Romance and Relationships in Chronic Illness 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 romantic relationships when chronic illness is a factor with our Standing Up to POTS counseling expert Dr. Kathleen Gorman-Ezell. She is a licensed, independent social worker and also an assistant professor at Ohio Dominican University where she researches the interaction between chronic illness and mental health.
You've heard her speak with us before about medical gaslighting, unwanted life changes, and so much more, so you probably already know she's very knowledgeable in this space. We love talking to her. Dr. Gorman-Ezell, thank you so much for speaking with us today.
[00:00:44] Dr. Katie Gorman-Ezell: Oh, thank you so much for having me. It's wonderful to be back.
[00:00:47] Jill Brook: So it seems like relationships in romance are difficult for everyone a lot of the time, and I'm just saying that because of how many marriage counselors there seem to be in the world and how high the divorce rate is. So is it fair to say that relationships in romance are very tricky even before you add in stress of chronic illness to the mix? I'm wondering if you can just kind of talk about baseline challenges that are normal in all relationships, even when there is no chronic illness.
[00:01:21] Dr. Katie Gorman-Ezell: Absolutely. Relationships, no matter how we define them, are challenging. And difficulties are always going to arise. And I think that there are some just general difficulties that happen in relationships, especially for folks who are living together, right? And whether that's living together by choice, by marriage, whatever reason.
When you put two people in the same household, all of a sudden there's some type of unwritten sense of competition or inequity. And invariably, when we all experience stress, which we all do, then that seems to be heightened and the tension sort of arises before it erupts. Right? And some of that tension rising can be from a whole slew of different things, whether it's whose turn it is to take out the trash, whether it's keeping up with the laundry, the dishes, the finances, making sure both partners are able to get to work on time. If there's children involved, getting children to their activities, to school, to making sure homework is done, to having time to nourish the relationship you have with your partner, let alone have that time for self care.
So right then and there, when we think about all of these different factors, We can see where all of the stress is coming from and why we're oftentimes just one step away from an explosion.
[00:02:50] Jill Brook: So you've said a couple of really interesting words there. I think you said inequity and competition, and do you mind just talking a little bit more about those?
[00:03:04] Dr. Katie Gorman-Ezell: Sure, absolutely. I think sometimes what happens in a relationship is we expect there to be equality and to really understand equality. I think we have to understand justice and equity. And so when we're talking about equality, it's the idea that we all should have access to the same thing. And so I like to think about it when I teach my students, and I'm giving an example, I like to think about it in terms of maybe somebody who's going to the baseball field to watch a game.
And so equality would be that everybody can stand behind the fence and see the game. The difference is some people are shorter, some people are taller, and some people may have access to a step ladder.
Each of those different things that people come to the ballpark with, their heights, their step ladder or whatever else that then becomes an issue of justice. And justice is when we give everyone equal access in the same exact way. Whereas equity is actually when people get what they need. And so sometimes when we're in a relationship, we're so focused on everything being equal, that we forget that each person has different needs and that particular day may have different levels of stress.
And so there's days in relationships sometimes where people can only give 20% and the other partner's giving 80%. And then there's other days where it is more 50 50 and there's some days where it's 99% versus 1%. And what's important is that over time, each person is giving what they're capable of giving and communicating with their partner to ensure that their partner's needs are being met. So I think that's what I would talk about in terms of equity versus inequity.
And so I think oftentimes when there is a sense of inequity, then people sort of start keeping tab of what's happening and who has done what. And as that little list starts small and kind of snowballs into a bigger and bigger list. That's when tensions really rise.
And I think those explosions occur because people start to notice, Hey, I've done all of this. You've only done that, and start to feel angry. And that anger is usually partnering with another emotion. And that partner might be resentment, it might be fear that the person's going to leave. It might be sadness because it triggers something from a previous relationship with them. All of those different emotions stack up and partner with that anger and bring about that resentment based on the competition.
[00:06:02] Jill Brook: Interesting. Okay. And once you throw in some complex chronic illness like POTS, how does that affect all of this and what new challenges arise?
[00:06:14] Dr. Katie Gorman-Ezell: Absolutely. I think first and foremost, it's important to really focus in on a couple's communication. And so one of the things that I talk a lot about is looking at the five love Languages quiz, which you can go online and take for free. In fact, we'll try and include a link to that with the podcast.
But I think it's really important to know what you need in a relationship and how you need that communicated to you. For some people, it's what we would call acts of service. So some people feel love by having a partner who shows them love by unloading the dishwasher, perhaps bringing 'em chicken noodle soup when they're not feeling well.
Right? For some people it is quality time, and so that means it's not as important what you're doing with your partner is just that you are spending that time together. For some people, it is physical touch and it's having that physical intimacy. Not always sex, sometimes sex, but just that physical closeness.
For some people it can be giving and receiving gifts is a way that you show love. And so that person, whether it's giving someone a card, whether it is giving someone a necklace or a new hoodie, right? Whatever it may be, that's how some people feel and receive love. Where we tend to have problems though, is when the way one partner receives love isn't the way that their partner gives love. If that makes sense.
[00:08:02] Jill Brook: Gosh, is so interesting. I've never heard of this before.
[00:08:06] Dr. Katie Gorman-Ezell: okay. Well it is really interesting and so important, and so for me personally, I am an acts of service person. That to me, is a really important way of showing love. And so for me, when my husband is helping unload the dishwasher, getting my kids to all their different activities or cooking dinner. To me, that really feels like I'm being loved. For him, he is more of a physical touch person, so for me to show him love, I need to engage with him in physical touch as opposed to maybe what my natural response would want to be, which is acts of service since that's what I'm used to.
And early on in relationships, that can be a challenge if you don't have the conversation and don't understand how you need to be loved and what your partner needs to feel loved.
[00:09:01] Jill Brook: Wow, that is fascinating. And then I can also see where if somebody suddenly develops POTS, it might be tougher for them to do some of these different things. Like if you have POTS now and it's severe, maybe all of a sudden emptying the dishwasher and doing all of those acts of service could get a lot tougher.
So that is fascinating. Can you say it one more time? You said that there's a quiz you can take. Is this something that you and your partner both do?
[00:09:27] Dr. Katie Gorman-Ezell: Yes, it's the five love languages quiz, and you can take it online (https://5lovelanguages.com/) and it will show kind of where you fall, and then your partner can see where they fall, and then you can kind of have that as a springboard for a conversation to see how you can support one another in feeling loved. Because a lot of times that's where our frustrations and our arguments tend to come from.
In fact, most couples, And most married couples tend to have the same fight over and over without resolving it. And those fights or arguments or disagreements, whatever we want to call them, those tend to, generally speaking, focus on finances, focus on family and in-laws, and then also focus on parenting disagreements and lack of physical intimacy. Those tend to be the four things that most couples tend to disagree on the most, and a lot of those come from our family of origin and how we have been raised and what we've learned and what we've watched in our families. Sometimes healthy, sometimes unhealthy.
And so it's so critical that we have these conversations so that we can have a better understanding of our partner. And decrease the likelihood for those tensions to begin mounting.
[00:10:50] Jill Brook: Right, and I can see how by taking that quiz, you could each work smarter instead of harder, because each person might think that they're doing a lot, you know, Hey, I'm showing you love so much. But if it's not in the language that that person is able to take in, a lot of it might be lost on them.
[00:11:09] Dr. Katie Gorman-Ezell: Exactly. It gets lost in translation. And just like you said, once that chronic illness component enters in, It adds a whole nother layer and dynamic because sometimes what can happen is that just like you said, if someone is used to the acts of service and then their POTS is diagnosed and is fairly severe, they may not be able to do that same thing.
And so I think at that point it's really important to sit down with your partner and acknowledge the reality of the loss that's happening in the relationship, which is I really want to love you how you want and need to be loved, and it's still really important to me. I'm just not able to unload the dishwasher anymore.
Are there maybe other things that I could do or take off of your plate that would be helpful to you and show you that I care about you and that I love you, but that may not be so physically taxing on my body. And so opening up that conversation to see what that may look like. Maybe it's returning a couple phone calls while lying down, right?
Instead of unloading the dishwasher, it could be a whole variety of different things, but what's so important is that you have that conversation with your partner to ensure that you're on the same page.
[00:12:32] Jill Brook: Right now, you mentioned these four topics that tend to be the sources of conflict, and I think you said it was finances, parenting, family, or maybe in-laws, and then physical intimacy. Is that correct?
[00:12:49] Dr. Katie Gorman-Ezell: that's correct.
[00:12:50] Jill Brook: And so do you hear from a lot of people that their chronic illness affects those things? Because I guess what's going through my head is, gosh, we all know that chronic illness is expensive and it makes it harder to work and earn money. It of course, affects your energy and ability to parent. We know that with family, oftentimes there's gaslighting.
There's a lot of beautiful, wonderful intentions, but there's also a lot of friction that comes when people don't understand your complex chronic illness. And I think we're going to save the intimacy and sex talk for another episode. But I am aware of some research that's going on in that department, and that's also finding that that might be an issue in chronic illness.
So what's going through my head is, oh no, that makes all four hard.
[00:13:40] Dr. Katie Gorman-Ezell: right. Absolutely it does. Because these are just for people without chronic illness. Right. And then as you've pointed out, we add in that chronic illness, and it's a whole additional layer of stress. The good news is, Like anything, if we work at it, we can overcome it. And I think that is where communication becomes so important and so critical for both partners, because we don't want to let any of that frustration turn into resentment to turn into an explosion.
[00:14:14] Jill Brook: So before we dig deeper on strategies to help, do you think it makes a difference or have you seen a difference in your clients? Between when a person and a partner met before versus after the chronic illness showed up.
[00:14:32] Dr. Katie Gorman-Ezell: I have to be honest, I don't know that I have seen a whole lot of difference. I think when the chronic illness has hit once the partners, you know, are a few years into the relationship. I think for the most part it's a learning experience and a learning curve together, but it just couples with all of the other perhaps difficulties that have been there and have been brewing for a while.
I think at other times, when people meet with the chronic illness, they've sort of adapted to it, and they're going to go through some of the similar struggles that we just see across the board in relationships, which are disagreements related to lack of communication, and those four major topics that we've talked about.
So, chronic illness or not, there's going to be tension in relationships and communication is key.
[00:15:28] Jill Brook: And one last question on the same lines. Is it pretty similar if the chronic illness is in the child of the couple versus in one of the members of the couple?
[00:15:41] Dr. Katie Gorman-Ezell: No, actually it's not. And what ends up happening when it affects a child is that either one of two things happens. Either the couple will grow together much closer because they're bonding over a negative traumatic event, which may not always be the healthiest, in the event that the child eventually leaves the home and lives independently then the parents may not really know who they are as a couple anymore and may have lost their relationship.
The other thing that can happen is the chronic illness can become sort of a trigger and a source of disagreement in terms of parenting strategies. So for example, one parent may feel like, boy, we really need to push the child. We really need to not let the illness identify them as a person and change who they are.
And the other parent may feel like, well, you know what? I really think we need to back off. I think we need to give them some space. And so that can create a lot of discord between the parents and sometimes results in arguing and fighting.
[00:16:45] Jill Brook: Oh my God, there's so many minefields.
[00:16:48] Dr. Katie Gorman-Ezell: There are, there are. It is a very slippery slope.
[00:16:52] Jill Brook: Okay, so let's start talking about strategies or things that you've seen that can be helpful in any of these situations. I know you mentioned communication. What does it mean to you to be good at communication?
[00:17:07] Dr. Katie Gorman-Ezell: So I think communication really means just having an open dialogue. It doesn't have to mean agreeing, right? In fact, couples, people, humans, We are going to disagree. We are going to fight, but what's important is that we're fighting fairly. And what I mean by that is whenever I'm working with a couple, one of the first things that I like to do is I like to set up ground rules of how we're going to fight.
I know these fights are going to happen, so let's set up some parameters in terms of what is acceptable behavior in an argument and what is unacceptable behavior in an argument. So that everyone can feel safe in the process. And so that may sound a little bit funny, but in practicality, what that looks like is saying, you know what, we're both going to agree not to scream at each other.
We're both going to agree not to call one another names. We're both going to agree not to be physical at all, right? So we're setting up these different ground rules, based on our own experiences with arguments over the years. And so from our family of origin, depending on how healthy or unhealthy it was, how traumatic or wonderful it was, right?
We're going to try and bring in some of those ground rules to ensure that we both feel safe. We're going to set a timer and if we both need to take a break, we agree to a five minute break. We set the egg timer for five minutes. Take time to cool off, return to the argument, whatever it may be for that particular couple.
I work to empower them to set those boundaries so that it can be a safe environment when the disagreements do arise. The other thing is in today's society, we are so accustomed to using the word mad and angry, and that's almost much more socially acceptable than it is to say, I feel sad, or I feel hurt. And so oftentimes anger has a partner emotion, and it's really important to figure out, okay, I'm feeling mad, but once I take off that layer of anger, kind of like peeling back an onion, what is that other feeling that I'm experiencing?
And why is this making me so angry? Why is this striking such a nerve? Is it because I'm feeling insecure? Is it because I'm feeling not wanted or not loved? Is it because I feel like my opinion doesn't matter? And once we can get to the root of where some of those feelings are coming from, that's when the real healing begins. That's when the real forward progress happens.
[00:19:55] Jill Brook: Wow. Okay. So that's the communication aspect. Actually, I have one question. You always hear people say, don't go to bed mad. What do you think about that?
[00:20:07] Dr. Katie Gorman-Ezell: So I'm a big fan of that. I think it's okay if you want to go to bed angry, but I think you have to understand why you're angry and you have to make a commitment to talk through it and try to resolve it within a standard period of time of at least like 24 hours. Because the longer we hold on to that anger and that resentment, the hotter it burns within us and usually ends up causing more distance than actually bringing us together.
[00:20:39] Jill Brook: So it almost sounds like there could be like good times and bad times to even start this conversation, like 10 o'clock at night sounds like a bad time. If you hope to go to bed, not angry. Maybe it's more something to save for a weekend and start it early.
[00:20:53] Dr. Katie Gorman-Ezell: yes and no. So what I would say is as you would want to say to your partner, you know what I'm feeling really angry right now. I don't think this is a good time for us to have this conversation because I'm not sure it's going to be productive. Would it be okay? Can we table it till you know, tomorrow at two o'clock and revisit it then after We both have had a good night's sleep, so you may go to bed feeling a little bit mad or angry, but as long as there's a plan for resolution, I think that's what's important.
[00:21:25] Jill Brook: Okay, great. Do you have any other advice for people in relationships?
[00:21:30] Dr. Katie Gorman-Ezell: Absolutely. Outside of communication, I think it's also really important just to find things that you can do with your partner to enjoy one another's company and to have fun together and to not forget you know why you're attracted to them in the first place. And so whether that is having a special TV show that you enjoy watching together, if you each like listening to a certain podcast and discussing that podcast if you like cooking, making sure that you have dinner together.
I have a set of friends who one of their favorite things to do is to pick a country or a city for date night. And what they do is they will cook a meal or pick up take out from that particular type of city. So for example, if they really are into Italy in the moment, they might get a special Italian dinner and have that to eat and then watch a movie together that has to do with Italy or it takes place there.
And so they can almost feel like they're going on a date and traveling and doing something fun together. And they've made it a goal to try and do one each weekend. So to visit 52 places over the course of the year without ever leaving their home. And so I think there's, yeah, I think there's things like that that's just really important for people to be able to do, to nurture that passion and that love and that care for one another, and to also take the focus off some of these difficult things like a chronic illness or like maybe some of the financial woes or all of those different types of things.
[00:23:12] Jill Brook: Yeah, and that's why I was thinking about the difference between whether the chronic illness strikes before the couple meets and falls in love or after, because if it strikes after, that means that that foundation that you had, all those things that you enjoyed doing together, a lot of them may not be possible anymore.
And so now you have to come up with a whole new set of those things. But I know that in chronic illness, everybody kind of always gives you the advice of focus on what you can do and find new things that you can do. And it seems to me that as a couple, you need to have that same orientation and maybe be creative and maybe do some trial and error, but hopefully come up with the biggest possible set of activities that you really enjoy doing together, even if you have lost a lot of your old favorite ones.
[00:24:06] Dr. Katie Gorman-Ezell: Absolutely. And sometimes too, I think it's hard just to even decide what you feel like doing, right? And I think that's hard for everyone. So another suggestion that I have for couples is to maybe make a list of things that you do enjoy doing together and put 'em on a piece of paper and then cut them up.
And then each weekend when you're going to try and have a date night, just randomly draw out of a hat. So it kind of is a little bit spontaneous, but it's also something fun. And obviously there's veto power, so if you're not feeling well and don't feel up to it, that's totally okay. But hopefully it's something that you and your partner can do together and enjoy that time.
[00:24:43] Jill Brook: I have to share one that I just came across recently and you know, I was feeling bad. My husband's 50th birthday is coming up and we used to travel so much and we used to, you know, do dancing lessons and like all these things that are like, Stereotypically romantic that are difficult for me to do now, or I don't enjoy 'em as much.
And so having these big occasions is a ton of pressure and stress and, oh no, I'm going to be boring instead of, I'm sure that, you know, 20 years ago pre POTS, we would've been doing something that felt kind of exciting or exotic, but I was so excited to find there's all these cool resources online for escape rooms that you can make at home.
So, shh, nobody tell him, but I'm planning a big grant escape room, but at our house...
[00:25:32] Dr. Katie Gorman-Ezell: Oh, how cool.
[00:25:34] Jill Brook: work on it on my own time at home. I can take months to do it if I want, and make it really elaborate and really fun. And there's a lot of cool free resources online and it just costs a few dollars. but I was so delighted to discover that because it was just sort of like a reminder that there's a lot of neat stuff out there in the world that if you just go looking for, you can find.
[00:25:57] Dr. Katie Gorman-Ezell: Absolutely and think how special that will be for him because you're taking the time to do that for him as opposed to, you know, having a big party. Not that there's anything wrong with having a big party, but how meaningful for him that you are showing your love to him that way.
[00:26:13] Jill Brook: Yeah. Yeah. But I sure fretted about it for a long time before I found that.
[00:26:19] Dr. Katie Gorman-Ezell: Absolutely. Absolutely it is. It can become incredibly overwhelming.
[00:26:23] Jill Brook: Yeah. Okay. What else? What, what do you see in the couples who thrive even after chronic illness strikes? Is there anything you notice about what they do differently?
[00:26:34] Dr. Katie Gorman-Ezell: I would say the two things are communication and I just can't stress that enough. And I think having a sense of humor. I think a lot of times couples who find something that they can joke about and make light of. Not generally speaking to chronic illness, but some way to incorporate a little bit of humor can really, really help.
[00:26:56] Jill Brook: Amen to that. Yeah. Okay, so. Next question is about that classic stereotypical romance, right? Like keeping the romance alive when one person is in chronic pain or chronically fatigued, or the other might have added work as a caregiver. I guess I have a few questions around this classical idea of romance, like, first of all, is it even a priority at that point, or does it matter?
I mean, if you're laughing and having fun with other ways, you know, other things that you do together, is romance always important or do you have any other thoughts or tips on that?
[00:27:41] Dr. Katie Gorman-Ezell: I think it's all dependent upon your partner and what they need, and so that's why it's so important to have that conversation and to check in and say, You know what? I've felt really distant lately because we haven't been able to be physically intimate or, you know, I have felt really sad lately because you've been so exhausted and I just want to spend time with you and I know I need to let you sleep.
I think just bringing that into the light and having conversations directly about it is so empowering and can actually bring the couple closer.
[00:28:14] Jill Brook: That's great because I feel like sometimes there's all of these social norms about how you're supposed to be as a couple, and I just know that the more I ignore all those norms, the happier I am.
[00:28:26] Dr. Katie Gorman-Ezell: Absolutely. Absolutely. I've even worked with couples who have like un Valentine's days, right? They don't like the hallmark nature of the holiday, and so they'll just pick some random day and go out and get dressed up and celebrate because they can just as sort of I'm not adhering to these cultural norms.
[00:28:44] Jill Brook: Oh, right on. Yeah. I just feel like, just as with everything else in the chronic illness world, at least in the POTS world, like you have to find what works for you. And it might go against everything that is written down about what is supposed to be good or fun or right, and I feel like it just always takes me too long to get to that place where I do, or my husband and I do what's good for us instead of what the social norms suggest we ought to be doing.
[00:29:15] Dr. Katie Gorman-Ezell: Absolutely. That's the key is you have to create your own norms and figure out what's right for you.
[00:29:21] Jill Brook: Great. So is there anything else about relationships or romance and the intersection with chronic illness that you feel like we should be talking about today?
[00:29:35] Dr. Katie Gorman-Ezell: I think the important thing to remember is that no relationship is like what the Hallmark Channel movies present. And that there is no one size fits all, and that it's okay to not fall within the stereotypical norms. What's important is that you communicate with your partner, you find a way to get your needs met and ensure that they're getting their needs met too.
[00:30:01] Jill Brook: Beautiful. Well, Dr. Gorman-Ezell, that's a lot of great information. Thank you so much for taking the time to speak with us and to share your wisdom. We so appreciate all the volunteer work that you do for Standing Up to POTS all year long. And is it okay if we invite listeners to continue writing in their requests for topics that we can ask you?
[00:30:22] Dr. Katie Gorman-Ezell: Absolutely I would love that.
[00:30:24] Jill Brook: Okay, listeners, if you have a topic you want to hear about from Dr. Gorman-Ezell you can write to us at
[email protected]. That's all for today, but we'll be back again next week. Until then, thank you for listening. Remember that you're not alone, and please join us again soon.
