Episode Transcript
Jill Brook: [00:00:00] Hello, fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your holiday dreading host today, and we have an episode of the POTS Practitioners where we are going to discuss holiday stress, challenges, opportunities, and strategies with Dr. Gorman-Ezell. You may recall that Dr. Gorman-Ezell is our go-to mental health expert. 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. She earned her many degrees from Wittenberg University, the University of Michigan, and then the Ohio State University.
And she is one of several board members of Standing Up to POTS who helps conduct research on POTS and publish papers on POTS. Plus, she is so full of practical ideas. I just love getting to speak to her. Dr. Gorman-Ezell, thank you so much for joining us today. Happy [00:01:00] almost holidays.
Dr. Kathleen Gorman-Ezell: Thank you so much for having me, and happy almost holidays to you as well.
Jill Brook: So the holidays are supposed to feel joyous, fun, full of cheer merriment. 100%. That feels like the expectation anyways, but even for many people without chronic illness, holidays are found to be kind of stressful. Right? Can you talk about.
Dr. Kathleen Gorman-Ezell: Absolutely. I think holidays are stressful for everyone. And then you add in that chronic illness component and it becomes even more stressful.
And one of my favorite phrases when we're talking about holidays or all these things we should be doing is to not should on yourself. And the reason I say that is, because oftentimes our expectations are unrealistic. Our expectations are rooted in tradition or nostalgia or all these things that should be happening rather [00:02:00] than the reality of what actually is happening.
Very rarely do we have a Hallmark focused holiday, right? That goes perfectly just as planned in the movies or on the Hallmark channel, right? That's where a lot of us go to watch some of those holiday films, and the reality is, It's unrealistic.
Jill Brook: So that is a really, really good point. And you know, I think about all the POTS patients out there and all the different things that might make them unable to do those shoulds, whether it's they can't stand up for very long to bake the cookies or do the decorations, or they can't eat normally or partake of the alcohol or they just don't have the energy to do all the parties, or maybe the traveling is just so difficult or the financial strain of having a chronic illness can make the holidays that much tighter and difficult. Or maybe they have Mast Cell Activation Syndrome, and so they're [00:03:00] having difficulty tolerating all the holiday fragrances or lights or sounds You know, my struggle, my personal one is I have a hard time sitting because I have some circulatory problems and I'm allergic to the mechanical pressure.
So I guess my mind is just like exploding with all the different things that could make a POTS patient have difficulty doing the expected normal hallmark holiday activities. I know that you've said before, we shouldn't should on ourselves, and I love that so much and I've tried to embrace it, but when it comes to holidays, there's like this extra dimension of feeling that your friends and family have expectations too.
And at least I feel like if I don't help make their Hallmark card fantasy happen, then I'm letting them down. Do you have any thoughts about [00:04:00] how your own expectations interact with other people's expectations for the holidays?
Dr. Kathleen Gorman-Ezell: Absolutely. I think we all at the core, wanna try and please other people. But what ends up happening is the more that we try to please other people, the more unhappy we feel ourselves.
And so that's where I think it's so important for us to set boundaries for ourselves that will allow us to stay healthy. Because at the end of the day, if we're not healthy, we're not gonna be present with our friends and family. And so it's so important to focus on how we can take care of ourselves because until we take care of ourself, we can't take care of others or be there for them.
Jill Brook: Man, that feels so important and I feel like we almost need you to say that again because it's so important, I'm getting older and I've spent a lot of holidays trying to kind of just fake my way through them to make other people happy, and it has definitely not worked out great, [00:05:00] and so can you just maybe say that again for all of us to help it sink in.
Dr. Kathleen Gorman-Ezell: Sure. I think we need to set boundaries to take care of ourselves because until we take care of ourselves, we can't be present emotionally or physically for anybody else. And so finding out what we need and knowing what we need is probably the most important thing.
And so I would actually encourage everybody to make a list right now before we're in all of the chaos of the holiday season of what it is you need from the holidays. What do you want? What do you actually need? And that list of needs needs to be then what we call our non-negotiables, where we're not willing to deviate from those.
We need to have those as our guidelines at the very least of what we're going to do to take care of ourselves. And so whether that means. You know, finances are tight, so we aren't going to be buying Christmas or [00:06:00] Hanukkah or Kwanza gifts for anybody. Whether that means we have to eat something different than everybody else, then that's what we need to do.
If we need to only attend a party virtually, then that's what we need to do. I think it's important for us to take care of ourselves, and I think in some ways this is an absolutely perfect time to do that because coming off of Covid in the pandemic where holidays have had to be different for a couple of years anyways, this is kind of a fresh start for us and a time where we can kind of come up with new , new traditions and all our memories from the past are a little bit more fuzzy.
Jill Brook: Oh my gosh. I love that. That is so smart. That's a great idea. And I was gonna ask you about FOMO, right? The fear of missing out, and I guess part of what you say is come up with new, better traditions so that you don't feel like you're missing out. But in your world, are there any sort [00:07:00] of general tips or advice for dealing with FOMO.
Dr. Kathleen Gorman-Ezell: Well, I think, we all idealize what's gonna happen and it becomes even more fun and entertaining when we can't be there to actually see what happens, right? And so I think part of it is realizing that if you can enjoy what you're doing, in the present moment, then you're less likely to have the fomo, right?
So if you're in a position where you're not feeling well and you don't think you can make it to the party because there aren't gonna be many chairs and there's gonna be lots of standing, or people are gonna be partaking in a lot of alcohol and you really can't drink and don't wanna be around all the drunk people, right?
I think that's where then you create your own fun at home. So whether that's watching a special movie or enjoying a special meal, or listening to music, or just resting and relaxing to recharge, I think that if you can stay present and enjoy that moment, you're [00:08:00] gonna be less likely to experience the fomo.
Jill Brook: I love that. Okay. Next challenge. Once you come up with your list of wants and needs and non-negotiables, do you have any tips for communicating those to others because I know holidays are sometimes a little bit tricky because you might be expected to gather with people that you do not see very often and so they might not be as familiar with your whole situation.
So for those uncles that you only see twice a year or the work friends that are expecting you to be at the holiday party, I guess I'm just wondering if there's any communication strategies. And along with that, how much do you really need to tell 'em? Is it just I'm not gonna be there, or is it worth it to explain why or do you have any suggestions around that? Because sometimes in life I've found that, [00:09:00] the trickiest part of a situation is just figuring out how to verbalize what I need, and once I have the phrase, then everything gets easier. Mm-hmm. And so I guess I just wondered about your thoughts on communicating your thoughts and needs.
Dr. Kathleen Gorman-Ezell: Sure. So I think one way that can be really good to communicate your needs is actually by writing an email, if possible. And that may sound really funny, but I think it's a lot easier to be very direct and to set really clear boundaries in writing. And it also gives the person who's reading it and opportunity to process what you're saying, to think about it and not just have that instantaneous reaction where they're also missing a lot of what you're saying. And so if you do that and then have to follow that up with a phone call. Expectations have already been set, so you're then just reiterating them. I think another thing, if that's not an option that can be helpful, is if you're at a work party [00:10:00] or at a family gathering.
If you have a close person with you, whether it's a partner, a sibling or a coworker, or a close cousin and that person really gets what's going on with you. Keep them around as your buffer. So when that uncle says something kind of outta character or off putting, not only are you there, but that person's there to kind of help work through the situation and get you out of it. And so I think when possible at some of these gatherings, it's important to have a buffer because so often you are gonna hear really uncomfortable things, right? Like, Oh, what are you doing at work? Well, actually, I haven't been able to work. What do you mean you haven't been able to work? And then that can kind of go down a whole rabbit hole of conversation that you may not be wanting to have. And so having that other person there to help cut that off or change the subject can actually be really helpful and comforting.
Jill Brook: Yeah. That's really smart and that comes [00:11:00] to a question that one of our listeners wrote in who is asking with friends or relatives that you only see once or twice a year, How important is it that they really understand you? Like should you really try to educate them on POTS or whatever your issues are, or should you just work to get through the dinner and not have it be a thing?
Dr. Kathleen Gorman-Ezell: So my recommendation is that if you're only seeing them once or twice a year, chances are what they think of you is not nearly as important as the people you're surrounding yourself with day to day.
And even if you're related by some distant bloodline, it doesn't mean that you have to be exceptionally close to them. So I think in that situation, if they're a person, who's gonna be argumentative or just not very empathetic. It may not even be worth trying to explain to them what's going on and just kind of pushing through, because it may actually take [00:12:00] more mental and emotional energy to have that discussion with them than just a smile and make small talk and move on.
Jill Brook: Okay. A couple more questions from listeners. One is, is it true that the holidays are a time when suicide rates increase?
Dr. Kathleen Gorman-Ezell: Yes, it definitely can be. And I think a lot of it is that people can start to feel really alone during the holidays, especially if they don't have some place to go or someone to share it with. And that can actually increase depression and suicidal ideation. And then ultimately, suicide.
Jill Brook: So it sounds like one strategy is to try to do what you said, get ahead of it, and think of ways that you will be able to be with loved ones in ways that work for you.
Dr. Kathleen Gorman-Ezell: Right. Absolutely. And I think there's just so much pressure around the holidays. You know, one thing I find really [00:13:00] interesting is that a lot of studies have shown that when we go back to our childhood family of origin for the holidays or any other gatherings, we all tend to take on the roles we had as children. Right, which sounds a little bit funny, but if you were the oldest child and maybe a little bit bossy, you tend to kind of fall into that pattern even as an adult, right?
Even if you're 50 years old, that happens when you get back together. And so I think it's also being aware of that. So if you had a sibling who used to tease you and irritate you a lot likely that's gonna happen again. And so I think that's another thing that we can prepare for and know about ahead of time that we all have that tendency to fall back into those childhood roles. And I think it's amplified more so at the holidays because it's a much more concentrated period of time that we're spending with those loved ones within a short period of time.
Jill Brook: Right, and I think [00:14:00] you kind of already addressed this, but another question that came in was, how do I embrace the positives when you know that the holidays are gonna have a lot of extra pain and discomfort from things like traveling, eating at off times, going to bed really late, things like that.
Dr. Kathleen Gorman-Ezell: I think it's really important, again, to set those boundaries and to do what you need to do to be healthy and to feel well. And I think those people around us who really love and care about us are gonna respect that.
Jill Brook: Okay. Another question from a listener. I have a lot of food restrictions. Can you give me any tips for how to explain those to other people without sounding like a nudge.
Dr. Kathleen Gorman-Ezell: Okay. Great question. I think just saying to others, I'm really excited to come to the gathering right now. I've got a lot of food [00:15:00] restrictions, so I'm gonna bring my own food, but I can't wait to celebrate with you and to sit with you. And I think once you say that you're setting that boundary that you're going to be bringing your own food, so that way you know you're going to eat things that your body can tolerate and you're comfortable with, but you're also setting the expectation that the host of the party or the gathering does not have to make something special for you. And I think it actually turns out to be a win-win for both you and for that host or hostess.
Jill Brook: Yeah, that sounds really smart because one funny thing, I think. I hear about a lot is when somebody is going somewhere and the host or the hostess says, Oh, let me cook for you. Oh, I can make it gluten-free. Oh, I can make it dairy-free or whatever. But then they forget, it's not easy going gluten-free. You gotta read a lot of ingredient. There's always some hiding in the soy sauce or something . And so sometimes people end up having the double awkwardness of having [00:16:00] the hostess or host go to all that trouble, but still not getting it a hundred percent correct.
And so the person still pays a price sometimes right. So that sounds like a good solution. Okay, so here's another question that's a little bit similar. If somebody has hyper sensitivities to things that everyone else loves at the holidays, like scented candles, or incense or holiday fragrances again, it feels much easier to just avoid that situation than to show up and then feel really rude when you have to go outside or leave or ask to have the candles put out or whatever. Do you have any ideas there for communication?
Dr. Kathleen Gorman-Ezell: I would say it's similar, you know, to the food situation. I think it's really important to set those expectations up front, because what I do know is when you tell most people, You know what, I really wanna come, but I don't wanna ruin everyone else's time. I just really can't be around those sented candles or the [00:17:00] twinkling of the lights really bothers my eyes. I don't want to ruin that for other people, but I just can't do that. Then that gives the host or hostess an opportunity to say, Oh, you know what, don't worry about it. I will make sure we don't have any candles lit. Or we can dim the lights or whatever they're willing to do or not willing to do. And if they're not willing to do anything, they may say, Oh, I'm really disappointed you're gonna miss out, but you know, we'll plan something else another time. And I think, again, as disappointing as that may be, if that's the response, at least you're going to feel better knowing that you express gratitude for the invitation you wanted to come, but you have to do what you need to do to take care of yourself. Right? It'd be kind of like having a party with lots of alcohol for someone who's a recovering alcoholic. Most people would find that to be sort of rude to have all that alcohol around, so the person would either explain why they're not attending or the host or hostess would say, You know what? Let's not have any alcohol there. Right? It's [00:18:00] something similar. We need to state what we need, and once we do that, most people are very receptive to it.
Jill Brook: And what I hear you saying in your examples is that you pair the statement about your need with a statement about how grateful you are or how excited you are to see them or participate. Is that kind of the formula?
Dr. Kathleen Gorman-Ezell: Absolutely. It's almost like a sandwich, right? We start, the top layer of the bread is the positive comment. Then we have sort of the, the meat, if you will, that is going to be the boundary or the feedback and then we sandwich it with another piece of positive bread.
And when we do that, people tend to take feedback much better.
Jill Brook: Okay. Sandwich. I like that. Okay. We have one more listener who has written in asking about any advice about guilt for not participating as much, especially when there are some relatives for whom it means so much to have everyone gather together and to [00:19:00] make memories and to get that Christmas portrait, for example.
Or maybe like elderly family members for whom it's really important to bring everyone together. And so sometimes one's own needs conflict with what you might perceive to be someone else's needs, and you might love that person very much, and you might want them to be happy and have a perfect holiday. Do you have any thoughts about managing that?
Dr. Kathleen Gorman-Ezell: Sure. I think first and foremost, there is nothing that is perfect. So we always have to remind ourselves of that. And I think the other thing to think about it is if we can't get there for that particular portrait, right? Or we can't get there for that particular gathering, is there a way that we can be present without costing us our health. And so some of that may look like, like we said, could [00:20:00] I get on Zoom? Could I, do a phone call and talk with everyone, get passed around on the phone. You know, if I miss that family portrait, is that possible for me to find out what everyone was wearing and coordinate and take a picture and get photoshopped in?
Right? I think that's one great thing about all of our advances in technology is there's a lot of different ways we can do that. And for many people, even though it seems like it's about the party or the celebration, it's really about the time that they spend. So maybe you give 'em a rain check, so you know what, Hey, I'm really not feeling up to it today, but when I feel better, I'm gonna give you a call and let's find a time to get together for lunch.
And I wanna hear all about how that holiday was for you and what's been going on with you. Because one thing we know is that oftentimes people like to talk about themselves, and so if people feel important and like you're really invested and you really care, That oftentimes is all that they need to feel comfort and to feel [00:21:00] love and, and I would say kind of going off of that on a little bit of a tangent is that's something else you can do at some of those uncomfortable dinners or parties is start asking people questions about themselves, turn that away from you and onto them, and that kind of gets you off the hook because you can listen enough to respond appropriately and to ask more questions, but you can also take that mental space for yourself and get that time to have a breath.
Jill Brook: Smart. I love that. And one listener also wrote in what I thought was a smart idea. She said that in her family, they used to get really dressed up for Christmas Eve and look nice, do the hair, do the makeup, take the photo.
And that became too exhausting for her with POTS. And so now her family, they all get the matching pajamas and they do it wonderful in pajama.
Dr. Kathleen Gorman-Ezell: That's a great way to shift those traditions, right? And I think, like I said before, because of covid, now is a great time to do that.
So [00:22:00] maybe you also start the tradition of your gift to everyone as a pair of matching pajama pants, right? And everybody has those and you all wear them to that Christmas Eve celebration and you gift them at Thanksgiving so the expectation is set right, and that allows you to do what you need to do while still gathering with everyone and having a good time.
Because let's be honest, most people don't enjoy getting that dressed up and doing their hair right. Most people would rather just kind of show up as they are and enjoy the company.
Jill Brook: Yeah. And you know, I was just reminded your suggestion of figuring out how to maybe be present to maybe using technology instead of being there physically.
I just have to share that this was not at the holidays, but a few years ago when I was kind of at my worst and I was living in Alaska to avoid heat. My dad was getting married in Florida. And I could not imagine missing this event, but I also could not imagine flying from Alaska to [00:23:00] Florida. It was just not gonna happen.
Sure. And so what my husband did was he found some adhesive Velcro. He bought a cheap tie at Walmart and he figured out how to Velcro an iPad to his tie so that he would walk around with this iPad on his chest where I was getting to zoom in and I got to see the whole thing and I got to talk to everyone and I got to be there on his chest and it was the most amazing thing.
It was truly wonderful. And so I just had to throw that out there in case anybody was wondering if that is possible. It is.
Dr. Kathleen Gorman-Ezell: That's great. Well, and I think, you know, another misconception too is that the holidays always have to be celebrated on the calendar date that they fall on. I think we have this huge tendency that Thanksgiving always has to be on that particular Thursday or that Christmas is always the 25th of December.
And while that may be true, it [00:24:00] also doesn't mean that's when we have to celebrate it. So it's also okay to say, You know what? I'm not feeling great. Could we do our gift exchange maybe in another week when I'm feeling better? I think while there may be some disappointment, It's okay to set that boundary and find another time to be together.
Oftentimes families have to do that anyways in order to get to see everybody and to accommodate in-laws and children and everything else. And so if that is something that is stressful for you, maybe you also decide, you know what? Because the heat, you know, if you're in Florida, the heat is difficult for you.
So you're in Alaska, maybe you celebrate Christmas in July. At a halfway point that's better for everybody. I think we can find some unique ways to work around some of the struggles.
Jill Brook: That's so smart. That's so smart. Okay, so if I were to summarize, what I heard was that it's a good idea to start as soon as possible, [00:25:00] making a list of your wants and your needs and what's not negotiable in order to make it through the holiday with your sanity intact and your health intact, then to communicate that to people maybe in emails is easier. Followed up by maybe a conversation to use that sandwich method that you mentioned where you start with a positive than you put in the meat of what your needs are, and then you follow up with a positive.
And then to maybe just really get creative about what you can do instead to have some fun and connect with people.
Dr. Kathleen Gorman-Ezell: Absolutely. I think, I think that's a perfect summary and as you were talking, it kind of made me think of one other thing, and that would just be, I know a lot of people are financially struggling right now for a variety of reasons.
Oftentimes, we all have these exorbitant hospital bills or medical costs, right? And so I think there are some go-to ways around we [00:26:00] can work on that. For some people it's making some homemade type gifts for others that maybe drawing names out of a hat and putting a limit on how much you're gonna spend.
For some families it's having more of a white elephant type of a gift exchange where you find something funny around the house and you exchange that. And so I think, trying to find those new traditions because what we don't wanna do is over extend ourselves financially, emotionally, or physically, because at that point we end up paying for it for quite some.
Jill Brook: That's a great point. And you know what I love about the white elephant exchange where you pick something that you wanna get rid of and you pass it around. Uhhuh, is that it's usually good for so many laughs and in my experience, laughter is the best thing you can get out of the holidays, more than actual gifts.
And so I think that one is free and it's always funny. Something like that. Absolutely. Is there anything else people should be [00:27:00] thinking about in order to stay calm and sane this holiday season?
Dr. Kathleen Gorman-Ezell: You know, this may sound like a funny thing, but. I think sometimes too, depression also tends to really kick in after the holidays.
I think a lot of people tend to really look forward to the holidays and the different traditions, right? And so for a lot of times I see quite an absence of people in therapy, you know, from November, so maybe early January, and then comes early January, and I think people either feel very alone or things didn't go how they thought that they were going to go, or they were distracted enough by all of the nostalgia of the holidays that now they're back to feeling pretty lonely, pretty sad, and pretty depressed. And so it's really normal to feel that sort of let down and that depression after the holidays, but we just need to keep an eye on it to make sure that it doesn't [00:28:00] escalate to a point where someone may need treatment and if they start to feel like they just can't shake those blues, it's really important to reach out to someone and to get some extra support.
That sounds smart, because that also kind of coincides with the seasonal affective disorder, right? Absolutely. Yeah. Living in Alaska taught me about that and it got a long winter bet. I feel that is a very real thing and so I would encourage people to get help for that. Cause I can attest that even when you're doing everything you're supposed to do, you know, taking the vitamin D, getting outdoors, getting physically active, sitting in front of that Light sometimes the long winter and the darkness can get you.
Absolutely. Okay, great. Anything else that people should be thinking about for the holiday season?
I guess I would say use this as a time to take care of yourself and have fun [00:29:00] in ways that honors yourself.
Jill Brook: I like that. So make it a holiday to yourself, not a time of just purely having obligations to others.
Dr. Kathleen Gorman-Ezell: Absolutely. I think that's the greatest gift you can give to yourself and therefore anybody
else.
Jill Brook: Well, Dr. Gorman-Ezell, these are such wonderful tips. I kind of wish I had talked to 10 or 20 years ago. I feel like I have spent a lot of holidays not doing the ideal things and kind of learning the hard way that, each person needs to kind of take charge of their own holidays and make them work for them, even if it means not doing what the social norms or the hallmark cards would make you think are the things to do and absolutely. Yeah. And so Thank you for all of these wonderful tips. And to everybody out there, I would, if you're listening, invite you to come listen to us. We're always here anytime you need someone to listen to and talk to and hang out with.
Well, [00:30:00] Dr. Gorman-Ezell, that's a lot of great information. Thank you so much for taking the time to speak with us today and to share your wisdom. We really appreciate all the volunteer work that you do for Standing up to POTS all year long. I know you just came off a weekend of working very hard at the 5K event, raising over $36,000 for POTS Research.
Is it okay if we invite listeners to continue writing in their requests for topic to ask you about?
Dr. Kathleen Gorman-Ezell: Definitely. I love to get the requests and I'm happy to help in any way I.
Jill Brook: Oh, thank you so much. Okay, listeners, so if you have questions or topic requests, you can send those to research at StandingUptoPOTS.Org, and that's all for today, but we'll be back again next week.
Until then, thank you for listening. Hope your holidays are as good as possible. Remember, you're not alone, and please join us again soon.
