Title:
Kathryn Swaim: A Tribute to Brain Tumor Awareness Month
Subtitle:
Finding Power in Chronic Illness & Control Beliefs
Transcript:
Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths.
Let’s go.
Welcome back to Pushing Forward with Alycia.
I’m Alycia Anderson. Today’s guest Is Kathryn Swaim, PhD student from North Carolina State University. She is studying lifespan development Psychology.Our paths crossed when we were talking about events and advocacy and all kinds of cool things.
Her research and her focus fascinated me. Her story about chronic illness and intersectionality of identity. She focuses on the research of belief, stress, being in older adults. And with people’s chronic conditions, such a hot topic.
Welcome to the podcast, Kathryn. So good to see you.
Kathryn Swaim: I’m so happy to be here. Thank you for having me.
Alycia Anderson: Oh my gosh. Thank you for coming and telling your amazing story. That feels really important to share with our community. I would love it if you would tell your story, whatever you’re comfortable with. let’s talk about chronic illness. What your lived experience is, give us a little bit of history on this relationship that you now have with the term chronic illness?
Kathryn Swaim: Yeah, absolutely. I will say it’s definitely been a lot of transition through the health stuff that I’ve dealt with. I’ve had migraines and headaches since I was like 10 years old. I feel like that’s when I first started noticing it and they just got worse as I got older and then My senior year of undergrad, like I started developing really intense migraines that would have me out for a day or two and then the summer right before I went to my grad program, I started having these 10 second, really intense, throbbing headaches. and they would pretty much knock me down. Like I, my vision and hearing would go out. It was super scary. I remember like the day it started, it scared me and the person I was with like a lot because I was like, Whoa, like everything just switched, and then once they started, they never went away. It’s I would laugh, they would happen, I would turn over in my sleep, they would happen, stand up too fast I could be sitting, having a drink with some of my friends, almost pass out on the table. And so finally, I got in to see a neurologist, and we were talking about these things called activity migraines, and my neurologist was like, I want to do a scan just to see what’s going on, but we didn’t anticipate anything coming up. I got the scan on Thursday during my spring break, and then on Saturday, I received a MyChart notification. And it said I had a mass in my brain. And I had so many things like run through my mind. But I also didn’t feel a whole lot of anything because I was like, who do I talk to about this? Cause, my doctor’s office was closed. And, I was at my parents house in Greensboro. they were downstairs, I’m looking at my phone, and I’m like, Oh my goodness. What do I do? I had no idea.
Alycia Anderson: First of all, to even find out that way seems pretty traumatic. That’s one of my worst nightmares is to open up my chart and see something like that. That hasn’t been explained to me. Like, how do you emotionally process that?
Kathryn Swaim: I still don’t know how I just went about my day. I went down and told my mom. She stood up and she hugged me and then she said, are you okay? Like she handled it probably in the best way possible because neither of us knew what to do. I just was like this is here. I don’t know what does a mass mean though? It can mean so many different things. Is it cancer? Is it benign? Is it a cyst? What, what exactly is going on?
Alycia Anderson: My neurologist called me on Monday, and she was like, they couldn’t tell the dimensions or anything on the screen, because it was a CT scan. And so she was like, the type of tumor you have will probably have to be resected surgically taken out. And but she couldn’t give me like any other information besides that she had to refer me out. And so that same week that she called me, like they had me in and seeing a surgeon at this hospital very quickly. And It was terrifying had no preparation of what it was gonna be, and the doctor sat down and put the image up on the screen after I got another MRI, or got my first MRI for that, and it was the size of a plum, just sitting next to my brain stem. And so it was benign, but it was a cause of a lot of the problems I had been having that I had not connected. I actually ended up finding a doctor at Duke Dr. Alan Friedman, and he directed me to my current wonderful surgeon, Dr. Zomorodi. And He gave me the absolute most validation in experience that I’ve ever had. My whole life, I couldn’t describe a lot of my headaches that I had in the pain that I felt. Like I was always very worried about being perceived as lazy. And I also didn’t want that to come true either with having this information. I didn’t want my life to change, but it did. It wasn’t all bad, though.
Kathryn Swaim: It’s it’s crazy to say that from a brain tumor, but there are so many parts of it that were actually beautiful.
Alycia Anderson: let’s talk about those two things for a minute.
Kathryn Swaim: Yes.
Alycia Anderson: So first of all, you were worried that you would be perceived as lazy. Because I’m assuming, and you can fill in the blanks, but I’m assuming it’s because your chronic illness was showing up in a way that was not identified and you were tired and you wanted to sleep.
And, I get a migraine every once in a while, and I’m in bed I’m not going to, I can’t imagine having them regularly as you were. When you told me the story initially, I was like, oh, my Lord, it is my worst nightmare to have chronic migraines like that. Where does that stigma come from the being perceived as lazy because I think a lot of us do that from a disability standpoint from like an internalized ableism versus what society is thinking about us and us wanting to reject that.
Can you talk a little bit about that?
Kathryn Swaim: Absolutely. I definitely know a lot of it comes from work culture and our society, as far as like the expectation to go. I’ve always had a really tough. time knowing my balance and I still struggle with that. This this chronic illness that I’ve had, like with the migraines, I found ways to work around it until I couldn’t.
And I realized like that wasn’t necessarily the healthiest thing. I had a lot of people around me ask the same thing of like, why? What’s, Keeping you from actually just like taking a minute. And I think it’s for me and I’m not, it’s something to reflect on. Like I didn’t want to be perceived as less or not capable. And, but I didn’t actually know what that meant. I think I never put thought into it until I really had to face like the potential of having a lot of things that I love change. And so I do think a lot of it is society. It’s a lot of, a lot of push in education and the fact that disability and struggles are not talked about the way they should be.
I was just having a discussion in school about how, even in psychology, the literature and outline around disability is so limited. And it’s been very confined to a specific way of thinking and disability research has somewhat been trying to shift the focus of that, but a lot of times this push is only coming from one perspective of ability.
Alycia Anderson: What is that narrow thinking in the psychology books today? What does that look like?
Kathryn Swaim: I do think a lot of it is shifting and especially in the area that I work in. I have, there’s so many great people in the department who are very passionate about this, but I think It mainly comes down to people, able bodied people, are trying to do research on areas that they have not experienced in a way that is limiting. And so it comes down to like even talking about having who have experienced certain things or have the first hand knowledge actually being involved these decisions, in these designs, in the resources that are going to be applied to helping the specific community that it’s meant for. Because a lot of times in psychology, there’s studies that are done, but do they actually fully apply? I don’t know. And I think that’s the conversation that’s been happening for a while.
Alycia Anderson: I agree with you. We’ve had a couple other people on the show that have had varying chronic illnesses and this medical model that we’re looking at from a disability standpoint. They had a lot of the same fears and, or The suggestions came from the doctors literally of you’re lazy, this and that and I think that you’re right.
Like the lived experience if you don’t understand it it’s hard to understand it, so that’s really, Unbelievable.
Kathryn Swaim: I think it’s also just knowing what disability is, the definition around disability, I feel like has changed a lot, or some people don’t actually know, like they have an image in their mind, but even talking about mental illness or things that stem from that, people don’t understand that disability can look like a lot of forms. I know when you and I talked the first time you told me about the apparent versus non apparent disabilities. And that’s such a key piece, because I feel like so many people only focus on the apparent disabilities and what that can look like. And especially with someone that has things that kind of, Came up in my early twenties.
Like I’ve had to shift my own perspective on how I view disability for myself. Cause a lot of times people, they think about sick illness, they think about chronic diseases. They’re like, Oh, that happens when we’re older. That happens way down the line. Not to me, but that’s not the reality. Like we all typically will experience disability at some point. And I don’t think that’s very understood and why sometimes all of the stuff that we’re talking about may be limited.
Alycia Anderson: Absolutely. You’re so well articulated in this. I can’t wait to see what you do with your career. Honestly. Okay. So you mentioned also, when we started talking about this piece, the other side of it has been the good that’s come out of this lived experience. What is the good you’ve experienced?
Like what did you mean when you said that?
Kathryn Swaim: Oh, there’s so much that’s the thing is like, there’s a lot of difficult and challenging aspects, but the good parts also really like stick and I feel like they keep going. First I will say the people around me that I am close with, like the support I had was insane. Like, and even still now, like the, for my parents, my friends, my, faculty at my program and all the other peers and students were wonderful.
And so having connection with people and having open discussions about these things, I will say my department has been excited to have more discussions around this. I came to a group of the faculty last semester and they were asking some of the students like what would we want more of and I was like I think we should have some form of like training on disability and that’s why like you and I met is because I was looking at guidance on how to do this and just seeing how discussions from developmentalists and from people who have gone through their careers all the way through this. We’re able to work together to find these things. And then also my overall outlook on life has shifted in a lot of ways. I, some of it, I said, it’s hard. Others, I feel like it’s made me more understanding of context. I think that is so important when, especially as a researcher who wants to focus on the health field and the struggles that people go through and caregivers and all the sites to somewhat help others understand that these processes that we’re going through and these experiences that are so difficult. There’s a reason why, and it’s also things that can help. And so as I was going through this I knew a lot of the stuff that I might be dealing with, cause like I do study control beliefs and I study like how uncontrolled people feel of their lives, their relationships, how they can achieve their goals, that type of thing. And so I’m going through this process of something that also was one of my worst fears of having happen come true. And I’m experiencing all these things and I’m knowing the science behind it. I’m like, But what is that like actually translate is like I can see these theories I can see these words, but as a person, what can be done to actually make sense. And so I think as a researcher, it’s my eyes to a lot of the areas that maybe. Without this, I maybe wouldn’t have noticed like certain inequities in the health care system and experiences with like age and just overall connection, I think is a big part of it. And so when I’m moving forward as a psychologist, I’m trying to be open that not every single person’s experience is going to be the same and generalization can be really hard.
Alycia Anderson: And how refreshing is that in the medical industry in general? I would believe, because I think we’re often pigeonholed. Into one persona or the other, control belief, tell us about that.
Kathryn Swaim: Oh, I could go on a rant about this. I, it’s become one of my favorite things I like to look at in different populations of people that have been through illness or adults specifically. But, Like I said, it’s how in control someone feels or how like they feel they can achieve their goals or how much influence they feel like they have over their health or over medical decisions.
It can relate to many areas of a person’s life, but it’s been linked in previous research to a sense of well being. And so people who feel more in control of their lives, their health, their relationships typically might experience more long term. Wellbeing and that can also translate to physical health over time. And so there’s a lot of facets that I really am excited to explore with it. And my advisor, Dr. Shahan n Newport, she is the experts in this And so she has a lot more to say, but she’s honestly guide me very well in it. And it’s funny, I started looking at. All this stuff before my diagnosis. And then it’s within that semester, I was giving my first presentation on it.
I was like, Whoa, like this is happening like to me right now.
Alycia Anderson: I think that’s a fascinating path to go down from a psychology standpoint. Like I’m ready to sign up myself. Let me know when you’re taking patients. I love that theory. That’s amazing.
Kathryn Swaim: thank you.
Alycia Anderson: Because I know for me personally, when I feel like I have a grip or grasp or some control over my life that is going a mile a minute or my own medical care or being strong enough in my own self to advocate when I feel like I need to, and all of those, when I feel like I’m empowered by that, I feel much safer.
And when I don’t, I feel unsafe. I love it. And I love that you’re doing what you said other more medical professionals should do or people in your studies, which is if you have the lived experience. Put a couple of things together. I can’t even imagine how much amazing research you’re going to produce with both of those like facets in place.
Can we talk about intersection
Kathryn Swaim: Yeah, I’d love to.
Alycia Anderson: identity and how you’re focusing on that within the healthcare experience that you’re studying and what all of that means to you.
Kathryn Swaim: Yeah, absolutely. And there’s so many parts of it. I think, and when we talk about like intersectionality, like we very much have to realize that is a very complex word and it doesn’t apply just to one specific group of people or meaning. And I think that’s so important when talking about illness or how people cope with illnesses.
Like you have to understand one diagnosis. might be the same as another or very similar, but the experience the person goes through may be drastically different. And especially when it comes to what you’re talking about, Treatment within healthcare. I think knowing yourself can be one of the best things to do. coming from a person that’s lived through some of this is not as much on the research side, but developed such a voice for myself. that I did not really have previously. And I think, coming from the research side, understanding how, first of all, women, young people, and older people are treated in the healthcare system so differently, and how it can be so hard to find your voice and then to have it be heard by people, can can be such a struggle. There’s so much invalidation within the healthcare system and getting a diagnosis. I am a young woman, haven’t been super
assertive in the past. I very much learned quickly I had to find my voice in that.
Otherwise, I might not get the care I need. And it’s not that these doctors and professionals are not capable. It’s just, they have so much they’re doing. They have so much going on and they know the facts, but you know your body the most. And that’s the thing is a lot of times when you’re younger, when you’re older, things will get pushed off when you’re older.
People are like, oh, it’s just a part of aging. That’s normal. And a lot of things are typically written off when you’re younger. It’s almost like the opposite. It’s can be X, Y, and Z, but it’s not actually getting to the root of the problem. And a lot of times. Pain management is written just to treat the pain, but not the source of the issue. And that’s what I was going through for a long time. It’s like we were treating the pain I was having, but not actively looking to see what was causing it. And so now it’s I’m a primary instructor here at State, and so a lot of times when we get into the developmental sections around health, take a minute and I’m like, every single one of you is unique and has had a different lived story and has different circumstances when it comes to insurance, socioeconomic status, your race, identity, ethnicity, everything that comes with it. you have to be able to recognize that and the importance. And so when you are taking charge of your medical care. Knowing the history and then also find the right people that will see that. And so I try my best to say your voice is the most powerful tool you can use in the healthcare system, it might not always be heard, but that’s the thing.
I had to go through a couple surgeons that were not the best people and I did not feel heard. I felt dismissed in a lot of ways. Even when we saw my tumor, we saw what was happening. Um, I felt a sense of blame and I was sitting here thinking, I was like, if I was in my 40s, and if I had a different gender identity, like, how would I be treated? And then it took me finding the surgeon I have now that said, None of this matters, but your health and how you feel and getting you to a point where you get to do what you love. And that’s the thing is I try to tell people, I’m like, don’t ever go with your first opinion. Find others you might be getting treatment that you don’t even realize is not okay.
Alycia Anderson: I found doctors like finding the right care for me has been like speed dating.
Kathryn Swaim: Yeah, it is.
Alycia Anderson: Like you got to see if you have the vibe to, like they, like you’re saying, like they get your, who you are,
Kathryn Swaim: They have to.
100%. Z is probably one of the most unique surgeons I’ve ever met he’s the kindest human and the morning of my surgery, he came in, and it’s as soon as I saw him, just this of relief I had. I was like he’s got me gonna be good, and after we said we were gonna make a handshake and he helped me like figure that out when I was zonked out in the hospital but it is, it’s hard, it, especially when you were going through so many doctors and you’re not finding answers, and it gets tiring, it’s a very exhausting process when you’re already dealing with so much pain, it’s almost like you’re screaming for help and no one’s hearing you, Where they are hearing you, but not taking you seriously.
Alycia Anderson: which might be worse.
Kathryn Swaim: It is.
Alycia Anderson: It probably is. It actually is. What obviously your self advocacy voice is strong. It feels I’m going to assume maybe even like a central theme in your life at this point that you’ve grown into. What does that mean to you? What does self advocacy and advocacy in itself mean?
Kathryn Swaim: Ooh, such a complex question, but I like it. I think for me, it’s trusting myself and my body. I. knew something in my gut. Like I was like, something is wrong. Something is wrong. People are telling me there’s not, but there is. I didn’t listen to it a while. And then once we did, I was like, I felt it.
And I don’t know. I think for me, it’s listening to yourself. I feel like every single person has some form of an intuition. around these things and around is happening to you. Cause the thing is that you’re gonna tell your symptoms to your doctors, but they’re not in your body 24 seven. I think for me it’s finding, even if you are so nervous, like voicing your opinion, just pushing still, make the appointments, try to be there.
And if someone is, like I said, treating the pain with like meds, but not going deeper than that. no, I would actually like to try to find the source. I think it’s Trying to think like beyond that.
Alycia Anderson: No, I think that’s great. And I think from a self advocacy standpoint and chronic illnesses become finally as it deserves, having a light shine on it, where people of disabled people are starting to feel more comfortable. Sharing and being more vocal about it. I think it’s really that’s how we’re advancing in these conversations, and you’ve got a strong voice in it.
So I think that’s really. Powerful. Honestly.
Kathryn Swaim: because I will say like when I first when I woke up from surgery. I had a lot of physical changes that I wasn’t prepared for that were visible to other people. And
Alycia Anderson: What’s an example of that?
Kathryn Swaim: so I had double blind or double vision. And so I saw two images out of my eyes because my right eye was somewhat restricted of movement.
And then this side of my face also had weakness and some form of like paralysis to it. And I went into surgery thinking the biggest risk I was going to have was losing my full hearing in my right ear. And I woke up and other senses were switched a little bit and changed. And it was very obvious that something was different with me and to the people who know me and love me, it didn’t feel like anything, but when I was out and I think I shared with you back in our first meeting, but I was in line getting a sandwich, and this guy comes up behind me, taps me on the shoulder, and says, what’s wrong with your eye?
Alycia Anderson: I remember that.
Kathryn Swaim: was like, I just had brain surgery, actually. And the look of like shock on his face, and I’m thinking, you’re gonna ask a question, be prepared for the answer. Even with that, it’s The strong voice I felt like I had developed before my surgery, I felt like somewhat dissipated for a while. I felt like I was knocked down a bit, Because there was challenges I wasn’t anticipating. And this comes back to the control thing, it’s What are we mentally prepared for? What do we feel like we can move through?
Alycia Anderson: Yeah. And
Kathryn Swaim: much in the trenches of out what I had been through and finally coming to terms with that. And
Alycia Anderson: traumatic. I think that takes time and we need to give ourselves grace when we’re experiencing those things and the more we practice the stronger we become in our voices and it doesn’t happen overnight, especially in that type of scenario, like having brain surgery, that’s so scary for anybody and you’re young and you’re like trying to figure it all out.
The control factor, I can’t imagine anybody’s like in full control of their emotions at that point, so I think we have to practice it and those layers of practicing, we’ve become a lot stronger.
Kathryn Swaim: And it’s hard to to practice it, I think, or in what context that’s the thing is with this, I felt like I had it, and then I was ready. But then I woke up and I was like, I have no idea. I don’t know what I’m doing. This is, this could be my new reality. We weren’t sure exactly what it would look like. And I’m very thankful for the support system I had because they helped me realize how great life can still look. And I’m, I remember one thing that Dr. Z told me it was in the week before my surgery, we were sitting in one of the way or the rooms he looked at me and he was like, What are you so scared of?
And obviously the brain surgery, but he was like outcome wise. And I told him, I was like, I am terrified of not being able to do school anymore. That something could keep me from doing that. Cause that’s been my whole life. I’m 25 years old and school has been my thing.
Alycia Anderson: Wow.
Kathryn Swaim: he looked at me and he was like, It doesn’t matter what physical things happen to you, you are still you inside and you will find a way to do it.
Alycia Anderson: Oh, I’ll just give me the chills.
Kathryn Swaim: And it stuck with me. Like I said, he is one of the most amazing people ever in this world.
Alycia Anderson: Can we tell our audience, our listeners how it shows up today? Because I think he was right. Like you had some things you needed to. I’m sure go through therapy and get your body back to where you were hoping it would be like, where are we today?
Kathryn Swaim: I’m doing it. I’m in school. I’m in my third year. When all this happened, I was in my first year. And so I have completed the milestones on time, wildly. I still look at myself and I’m like, Whoa, what? You could have slowed down. But he was right. Like I, at the core of me, am still me and I’ve learned more. And even in that time when I was learning how to brush my teeth again, and not being able to braid my own hair and things like that, and having to rely on the people around me thinking I wasn’t me, I still was. I was still thinking about school. Honestly, thinking about getting back to teaching and doing all the things I loved is what got me through it. keeping those words in my mind that I’m still me and I’m going to accomplish it Something to look forward to and we’re here so
Alycia Anderson: You are so amazing.
Kathryn Swaim: You are amazing. I appreciate
Alycia Anderson: Honestly, I
Kathryn Swaim: this. I will say it worked out really well that we pushed this because I think back when we first were talking I was not as safe talking about this. I didn’t
Alycia Anderson: actually feel like you’ve grown into it.
Kathryn Swaim: therapy can do wonders for you. And also just like the work I’m doing, the people I’m around, like I’m just, I’m finding ways to be confident in my experience and find what you said, find power in where I am. Like, I do have some hearing loss and I. That was really hard at first, but I find power in it because now I understand, like I said, so many different contexts and relating to people and being there and helping them say, you know what your body’s doing. Trust yourself, because I wish someone had done that for me, very much
Alycia Anderson: So congratulations. I can see. I definitely can see the growth. Thank you.
Kathryn Swaim: Thank you. That
Alycia Anderson: 100%.
Kathryn Swaim: lot to me.
Alycia Anderson: I’m actually glad you said that because I was noticing it but I wasn’t going to call it out. And but I see it. So we end the show with a pushing forward moment. And is there something that you can, I don’t know, a little nugget of motivation that you can give to our community that they can take away into their lives and worlds to find some of the power that you have found?
Kathryn Swaim: I’m trying, because I’m trying to think, because there’s I feel like there’s so much I could say from that I know I’ve been saying this so I don’t want to be repetitive, but I
Alycia Anderson: Repeat it. Okay. Repeat it.
Kathryn Swaim: trusting yourself,
Alycia Anderson: Say it again.
Kathryn Swaim: trusting yourself
I think the best thing you can do for yourself is trust yourself, and know that you know your body and you are the only one living in it every single day.
Alycia Anderson: I think it’s really good.
Kathryn Swaim: Things will happen. That’s the thing is we as people will go through stuff, we will go through hard things, but we’re also all resilient. It’s just tapping into that. Sometimes takes time. It takes things to happen. And most you can do is give yourself grace and trust that you’ve gotten yourself this far. And you’ll keep doing so.
Alycia Anderson: Grace. Trust. Believe. I love it. Thank you for coming on the show.
Kathryn Swaim: Yes. Thank you.
Alycia Anderson: We’re going to leave all your information in our show notes so our community can connect with you. And I know that our friendship is going to be growing further and farther and longer and always. And I’m really happy that you came into my life.
Kathryn Swaim: Me too. Thank you so
Alycia Anderson: Yeah.
Kathryn Swaim: Seriously, like I, you helped me so much actually find power in myself and in my identity, even from that 30 minute conversation we had,
Alycia Anderson: Oh my gosh. Thank you
Kathryn Swaim: I swear that conversation we had sparked so much for me. And it made me just feel like I do have a story and it matters and it can matter to me. I appreciate you. Seriously.
Alycia Anderson: does matter and it’s going to matter. It matters to a lot of other people too. All right, we’re going to wrap it up. Thank you to our community for showing up today. If you love this episode, please share, subscribe, like all of the good things. And we will see you next time. This has been pushing forward with Alycia and that is how we roll on this podcast.