Episode 49 – Grieving Your Old Life with Katie Gorman-Ezell

00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:29 Jill (Host): Hello fellow POTS patients and terrific people who care about POTS patients. I'm Jill Brook, and today we have an episode of the POTS practitioners. We are speaking about how to deal with unwanted life changes, especially when it comes to missing the old life we might feel that was lost to POTS. We're here with our Standing Up to POTS counseling expert, Dr. Kathleen Gorman-Ezell. You may recall Dr. Gorman-Ezell from our medical gaslighting episode. She is a licensed independent social worker who specializes in treating individuals with mental health diagnoses. She is also an assistant professor at Ohio Dominican University where she researches the interaction between chronic illness and mental health. She earned her BA in psychology from Wittenberg University, her MSW from the University of Michigan, and her Ph.D from the Ohio State University, and she is one of several of us on the board of Standing Up to POTS who helps conduct research on POTS and published papers on POTS. So she really knows this space. Dr. Gorman-Ezell, thank you so much for speaking with us today.

01:42 Dr. Gorman-Ezell (Guest): Oh, thank you so much for having me back. It's great to be here.

01:45 Jill (Host): We have received several requests for you to join us and share any insights or advice you might have about dealing with some version of this scenario: A person has a life that's going pretty well and that they've worked hard for, and maybe they have work or a school routine that works for them. They have hobbies and activities that they enjoy. They have relationships and a social life all worked out. They have goals and aspirations they are working towards. And then POTS or some related chronic illness comes along and blows it all up, to some extent, and it obviously varies a lot from person to person. But the health problems might make it impossible to maintain parts of their old life, maybe schooling or job or career has to change, or maybe hobbies or social life or relationships no longer are the same, or the financial situation may change for the worst, obviously if they can’t do the same work or if medical expenses accumulate, but the upshot is that the old life is no longer sustainable because of unwanted changes to health. And so, for starters, do you deal with this scenario very often? Like, what am I forgetting to say about it? What are the issues involved?

03:09 Dr. Gorman-Ezell (Guest): Absolutely, and I think you've nailed it really well. You know, a lot of times I like to tell people that really the only constant in life is change because change happens all the time. And it's so hard to prepare for it. There's not a lot we can do to anticipate when we don't know what the next thing is going to be, to happen, or the next shoe is to fall off. And so I think, especially when people are given a diagnosis, the change may not even start right away, right? It may be something that kind of progresses over time as the symptoms worsen over time, whereas for other people it might be enough just to completely knock them out. And so it's really hard to know what to do in those situations. And so, I think part of what you have to do is sit down and recognize what those emotions and what those feelings are. It's completely normal to experience a variety of emotions, as these emotions are oftentimes going to hit in waves. So you may have periods of sadness, you may have periods of anger, you might experience bouts of depression or anxiety, and sometimes you may even find joy in the items that you still can do and enjoy. So just as the illness is going to bring good days and bad days, emotions are going to do the same thing. And what I think can be especially challenging is acknowledging and accepting the emotion but not letting it take control of you. So, it's important to learn to sit in emotional discomfort rather than to try to avoid or control the feeling, because the situations aren't something that we control, but we can control how we react to them.

04:54 Jill (Host): Ohhhhh! Sorry, can I interrupt? Because even that much is sort of, like, novel to me. So, you're saying if you're sitting there and you're missing your old life or you're sad, or you're angry or whatever, actually don't try to distract yourself or talk yourself out of it?

05:13 Dr. Gorman-Ezell (Guest): Right. I think it's really important to acknowledge those feelings and sit with them because what happens is, if you've ever had a can of soda, what happens every time you shake it up and then go to open it? It explodes, right? The same exact thing happens with our emotions. So, while distraction can be a good technique at first, if you don't sit with the feeling and actually acknowledge it every time something happens that you perceive as negative or upsetting, it's like shaking that can of soda. And eventually it's going to explode. And so that's why it's so important to actually sit in that discomfort. And so sometimes we also in the therapeutic field talk about this idea that exists where we have this sense of normalcy, and then chaos hits, and then we have to redefine a new sense of normalcy. And so I think that's a lot of what we're talking about, too, when the diagnosis hits, depending upon where people are at in that process, is that normalcy is going to go away. We're going to have that bit of chaos that we have to sit through, maybe grind through 'cause it's not going to be pleasant, and then we have to figure out how do we redefine a new sense of normalcy.

06:28 Jill (Host): So just to make it a little more concrete, what you're talking about, do you mean that you kind of find out that life is not going to be the same anymore and then this bit of chaos is sort of like figuring out, ah!! what am I going to do about work, school, date night, cooking, everything like that?

06:48 Dr. Gorman-Ezell (Guest): Absolutely, absolutely. And I think what you'll find is it's going to vary for a lot of people day to day, right? So you may have a little chaos every day as you kind of develop that new normal and part of it's going to be a little bit of trial and error, and it's going to be allowing yourself to experiment to see what's going to work for you, and also to let your feelings go where they need to go.

07:13 Jill (Host): That is also interesting to me because obviously some people with POTS get a really acute case, like maybe after an infection or something where all of a sudden they wake up one day and their health is completely different, and then there's other people where it comes on very slowly over weeks or even years. And so, I imagine that's a pretty different experience, depending on which way that goes.

07:38 Dr. Gorman-Ezell (Guest): Yeah, that's what's really hard about it is because things are so unpredictable, there's not kind of a one size fits all or fits everyone, and so it's important for everyone to take it case by case, day by day. But I think that there's some general things that we're going to talk about today that everybody can glean a little bit off of and apply to their individual situations.

08:00 Jill (Host): Is this situation with chronic illness very unique in your work? Or is there a lot of ways that people kind of like lose their old life?

08:12 Dr. Gorman-Ezell (Guest): I think that there are a lot of instances where people can kind of lose their old life. You know, just as some examples, I think you know people have been in a car accident, people who have other illnesses, people who face amputation or job loss, loss of a loved one or a child, divorce. So I think, sadly, our lives are full of loss. And this is another major type of loss that people experience - chronic illness, POTS, mast cell - all of these are things that one day all of a sudden you wake up and your life is changing. And that is really, really hard. But I also think when we view it through the lens of grief and loss, and we figure out how do we mourn and come to terms with it, much like losing a loved one, the thoughts and feelings never maybe 100% go away, but we do learn how to live with them and still have a life.

09:14 Jill (Host): That sounds really useful. Do you want to dive into those? Or maybe we could back up for one second before we get to the full grieving a loss of a life because I even have a question that precedes that, which is do you have any tips on how to know when to give up on an old life that doesn't seem like it's working anymore because of your chronic illness. So, for example, if a career is just too physically taxing. You know, I think a lot of us have had a point where we're like Oh no, I should gut it out. I should really try to make this work. I spent years or decades getting trained for this and working toward this. We're taught to never give up. But then at least I feel like in my experience, I spent too long not giving up, I should've given up sooner. Like how do you know when to say when? And is too much perseverance counterproductive at some point? Like, do you have any ideas or tips on that?

10:17 Dr. Gorman-Ezell (Guest): You know, I think we oftentimes in society get caught up in the “shoulds.” And one thing I have to tell my clients is, “Don't ‘should’ on yourself.”

10:25 Jill (Host): [Laughs]

10:27 Dr. Gorman-Ezell (Guest): And so we have these ideas of I should be doing this and this is what it should look like, and the reality doesn't oftentimes match those ‘shoulds.’ And so part of how we cope and what we do is we redefine what it means for us to partake in that job. So does that mean that maybe we need to step back and maybe switch to a part-time schedule or ask for accommodations through the Americans with Disabilities Act, right? And have permission to work from home when needed. Are there ways that we can circumvent totally having to stop what we're doing, but instead find a way to modify and make it work for us in our current situation? I think the other thing that's really important to think about is kind of how we identify our value in our self-worth. And I think one thing that again larger society often struggles with is that our self-worth is defined by our accomplishments and our achievements and what we do for work. And the problem with that is that those are all very external extrinsic things that are going to change over time. And so if we are able to shift how we see ourselves to things that are more intrinsic and more stable and aren't going to shift over time, then we're not going to be as seriously affected when things outside our control change.

12:02 Jill (Host): That's a really neat idea, like, I like it so much that I was actually hoping maybe you could give some examples or expand on that to make sure people really understand what you're saying.

12:12 Dr. Gorman-Ezell (Guest): Sure! So, you know one thing like even when I'm working with a child, if I start off and I say, “You know, what are some things you like about yourself?” Usually they're going to start off with “Well, I'm really good at math,” or, “I really like the color of my toenails when I paint them.” And well, those might be great things about that kiddo, if that's what defines them, those are things that are going to change. What's going to happen when the nail polish chips off? What's going to happen when they score poorly on the math exam? So, what we would want to do in that situation is really try and focus on what makes you unique and the person you are. And so shift from those external things to more things like, “You know, I'm a really good friend. I'm a good person, I'm trustworthy, I am honest. I'm able to make people laugh.” So, I think trying to find those things to focus on will really help redefine the identity into things that are going to be stable even with a chronic illness. With a chronic illness, you're still a trustworthy person. You're still going to be able to be kind and compassionate and caring. So no matter what life throws at you, those are things that illnesses can't take away. And so, if we can shift the focus to something more intrinsic rather than extrinsic, I think it's more empowering to the individual.

13:42 Jill (Host): I really like that, and I've even heard people from other countries say that one thing they dislike about being in America is that the first time you meet someone, they ask, “So what do you do for work?” as if that's all that they care about. So I like the idea of meeting someone and saying, “So, what's unique about you?”

14:00 Dr. Gorman-Ezell (Guest): Yeah! Or, “What are you passionate about? What gives you going in the morning,” right? It's about figuring out who we are because we're so much more than illness. We’re people first.

14:10 Jill (Host): Do you think the age at which POTS typically hits people makes it maybe even harder in this regard? Because I know there's a big range where POTS can hit, but oftentimes it's people who are pretty young and they're still working on defining themselves, and I was thinking about this today and also I think it's tough to have something like this come along when you're so young that you don't have a lot of peers that have had big unhappy life changes happen to them. One thing I've noticed as I age is that dealing with POTS gets easier and easier because other friends and family have other big life things happen, and so my POTS is just one more. It stops feeling that big in the in the grand scheme of things, you know, compared to other people’s, you know, getting laid off or having loved ones die or getting divorces or whatever it is. But when you're like 12, I think maybe some of that is harder because so many people haven't had anything big like that come along yet.

15:19 Dr. Gorman-Ezell (Guest): Right, absolutely. And I think, you know, most of the other kid’s friends aren't spending couple hours a week at doctors appointments and not being able to go to school or play at recess because of their illnesses. But, you know, a lot of the research when we talk about resilience is also really interesting. And so what we do know from resilience research is that everybody has what we call ‘risk factors’ and ‘protective factors.’ And risk factors are anything that could potentially expose our vulnerabilities. So, in this particular case, POTS or chronic illness would be a risk factor. Other risk factors might include poverty, food insecurity, racial disparities, even things like having parents who are working all the time, so they're out of the home, or a parent who, you know, is at risk of losing their job because they're taking their child to all of their medical appointments. So we know that those risk factors all exist. But what we also know is that when we look at the protective factors or things that people have going for them that are positive, they can often counteract those those risks factors. So for example, if we have, you know, that 12 year old with POTS has a couple, one or two really great friends, that's going to be a protective factor. If they have a physician who understands what's going on is able to explain to them what's going on and help them feel heard, that's going to be a protective factor. If they have family members who are able to be there for them, that's going to be a protective factor. And so the more protective factors we can identify, the greater the coping skills, the more likely the individual is to have a positive outcome and not view things in a negative light.

17:07 Jill (Host): That's great. So you mentioned coping skills - do you have any strategies or insights or tips about ways to cope with big uninvited life changes?

17:22 Dr. Gorman-Ezell (Guest): Yeah. I mean, I think that there's a few. I think, you know, first and foremost as a therapist, I'm going to tell you therapy can be really helpful. And I think one thing that's really been a positive to come out of the pandemic is that we're seeing a lot more offerings of telehealth. And so for people who aren't in a position to be able to go into the office every week for an appointment or just aren't feeling up to it, have a lot more options. So, I definitely think that therapy can be extremely helpful with coping. I think when everything feels so out of control, it can be really helpful to also practice forms of self-care. And so those forms of self care maybe even something as simple as spending 5 minutes just sitting in silence and picturing being at one of your favorite places, like the beach, if you enjoy the beach, or in a quiet meadow or in a wooded forest, right? Just kind of visualizing some of those things. I think if you're able to, to journal that's actually really, really helpful. I often tell people that our mind likes to remind us of things. It's an evolutionary trait, but it doesn't really serve us as well anymore now that we aren't all scavenging for food. And so I don't know about you, but if if I ever go to the grocery store and I don't make a list and I know I need eggs, milk, and bread, the whole way to the store, in my mind I'm thinking, “OK, I gotta get the eggs. I gotta get the milk. I gotta get the bread.” And then I get into the store, I'm like, “OK. Go get the eggs, have the eggs. OK. Now I gotta get the milk,” right? And I could pass by 5 or 10 people I know and be in my complete own world thinking about my eggs, milk, and bread. Now, if I actually take the time to write it down and go with a list when I'm driving to the store, I might be jamming to my favorite song or thinking about 5 million other things. I get into the store, I see people I know, I'm probably going to stop and chat with them and still come home with my eggs, milk, and bread because it was written down. And so, our brains have that capacity to continually remind us of things and put it on repeat. And so, when we actually write it down, and there is a difference between handwriting it versus typing it, the way it's coded in our brains, but when we handwrite it down, our brain doesn't feel that pressure anymore to remind us. It's like, “Oh, it's OK. It's on the list. I got this. We're all good.” And so, journaling is a really, really powerful tool.

19:48 Jill (Host): Whoa, whoa, whoa. OK. This is the first I'm hearing of this. You're telling me that handwriting is different than typing? That's totally fascinating. What’s up with that?

19:57 Dr. Gorman-Ezell (Guest): It's just a different way that the brain codes it when you physically write it down versus when you type it, because when you're handwriting it, you're also using some of that motor coordination in hitting different cortices in the brain. And so, it's it's encoding it in a very different way than when we’re quickly going about typing or writing on our smartphones or devices, you know, texting – that kind of thing. Handwriting makes a huge difference.

20:21 Jill (Host): OK, so the journal that I kept for a decade on my computer, I am seeing that that was a mistake. Doh!

20:29 Dr. Gorman-Ezell (Guest): [Laughs]

20:30 Jill (Host): Oops! OK, better late than never.

20:34 Dr. Gorman-Ezell (Guest): Right, right! Well and then you know it doesn't have to - whenever I tell people to journal, sometimes they'll roll their eyes at me thinking I'm going back to, like, having a diary and I have to write, “Dear diary, today this happened...” and have, you know, the little lock on it. But it doesn't have to be like that. It can be just two minutes of scribbles. It doesn't even have to be complete sentences or proper punctuation, it's just a way to get your thoughts out. And if writing isn't your thing, it can also be really helpful to draw or to illustrate pictures of your feelings. I think that can be really helpful, too, is draw a picture of what anger looks like to you. How does the diagnosis make you feel? Is that lots of scribbles? Is it dark colors? Is it light colors? What does that look like for you? And for everyone, it's going to be different, right? But it's a matter of getting it out, so again, we're not keeping it in like that soda can. We have an outlet in a way to get rid of it. I think you know, outside of journaling too, another thing that is kind of hokey, but also can really help, is to try to focus on some positives. So I would challenge everyone to come up with at least three positives for each day. So even if it's something as seemingly small as I liked how the the checkout lady at the grocery store smiled at me. It made me feel really warm inside. That's wonderful and it brings about that joy. And so, we have a tendency, especially in our American society, to focus on the negative. But the more we shift our mindset and focus on the positive, the better we're actually going to feel. I would challenge everybody to sort of try to keep a list of three positive things that happen each day, and then when you're having a really rough moment - and I say ‘moment’ because not every hour of every day is going to be horrible - go back and reread them. Try and put yourself in that more positive mindset. And then finally I also think it's just really important to acknowledge the change that's happening to you. And so sometimes we're so focused on the outcome, that we don't spend the time checking in with ourselves emotionally and again sitting in that discomfort. So, the more we can recognize our feelings and be present with them, the quicker they're going to go away.

22:51 Jill (Host): OK. You had mentioned her three positive things a day and that reminded me of something that I had just seen online, which was somebody claiming that whenever you're feeling gratitude, it's impossible to feel anger or stress at the same time, is that true?

23:10 Dr. Gorman-Ezell (Guest): It is true. So, our brains are really amazing things, but they're only capable of so many things at once. So yes, when we're experiencing gratitude, it is really hard in that same moment to feel, you know, despair or anger or hurt. You know, another thing that I think can help with reset - and and it sounds really kind of weird, and it's actually a trauma technique that we use when people are having flashbacks, but I think it's really applicable to a variety of situations - is that if you're having a really hard moment sometimes that brain just needs a reset. And there's a couple ways you can do that. One way is to keep very ice-cold water near you at all times, and then to actually dip your fingers into the water 'til you almost can't stand the feeling of the coldness because your brain can't focus on that really, really difficult emotional sensation and that cold water at the same time, so it's enough then to take that pause, do some breathing, do something journaling-wise or thought-wise to reset where you're at and kind of start over. Another way you can do that is also by having like really, really sour candies - so not something like you would necessarily eat out of enjoyment ‘cause you like it, but a lot of people I know really like to use like Warheads, for example, as one of the candies or to get like the really really strong mints, like the Altoid's, and put a few of them in your mouth at a time to the point again where your eyes are maybe going to start to water, and you're like, “Why am I doing this???” But what it will do is it will help your brain have that reset and give you that pause to then implement other coping strategies and skills.

25:00 Jill (Host): Oh, that’s so interesting! So, it's like you almost want to shock your system..

25:04 Dr. Gorman-Ezell (Guest): Right.

25:05 Jill (Host): ...to get it out of whatever state it was in.

25:07 Dr. Gorman-Ezell (Guest): But in a positive, healthy way, right? I, you know, sometimes people say well, “What if I hit myself so it hurts?? No, I don't want you doing that at all. [Laughs] But I think finding positive ways to sort of restart the system can be really really eye opening and also give you a completely different perspective.

25:27 Jill (Host): I like that because I've always looked at dogs when they shake it off, and I've always thought, “Oh, I need to find my equivalent of shaking it off,” and that's kind of what this sounds like.

25:37 Dr. Gorman-Ezell (Guest): Yeah, you know, you get your Hydroflask or your Yeti, you fill it up with the ice cubes and the water and kind of submerge your hand and that's sort of your reset or you're shaking it off.

25:47 Jill (Host): Interesting. OK. So I guess you've kind of already addressed this, but in case you have any additional ideas, one thing that happens a lot when we get chronic illness is we’re told, OK, you have to focus on the small victories. And so yes, maybe last month you were, you know, whatever - like the lead in the school play and this month you're lucky if you can just get dressed and you have to consider that a victory. And I remember thinking that was really tough when that first happened to me, and I would always think, “OK, I know I'm supposed to be thinking about this is a victory and this week I was able to get dressed all at once, and last week I only had the energy to either dress my top half or my bottom half at once and then rest and then do the other one.” So, it is improvement but it still just feels so tiny compared to what I was doing in the past. And are there any little tricks for making that any easier, adjusting to the lower expectations?

26:45 Dr. Gorman-Ezell (Guest): Right. It is hard. It is hard. And so, I think part of it goes back to what we had talked about before with the self-esteem, and making that more internally focused and internally based rather than on these external things, like the singing in the school play or getting dressed, that I'm still the same person inside, and I'm going to shift my focus to that. And then I think practicing a little bit of gratitude that, “Hey, I was able to do that today,” but also then acknowledging the anger and the sadness and the disappointment. So, feeling those feelings and maybe even at times writing a letter to the illness. And that might sound really funny too, but getting your feelings out, again, another form of journaling, but if you could write a letter to POTS, what would you say? What are the negative things POTS is trying to tell you about yourself? And then how do you challenge that or counteract that with facts about your own personal life? So, I know it might feel a little bit weird to do that, but when we do that, we're actually shifting our focus and the way we think about things, which is the crux of what we call ‘cognitive behavioral therapy’, which is one of the leading treatments for depression or chronic illness. And so, it's just another way to think about and reframe what's happening to you.

28:10 Jill (Host): Oh, you know we hear about that kind of therapy - cognitive behavioral therapy - pretty often. Do you mind just saying what that is?

28:18 Dr. Gorman-Ezell (Guest): Sure. So cognitive behavioral therapy is basically the idea that our thoughts control our behaviors. So, when we have positive thoughts, we tend to have more pro social behaviors. When we have negative thoughts, we tend to have more negative behaviors. So, an example I often think about is for anybody who's ever lived in the city and has had to ride public transportation. So, if we think about a bus or a subway or something along those lines, and if you're on the train at rush hour, it's really, really crowded and often difficult to find a seat. So, if you're in your seat and you're busy reading your newspaper or looking at your iPad and someone bumps into you really hard, most people have an automatic thought, and that automatic thought is, “Oh my goodness, that jerk. Why are they bumping into me, like can't they see that I'm right here?” And then if the person takes a second and pauses and they let that thought permeate, it's going to influence whether or not they feel angry or they feel sad, you know, whatever that might be. And so, what often happens is we don't pause, we just react on impulse. And so cognitive behavioral therapy really forces us to take a pause, and instead of immediately reacting, we kind of assess the situation. So, if we go back to that situation on the train, we're bumped into, we look over and we notice the person who bumped us has a cane that has a red and white stripe on the bottom, and maybe looks like they're bumping into a lot of things, we may be able to figure out, Oh maybe that person has a visual impairment and that's what caused this to happen. And so, through that pause and thinking about it, most people are not going to be angry at someone or the visual impairment who bumps into them, they're going to try and do the opposite, like, “Oh, would you like my seat? Can I help you? What do you need?”, right, as opposed to feeling that anger. And so that's what what cognitive behavioral therapy really does for us is it gives us the opportunity to pause and to reflect, and then to see the situation in a different light.

30:32 Jill (Host): So with all of these strategies, do they kind of become automatic habits over time? Like, I'm thinking about how in nutrition, right, if somebody is trying to break a sweet tooth, the first day that they eat an apple instead of a piece of cake, it's so hard. But by the 8th day in a row that they're doing it, they're not even thinking about it. It's just this completely automatic reaction. And does being positive or reframing or any of these get more and more automatic over time so that it makes it easier?

31:04 Dr. Gorman-Ezell (Guest): Absolutely. And what we know from the research is that it takes six weeks to form a habit. So, six weeks of consistently doing things will make them become a habit. And so if you can practice gratitude, or if you can just promise yourself you're going to journal every day for six weeks, I can almost guarantee you're going to notice a difference, and this will all become more automatic.

31:27 Jill (Host): That is so hopeful, I think, because I know that, at least for me, there were times where I thought, “Wait, this is my life forever?” And, you know, a lot of things did help it get better, you know, treatments, learning to deal with it, all kinds of things, but in the moment it feels like it's going to be forever, right? But just knowing that nothing more than changing your thoughts can make things better in six weeks is super hopeful.

31:57 Dr. Gorman-Ezell (Guest): Yeah, absolutely. I mean, the brain is a super powerful organ and the more that we can use it for positive things, the better we feel, the better things seem to get.

32:10 Jill (Host): So, in your clients like does anybody actually get the life path that they expected? Or does everybody eventually feel like something unexpected happened and threw them off? Is that pretty common?

32:22 Dr. Gorman-Ezell (Guest): Yeah, I would say, you know, most people don't come to see me when things are going well. I don't tend to meet people at the best times in their lives, and that's OK because my job is to meet them where they're at and to see what we can do to make things better. And so I think at some point we're all confronted with loss and we're all confronted with sadness, and so it's how do we make that work? And what do we do to get ourselves into that place? And so I think that's kind of where grief and loss tends to come in. I think that, you know, oftentimes when we talk about grief and loss, everyone thinks back to the days of Elizabeth Kubler-Ross, who had sort of the five-stage model of mourning, and it used to be the idea that we experience our grief, then we're in denial about it happening, going on to anger, to bargaining, depression, and then finally acceptance. But that didn't really resonate with a lot of people. And the reason it doesn't resonate with a lot of people is it implies that grief and loss occurs in these distinct stages, which just frankly isn't the case. And so, it doesn't account for daily changes in mood or maybe momentary changes in mood based upon what's going on. And so, I think what we've really started to understand is that grief looks really different depending on the condition we're talking about, whether it's chronic illness, whether it's the loss of a loved one, whether it's a job loss, whether it's a trauma. And so lately we've been looking more at this idea that there are tasks of mourning. And so, a gentleman by the name of William Warden came up with these tasks, and so he would really postulate that the most important thing to get through a loss in a healthy way is to begin just by acknowledging the reality of loss and then to address all of the feelings that go along with it and then trying to figure out, now my environment has changed. What does this look like and how do I continue living? And his tasks aren't things that are going to just be checked off - “Yep, I acknowledged it. I'm ready to move on.” These tasks might be something we have to go through every single day or multiple times a day, because we also know that people experience what we call STUGS, or sudden temporary upsurges of grief. And so that can happen when we're maybe watching a show. Let's say for example, we go back to that high school kid who is in the play and always had these dreams of being an actress. And then her favorite TV show comes on and a character on the show is diagnosed with a medical condition. That's probably going to trigger some type of grief reaction in that kid because it very much emulates their trajectory that they had laid out. Or maybe for someone who used to be really athletic and enjoy competing and then POTS took that away from them. And then they happen to turn on the TV and they're watching a televised competition of that particular sport. That can be really difficult to see and to deal with. And so, at that point, you're going to have to go through those STUGS again. I think we see it, you know, in other arenas too. It's kind of like maybe a young woman is planning to get married and had always envisioned her father walking her down the aisle and then something tragic happens and the father passes away. And now it's time for her wedding day and maybe her brother is walking her down the aisle instead. That can be really hard and trigger that grief and those feelings about her father. And that's really, really normal and happens a ton when we're talking about grief and loss.

36:20 Jill (Host): Wow, that resonates with me, and I did not realize that there was a name for that. So, if you are aware of some of your STUGS, should you work to avoid them or work to work through them?

36:35 Dr. Gorman-Ezell (Guest): I think that the best thing you can do is be aware, right? So, if there's a situation that is just going to be too hard for you that particular day, then I think it's OK to avoid it on occasion. But overall, I think it's going to be really important to just acknowledge your feelings about it and allow yourself to feel how you're feeling and be OK with feeling that way - that there isn't a right or wrong way to feel, that what you're feeling is valid, and it's OK and to sit with that discomfort and then decide how do I go about continuing to live? Is this something that I can avoid long term? So for example, if it's seeing your practitioner and it's really important you see the practitioner, you're probably going to have to face that. If it's something more like, you know what I'm not quite ready to go to the track meets and watch my friends compete because it brings up too many triggering thoughts about when I used to compete, that's OK. Then sit out for a little bit of time until you feel like you're in a place where you can do it or do it with support. But there's no right or wrong answer. I think the biggest thing is about awareness.

37:43 Jill (Host): That makes a lot of sense. Some patients have to work constantly, or it feels like almost constantly, to kind of maintain their health. For example, they have to pace their energy or watch their body position or eat or drink really often or take medicines. And we had a question from a listener that's kind of related to this idea of identity that we were talking about. And she was wondering if you had thoughts about how not to end up feeling like your identity is that of the chronically ill person, even if you are one of these people who, like, is almost always having to deal with your health in some way. Do you have any thoughts about that?

38:30 Dr. Gorman-Ezell (Guest): Sure. So, I think part of it is about finding some type of meaning and passion outside of the illness. And so, one thing I think that can be really helpful to do for things like remembering to take your medication, or if you need to change your position every 25 minutes, you know, for example. I think one thing you can do to decrease the mental load of having to think about it all the time is to actually set an alarm. Set alarms for those things so that your mind isn't always having to remind you of what you need to do. It’s sort of like the grocery list - it's going to take a little bit of that pressure off of your mind. And then I think also trying to develop hobbies and passions that can be completed regardless of what's going on for you that particular day. So, maybe you're going to make it a goal to really try and delve into some new author. And so maybe instead of reading 'cause it's not a good day for reading, you listen to the audiobook. Or maybe if you know you're going to be kind of stuck in bed, you decide to watch some different films. And maybe when you're feeling a little better, write some critiques on them, or start a blog. So, I think a lot of it is trying to find meaning and passion and things you enjoy that are very outside the context of the illness. And I think that can then help people to not feel like they're being defined by that illness.

40:01 Jill (Host): I also am struck by what you said a minute ago by, for example, setting alarms or things like that so that your mind doesn't have to be always on it because it made me think about how, OK, even if POTS is going to kind of own your body a lot of the day, it doesn't have to own your mind also. And it kind of just suddenly dawned on me that what you said made a lot of sense, that at least if you can kind of get it on some sort of automatic routine or something, at least your brain doesn't have to be focusing on it. And I could see how that would make a big difference.

40:36 Dr. Gorman-Ezell (Guest): Right, 'cause then you're not only feeling it, but thinking about it. And so the more we can do to reduce your mental load, I think the better you're going to feel.

40:45 Jill (Host): Super good advice, I love it. Do you have any other thoughts or advice on big unwanted life changes that could be a result of POTS?

40:57 Dr. Gorman-Ezell (Guest): I mean, I think the biggest thing really is allowing yourself the time and the space to grieve, and that there's no timeline and everybody grieves differently. So for some people it might be lots of tears, for other people it might be a lot of anger. And that's OK. There's no right or wrong way to grieve. The most important thing is you allow yourself to grind through it. So you're not going to be one of those soda cans that's going to explode.

41:28 Jill (Host): [Laughs] That is a good image to leave in our minds That is memorable. Well, Dr. Gorman-Ezell, that is so much great advice and information. Thank you so much for taking the time to speak with us today. Is it OK if we invite listeners to keep writing in their requests for topics we can ask you about?

41:50 Dr. Gorman-Ezell (Guest): Absolutely! I, you know, would love to do anything I can to help support the listeners and people with POTS. So please please please write and let me know what topics you want to hear about and I would love tTo come back and talk with all of you. Thank you so much for having me.

42:05 Jill (Host): Awesome! OK and hey listeners, remember that as always this is not medical advice. Consult your health care team about what's right for you. But thank you for listening. Please consider subscribing because it helps us get found by more lovely people like you. Remember that you're not alone. And please join us again soon.

42:27 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast And I would add, if you have any ideas or topics you'd like to suggest, send them in. You can also engage with us on social media at the handle @standinguptopots. Thanks for listening and we hope you join us. This show is a production of Standing Up to POTS. © 2022 Standing Up to POTS. All rights reserved. [Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org]