Episode Transcript
Building Resilience with Dr. Katie Gorman-Ezell
[00:00:00] Jill Brook: Hello fellow POTS patients and terrific people who care about POTS patients. I'm Jill Brook and today we are going to discuss resilience with our guests Dr. Kathleen Gorman Ezel and Katie. You may recall that Dr. Gorman Ezell is our Standing Up to POTS counseling expert. She's a licensed independent social worker and professor at Capital University and today she has brought along a student from one of her classes. Katie, thank you both for being with us today.
[00:00:29] Dr. Katie Gorman-Ezell: Thank you for having me on.
[00:00:31] Katie: Thank you so much for having us.
[00:00:33] Jill Brook: So I think everyone will recall that Dr. Gorman Eazell is a clinician and a researcher. She specializes in the area of chronic illness and she's done lots of great episodes with us in the past. But Katie, we haven't had you on as a guest yet. Can you tell us a little bit about yourself?
[00:00:51] Katie: Yeah, of course. So, I am a first year student at Capital University and I am a major in social work. So, that's how Dr. Gorman Ezell and I know each other. I am in her Intro to Social Work class. And I was born with a condition called Goldenheart syndrome. It is definitely not as common as POTS and I definitely have not really met anyone in my day to day life that can relate to me.
But I think this community, although it's not exactly the same, I will feel seen and understood by this community and we can probably share a lot of common ground.
[00:01:25] Jill Brook: Yeah. Do you want to give us a little taste of what it is to live with your syndrome?
[00:01:31] Katie: Yeah, of course. So, Goldenhaar syndrome is something that causes complications on one side of the body. And for me, that's my right side. So, I am missing my right lung, I am deaf in my right ear, and the right side of my face is asymmetrical, I don't have a lot of vision in my right eye. So yeah, the main things of those that have affected me the most in my life are the way my face looks and the fact that I'm missing a lung.
[00:01:58] Jill Brook: Yeah. Wow. Okay. So thank you for being willing to share that with us. And so my understanding is that in this class on social work, you are discussing resilience. Yeah.
[00:02:10] Katie: Yes, we did just discuss this last week.
[00:02:13] Jill Brook: Okay. So Dr. Gorman Ezell, what is resilience exactly?
[00:02:17] Dr. Katie Gorman-Ezell: That is a great question. I think probably the best definition of resilience is the ability of a person, family, group, community, even organization to recover from some type of adversity and resume functioning. We also have to look at how people are able to cope with adversity.
[00:02:40] Jill Brook: So that's interesting. So you kind of mentioned getting back to a baseline level of functioning, if I'm hearing that correctly. Does it also imply that your mood is where it used to be and that you're as mentally healthy as you used to be? Or is it mostly about functioning?
[00:02:56] Dr. Katie Gorman-Ezell: So I think the implications are there for both and I think you hit the nail on the head when you said get back to or overcome. Because I think some situations that can happen, right? That can happen in some financial situations or that may happen in some more temporary types of situations. But I think when we're talking about things like whether it's a marginalized community or whether it is chronic illness, sometimes you can't return to baseline. Or it's a chronic ongoing struggle, so it's not something that's overcome or easily overcome.
[00:03:43] Jill Brook: Okay, so it could look like either getting back to a baseline or maybe finding a new way of being that works for you or...
[00:03:52] Dr. Katie Gorman-Ezell: Yeah, kind of establishing a new normal, but I think one of the things that, you know, Katie brought up when we were in class, and I agree wholeheartedly, especially with my kiddo's history of chronic illness that we've talked about in the past, is that sometimes being told you're resilient doesn't feel like a compliment.
[00:04:13] Jill Brook: so I feel like we have a lot to dig into. This is so interesting. Before we dig into that, would it be okay if I just ask Katie, what does resilience mean to you, or when you learned about it? Can I just ask what you thought about the resilience chapter?
[00:04:28] Katie: Yes, so, when I hear the word resilience, I also think you hit the nail on the head when you said it implies that there's something to be overcome and I think the word resilience implies the existence of something negative. Which is why I agree that it is definitely not a compliment in my case.
I think it can be, like Dr. Gorman is always saying when it is kind of more of a temporary setback like a financial situation or something that, you know, can be overcome and not something that's just kind of like a part of who you are.
[00:05:00] Jill Brook: Right. So, I guess I'm still a little unclear. So, does resilience imply that you get back to where you were before the challenge, or does it just mean that you find a new way to... Kind of live well, even if that has to look very different.
[00:05:20] Dr. Katie Gorman-Ezell: I think it depends on the community in which you're talking about, and I think that's what makes resilience challenging in some ways, is it can't necessarily be a blanket statement, an all or nothing type of thing, because I think, Katie, when we were talking about it in class, one of the things that you shared was sort of that look, and maybe you could share that with the listeners.
[00:05:43] Katie: Yes, absolutely. Whenever you say that look, I see it in my head. It's just a look of pity and to me, this is just me. This is just who I am as a person, and if I was not born with this condition, I just, I wouldn't be myself. So, when I tell people that I only have one lung, it's just a fact, it is what it is.
But I always get the, oh, oh my gosh, you're so strong, and I'm just like, But, like, what else do you want me to do? Do you want me to just grow another one? Like, I don't know what you want from me. So, yeah, the look always makes me angry.
[00:06:25] Jill Brook: No, yeah, because it sounds like maybe the implication is that there's something wrong with you.
[00:06:33] Katie: Yes, yes, absolutely, and I have had to overcome my own beliefs about the way I was born, and I have had to fight my own belief that there was something wrong with me so when I get the look or when I get this so called compliment of resilience or strong or whatever it is, I feel like I have to fight that all over again because there is an implication there of there is something to be overcome when really it it's just me.
[00:07:03] Dr. Katie Gorman-Ezell: Well, and I think we see that a lot in chronic conditions, right? So if we think About the POTS community, one of the things that comes to mind is, first of all, how difficult it is to be believed and to get the diagnosis, and then the diagnosis comes and you're explaining to people, okay, this is what's going on, and then the comment is, Oh, you're so resilient.
How strong of you. And then that implies that you should be able to do things that maybe you're not in a place where you can do because of the chronic illness.
[00:07:38] Jill Brook: So, this is funny because this is way more complex than I was expecting when I was coming to a resilience conversation. Okay, so this is sort of a lot to unpack. Is it okay if we kind of back up a little bit and maybe do like purely resilience 101 and then come back to this stuff about how maybe it has been turned into something that people just say, and where it's hard to figure out kind of what the meaning is, I guess.
So, if we go back to kind of what resilience is, I guess, it sounds like resilience is something that people have when they're able to basically get life back on track after a big challenge.
[00:08:19] Dr. Katie Gorman-Ezell: Yeah, absolutely. I think it's any way that a person can use their strengths internally to cope with adversity, right? And so that adversity can look a lot of different ways. And part of what leads into resiliency are what we call risk factors and protective factors, and that's going to help determine how quote unquote strong you are and how resilient you're able to be.
And so when we talk about risk factors, risk factors are really any situation that can increase the vulnerability of a person. So, whether that socioeconomic status, whether that's access to health care, whether that's chronic conditions, those would all be considered risk factors. And then on the other end, we have what we call protective factors, which really promote the resiliency and protective factors are any factors that can moderate or mitigate and protect against some type of vulnerability. So, protective factors could be things like a strong support team, good health care providers, financial access to what you need. Those would all be considered protective factors, and so there's almost this balance sheet, right, of the risk factors and the protective factors, and based on how that checks out, if you have more protective factors, the idea would be, in many situations, that you would have higher resiliency.
[00:09:57] Jill Brook: Okay. And are these protective factors, typically things that are part of the environment or things that you are born with, or are there also some that you can develop on your own or build or use to try to bring on as protective factors?
[00:10:17] Dr. Katie Gorman-Ezell: Sure, so I think it's actually all of the above. And so I think some of them are definitely environmental, right? Where do you live? Do you have access to good health care? What does that look like? I think some of them are innate, that you're maybe a really strong person, you are a fighter, you tend to have more of a positive mindset.
So there's those types of things, but then you can also enhance that, right? So if somebody historically has struggled with low self esteem, which might serve as a risk factor. Treating that low self esteem, gaining the coping skills necessary, that can then turn into a protective factor.
Absolutely,
[00:11:01] Jill Brook: Okay, interesting. And you know, I know that my husband as a caregiver, he likes to say that he thinks having steady blood sugar is one of his biggest tools because he feels like it makes such a big difference to his ability to cope. I mean, is something like that even part of it?
[00:11:18] Katie: yes, that would be considered a protective factor. So your husband's blood sugar definitely is a protective factor.
[00:11:24] Jill Brook: Because to me that sounds like there might be things that you could do, like strategies for becoming more resilient. Are there like some established ones of those?
[00:11:35] Dr. Katie Gorman-Ezell: I think having a healthy self concept, having a healthy self esteem. I think putting yourself in a situation where you have a strong support network and you have access to the resources you need, all of those things are going to make you more resilient. I think where things then get complicated is just whether or not That resilience is seen as a sign of strength, viewed as a little bit of a character flaw, how it's interpreted by people.
[00:12:06] Jill Brook: So it's almost like we're talking about resilience from two different angles. One is do you have it and does it help you bounce back after challenges or threats or vulnerabilities and the other is how do other people see it.
[00:12:24] Dr. Katie Gorman-Ezell: Absolutely. So to your first point, I kind of think about resiliency like a good analogy is sports. And if you have a football team, for example, that's playing and the offense is down and the coach comes in and gives them a pep talk, kind of gives them a strategy, what they can do to turn things around, even if it's a really tough defense, they can be resilient, rise to the occasion and overcome that difficulty.
And that's resiliency in a really positive, good, healthy way. But I think when we're talking about chronic illnesses, where it gets a little murky, is that we can develop skills that can promote resiliency, but oftentimes, because we can't overcome our chronic illness, what does that mean for resiliency?
And does that then imply that there is some sort of lack of strength? And I think that's where sometimes many people with chronic illness don't feel heard or feel that, that look of pity or talk of pity that Katie was referring to.
[00:13:33] Jill Brook: So I find it helpful to maybe hear more examples of the good kind of resilience. Do either one of you just maybe have a few more that would be relevant in the chronic illness world.
[00:13:45] Dr. Katie Gorman-Ezell: When we're talking about POTS and we're talking about just the grueling process for many people to get a diagnosis, I think that perseverance of continuing to go from specialist to specialist and advocate for yourself, I think that is a great sign of resiliency, right? You're overcoming that situation of not feeling heard, not feeling believed, not feeling listened to, so that would be a really good example of resiliency.
I think when it's really difficult to get out of bed in the morning and to set those boundaries with loved ones or with work that honor the chronic illness, I think that's being resilient. When you're talking with your family and doing what's right for you, I know we've talked about that in the holiday episodes, right, like, sometimes it's not great to go to Thanksgiving and to constantly be asked, how are you feeling? And maybe it's better for you to choose to stay home or just go for a short period of time. I think that's resiliency. I think those are all positive examples of resiliency within the chronic illness community.
[00:14:57] Jill Brook: And then what, what would you say are some, some classic negative examples?
[00:15:03] Dr. Katie Gorman-Ezell: I think some negative examples would be more, you know, if you are at that family gathering and someone says to you, oh, what have you been doing? How's work going? And you say, oh, you know, it's been really tough. I haven't been feeling really well. And then people would pause and say, yeah, that's really hard.
But you're so resilient. You'll get back there. You'll be okay. It almost takes away from that lived experience. And so in that way, sometimes it doesn't feel so positive and it almost feels hurtful.
[00:15:39] Jill Brook: Okay. So having resilience is a good thing. Using the word resilience to maybe minimize somebody else's experience or to be able to say, Ah, you'll be fine. You're resilient is the part that is the negative part. Am I
[00:15:56] Katie: Yeah, I think so, because a lot of times when it happens in those situations, Just like Katie said, it's not a choice. It's not like people choose to have POTS, or people choose to have the Golden syndrome, or people choose to have any number of chronic illnesses, right? It's just something, unfortunately, that they've been dealt and have to deal with.
And so I think it's important to have that distinction that you just described between wanting resiliency, but then also being called resilient in the context in which it takes place.
[00:16:30] Jill Brook: So Katie, do you feel like resilience is something that you strive toward, even though it annoys you when other people call you resilient?
[00:16:39] Katie: Yes I think any individual person can define what resilience looks like for themselves, and that's when I think it can be a positive thing. Like, for me, in the past couple of years, resilience has looked like going to therapy and unpacking All of the negative core beliefs I have. Because of like my school years and everything I've been told and everything I've kind of been taught to feel about myself because I've been taught that it's negative. I've been taught that it's like a hindrance to me so to me resilience in the past couple of years has just looked like fighting that and learning that it's just me.
And I genuinely, I used to kind of say that to myself, that used to be kind of my mantra but I wouldn't really mean it, just like, this is just part of who I am, I wouldn't be who I am if it weren't for this, I used to not believe that, but I think I am in a place where I have accepted that now. Because there's a lot of anger that comes with chronic illness, I think. And at times I think Others that haven't experienced it, I think that's where the resilience comes from, like the compliment of resilience, quote unquote is that they want to erase that anger.
[00:17:51] Dr. Katie Gorman-Ezell: I think you're exactly right. Two things can be true at once, right? You can feel angry and you can take that as a compliment, you know, so I think allowing those two things to be true at the same time and to hold on to those things.
Yes,
[00:18:06] Jill Brook: So it sounds like maybe we have two really practical questions that would make sense. And one you've kind of already addressed, but I'd love to hear from both of you if you have any other practical tips for people to Increase their own resilience, especially when it comes to living with chronic illness or any part of life.
I mean, I guess even if you're not more resilient in terms of your chronic illness, if you can be more resilient in terms of your career or your relationship or something else, I mean, it be nice to have more in any area of life. But then my second question is if there's any practical tips for how to respond to people who say, oh, you're so resilient, because it sounds like that comes up often enough that it would be good to have some ideas of how to help people deal with that too, if they're encountering the same thing as you are, Katie.
[00:19:00] Dr. Katie Gorman-Ezell: I can respond to the first question and then maybe Katie, you want to respond to the second one in regards to your question about practical strategies to increase resilience, I would say, advocating for yourself is really important and whether that's with family, whether that's with friends, whether that's with physicians or care teams, that advocacy goes a really long way in developing resilience.
I think Not only advocating, but setting boundaries. And knowing what you need and being able to be comfortable with that, I think that helps with resiliency. I think getting a solid care team as well as emotional support team in place can be really helpful. And I think also knowing when you need help or to go to therapy is actually a way to build resilience and can be extremely helpful.
[00:19:57] Jill Brook: Okay, fantastic. I know that in the nutrition world a long time ago, I haven't seen data on this recently, but they used to talk about how any little tiny step in a positive direction is worth a lot, because then it makes the next step easier. And so the example was always like, even if somebody can just.
start taking a multivitamin once a day that'll make them more likely to do the next healthy thing which might just be like drinking a little more water and eventually like you know you kind of get on a roll and you build up momentum and I wonder if there's anything like that In the resilience world also. I know that when I have been kind of at my worst in terms of chronic illness, sometimes everything feels so hard, right?
And so even just saying advocate for yourself. Well, okay, but I'm kind of tired today. So maybe if I could just write that one email, that would be enough and just kind of, take baby steps and gradually turn it into a habit. I guess that's what goes through my mind when I think about trying to enact any strategies when feeling at your worst with a chronic illness. So does that all apply?
[00:21:09] Katie: And I think, you know It can be as simple as getting out of bed. Right? Some days it's hard just to get out of bed or to eat something or to take a shower and just being able to do a task of daily living can be a form of resiliency. I think you've got to be able to meet yourself and your illness where you're at. And I think for everybody that's going to look very different depending on the day or the hour. And so I think knowing that and just taking whatever step it may be to make yourself feel a little bit better or to reach some type of a small goal is going to build that resiliency.
[00:21:52] Jill Brook: Yeah. And actually one thing about being a little older, I've learned, is If you're feeling like you're flailing and you're just trying stuff and not sure you're going in the right direction, at least you can observe yourself and see what's working and what's not. And you can get a little wiser over time.
[00:22:09] Dr. Katie Gorman-Ezell: Absolutely, and you're taking a risk. That's resiliency.
[00:22:13] Jill Brook: Katie, do you have any practical strategies that you have found in your life seem to help you be more resilient?
[00:22:19] Katie: Well, I am learning as much as I am practicing. The boundary setting has always been very difficult for me I tend to push myself to the limit, and I think that's part of because I still have partially that core belief that I am seen as pitiful, I kind of want to fight that at all times, so I'm like, no, I can keep up with everyone else. Usually that means physically, like, walking a little more than I should, or going out when it's a little too hot for me to be out. And in the last couple of years, I've had to fight that more than I wanted to. Like maybe we shouldn't go to that restaurant, I don't know if I can walk that far, and I used to feel a lot of shame in saying that, like, because it made me feel weak and pitiful but I'm learning that what I need is what I need and I shouldn't be willing to sacrifice my own well being to keep up with other more able bodied people, I guess. So yeah, like I said, I am learning. I'm learning every day still. It's still a long way to go from here for me. I'm learning everything that I've been told my whole life. But the boundary setting piece is huge for me.
[00:23:35] Jill Brook: Yeah. So, okay. So back to that second question, over time, have you developed any strategies for either what you say or how you just think to yourself when somebody kind of uses that resilience phrase at you to kind of minimize your experience?
[00:23:54] Katie: Any time where I enter a stage of my life where I'm a lot of new people, I get that A lots. Like it used to be in elementary school because kids at that age don't really have much of a filter, so I used to just get the questions like, why do you breathe so loud? Or what's wrong with your face? I don't get that anymore. But I used to get that and that used to just like stop me in my tracks.
I didn't know what to say to those people because even then I was like, I don't owe you an explanation. Why are you just asking me this? I'm just trying to like eat my fruit snacks. What are you talking about? I would get that from a very, very young age, and I used to just accept it as a compliment at the time, because I know that's how they meant it, and I was just like, thanks, I didn't realize the other implications behind that word but as I've grown up, and as I've heard that more my way of kind of, not combating it, but like my response to it, is just like, Well, I don't know another way of living.
I have said that to people. I acknowledge where they're coming from. I acknowledge their intentions and that they mean it. They're coming from a place of kindness. So I will still say thank you, but I will still also make sure to include in that that maybe you see me that way because you haven't lived as me, so you see it as something negative that I have to fight through, but for me, it's just Me. I've never known another way so I think that implies that there is something negative there that I am actively fighting through when in reality this is just like always going to be who I am. There's nothing to really overcome there, it just is.
[00:25:30] Jill Brook: Yeah. And I wonder how much thought really goes into people saying something like that. I'd be curious what you think, Dr. Gorman Ezell, because sometimes I wonder if people sort of, they don't know what they want to say in that situation and they just know that they want to be friendly or positive or something.
So the first thing that comes out of their mouth is, you know, Oh, you're so resilient, but have they really thought about it? Do they really mean that? I wonder if it's sometimes just a thoughtless comment that comes out, or do you think that there's
[00:26:01] Dr. Katie Gorman-Ezell: Yeah, no, I think, I think a lot of times it's like a platitude or just something they don't know what to say. It's sort of like when you're walking somewhere and someone says, Hi, how are you? Most people don't really want to stop and hear how you are. They just want to say good and keep on going, right?
And I think it's a similar situation. I think when people get confronted with something that they're not expecting or that they feel awkward and they don't know exactly what to do, they kind of scramble for words and then think about something that could come off as positive and then want to get out of that conversation as fast as they can.
And I think sometimes that's where that, oh, wow, you're so resilient! Anyways good talking to you, right? I think sometimes that can happen, and so I think it's also letting people know and educating them that like, yeah, this can be a strength. Sometimes there's aspects of chronic illnesses that can serve as a strength, and then there's other times that they absolutely can be risk factors, right?
But that it doesn't necessarily define the person like we've talked about in terms of identity and things like that.
[00:27:08] Jill Brook: Yeah, I have so many interesting thoughts on this. I feel like this was a way more complex issue than I was expecting, but I'm thinking about like some of the things that I have maybe had to do because of chronic illness. So for example, rebuild a career that fell apart because of POTS, but then figuring out how to make it something that I could do from home in any position, and there's some of the things like that where like, I'm kind of proud of that. And I feel like it was resilient. And so if somebody told me I was resilient, I'd be like, yeah, damn right. It was. I'm proud of it. And so I think it's all like super Nuanced. There's so many different contexts.
And I feel like it's interesting, like, there's some things that I would want to feel proud of in terms of resilience, but then I also completely understand the other side of getting called resilient, If it's kind of just a way to say, oh, you have a major, you know, thing in your life, and I'm gonna just sort of remind you that that's there.
But it's all a very kind of complex little situation. Huh?
[00:28:17] Katie: It is, and I think it's very contextual, right? And so it also, I think, depends on who the person is saying it to you. So is it someone who knows what you've been through and has supported you and is really proud of you and sees it as a strength? Or is it someone who's more of like an acquaintance and doesn't really understand?
And so I think who it is and the context really are going to be what dictates how someone interprets the conversation in the comment.
[00:28:46] Jill Brook: Got it. Well, this is so interesting. I have definitely learned a lot. Is there anything else we should say about resilience today?
[00:28:55] Dr. Katie Gorman-Ezell: I think I would just say and encourage everyone to keep trying to build their own sense of resiliency and their own definition of what that means. And however you do that, whether it's getting out of bed, or whether it's finding a career that aligns with your chronic illness, or whether it's Setting boundaries, anything is fine.
We just want to keep finding a way to move forward and feel better.
[00:29:25] Katie: Yes, that was perfectly said. I am a huge believer in small victories and celebrating even the smallest task that you can complete in a day that may have felt impossible even if it is just getting out of bed or making yourself eat something is still a victory Because that's where you're at and that's what was a challenge for you. So individual resilience I think can be a very powerful thing and I think we should acknowledge and celebrate that more.
[00:29:57] Jill Brook: Yeah, you know, I always hear my dad's voice saying, just do the best you can with what you have to work with. And he said that so many times in my life, but I never needed it more than when I was dealing with chronic illness. Well, Dr. Gorman Ezell, Katie, that's so much great information. Thank you so much for taking the time to speak with us today and to share all of your wisdom and experience.
[00:30:21] Dr. Katie Gorman-Ezell: Thanks for having us.
[00:30:22] Katie: Thank you so much.
[00:30:24] Jill Brook: Okay listeners, that's all for today, but we'll be back again next week. Until then, thank you for listening. Remember you're not alone, and please join us again soon.
