others, and of having to cut short an outing due to physical limitations can be emotionally taxing.
The Importance of Empathy:
Karen's story emphasizes the importance of empathy and understanding when interacting with individuals living with chronic illnesses. Whether visible or invisible, these conditions can drastically alter a person's life and identity. Instead of making assumptions, it's crucial to engage in open and empathetic conversations. As Karen eloquently put it, "People respond very differently with how you look and what they expect you to be able to do because you don't have anything broken visibly or you don't use mobility aids." This reminder invites us to approach every individual with kindness and consideration.
Clear Communication in Challenging Times:
Karen's journey with chronic illness has taught her the importance of clear and honest communication. It's a skill she had to develop not only for her well-being but also to foster understanding among her friends, family, and support network. One significant aspect she highlights is the need for trust in these relationships. Trust that the people you are sharing with will believe you and respect your boundaries. Trust that they will prioritize your well-being and respect your limitations.
Navigating Ableism and Self-Doubt:
Society's ableist attitudes can deeply affect individuals with chronic illnesses, leading to self-doubt and second-guessing. Karen acknowledges that even those with chronic illnesses can internalize these societal norms. It's a reminder that self-compassion is just as vital as clear communication. Understand that it's okay to prioritize your well-being and that your needs are valid.
The Fluid Nature of Chronic Illness:
One of the challenges individuals with chronic illnesses face is the fluctuating nature of their condition. Some days may be better than others, and this unpredictability can make it challenging to communicate consistently. However, Karen emphasizes that it's crucial to adapt to these changes and be flexible in your communication with others. Be honest about your current capabilities and needs, even if they differ from what was discussed previously.
Advice for Effective Communication:
As someone who has navigated the complexities of chronic illness, Karen offers valuable advice for those facing similar challenges:
Trust Your Support Network: Surround yourself with individuals who believe in you, respect your boundaries, and genuinely care about your well-being.
Open and Honest Communication: Be clear and direct about your needs, limitations, and preferences. Trust that the people who care about you will listen and understand.
Self-Compassion: Practice self-compassion and acknowledge that your needs are valid. Do not let societal norms or ableism undermine your self-worth.
Flexibility: Recognize that chronic illness can be unpredictable. Be flexible in your communication, adapting to the fluctuations in your condition.
Internal Experiences and Setting Boundaries
Living with chronic illness often means dealing with internal experiences that others may not fully grasp. Imagine explaining your pain or fatigue to someone who mentions a week of discomfort, thinking it's comparable to your years of suffering. These situations can be challenging, but it's essential to give people the benefit of the doubt and trust that they will honor your boundaries.
Advice for Individuals Coping with Loneliness and Isolation:
Individuals with chronic illness often experience loneliness and isolation, even in online gaming communities. To combat this, it's crucial to find a balance between online and in-person social interactions. While online friends can be incredibly supportive, nurturing real-world connections is equally essential.
Encourage individuals to expand their social interactions beyond gaming. Encourage them to talk about their mental health and emotions with friends, whether online or offline and seek out opportunities for face-to-face interactions when possible.
Navigating Life with Chronic Illness
Living with chronic illness requires navigating a unique set of challenges. Setting clear boundaries, pursuing passions, and seeking out supportive communities can make a significant difference in an individual's well-being. Organizations like Take This demonstrate the power of combining a love for gaming with a commitment to mental health advocacy, creating a more inclusive and supportive gaming community for all.
Procrastination and Neurodivergence:
Procrastination is a common challenge, especially for individuals with neurodivergent conditions such as ADHD. The participant introduces the concept of procrastination through the lens of neurodivergence, shedding light on how neurodivergent individuals may struggle with tasks lacking interest, challenge, novelty, or urgency.
To combat procrastination, the participant suggests strategies like creating a sense of urgency or challenge for mundane tasks. They encourage individuals to identify their moments of peak energy and use them wisely to avoid feeling overwhelmed. It's a trial-and-error process, and self-compassion plays a crucial role in learning and adapting to these strategies.
Navigating Chronic Illness in the Workplace:
The discussion also touches on the complex issue of navigating employment while living with chronic illness. Many individuals find themselves in a gray area, where they are neither fully employed nor recognized as disabled. This predicament can lead to a profound shift in identity, as societal norms often equate identity with productivity.
The participant highlights the flaws in the support system for individuals in this gray area, emphasizing that many people are fighting to receive the recognition and resources they need. They also discuss the difficult choices that arise, such as whether to get married and potentially lose disability benefits or remain in an unhealthy situation.
The Role of Community and Self-Care
Throughout the conversation, the importance of community and self-care emerges as a recurring theme. The chronic illness community provides a vital support network, offering understanding and empathy that can be hard to find elsewhere. It's a place where individuals can commiserate, share experiences, and learn coping strategies.
Conclusion:
Living with a chronic illness is a journey filled with challenges, but it's also a journey of resilience and self-discovery. Karen's experiences as a former athlete turned water aerobics enthusiast offers a unique perspective on the profound identity shift that accompanies a chronic illness diagnosis. Through her story, we're reminded of the importance of empathy and understanding, especially when interacting with those whose struggles may not be immediately apparent. In the face of adversity, Karen's resilience shines through, serving as an inspiration to us all.
The chronic illness community provides crucial support, understanding, and a safe space for individuals to share experiences and coping strategies. Embracing one's limitations, setting boundaries, and seeking support can empower those living with chronic illness to navigate the challenging path toward a more fulfilling life.