Episode 23 – Medical Gaslighting with Dr. Katie Gorman-Ezell https://tinyurl.com/s83zdyrk

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 (Standing Up to POTS): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook, and today I'm excited to discuss the topic of mental health and medical gaslighting. If you're not familiar with what medical gaslighting is, don't worry, our expert will define it for us. This is our first episode topic that was suggested by listeners. So, thanks to everyone sending in requests. I'm going to read one of the emails we received that inspired today's topic. It says “I was just listening to the new podcast and it mentioned sending in ideas for possible topics. One thing I've never heard discussed and would love to learn more about is how to get past feeling resentful of those that didn't believe you. I know that for so many of us POTS takes years to diagnose, and that period is often full of gaslighting, being told it's all in your head, or just anxiety, or just hormones, or just your being overly sensitive or whatever with health care providers. If you get this type of response, you can always just switch to a different practice. But what about the more permanent people in your life, like family and friends, that didn't believe you, how do you move forward? It's hard not to resent them and the years of pain they caused. It's hard to get over the years of making no progress and actually getting worse physically because I was blaming myself during that time and trying to just snap out of it instead of pursuing the right doctors, medical tests, or treatments that would have helped. Mental health ramifications of chronic illness have always been interesting to me, and I would love to hear aspects of it being discussed more. Thanks again for the podcast. It's awesome to have more resources out there on POTS.”

Obviously it's a really tough topic, but we are very, very fortunate that one of our awesome board members here at Standing Up to POTS just happens to be a great person to consult on matters of mental health and chronic illness. Dr. Gorman-Ezell is an assistant professor and the field director for Ohio Dominican University's social work program. She earned her Master's of social work from the University of Michigan and her doctorate from the Ohio State University. She is an independently licensed social worker who has experienced treating children, adolescents, adults, and families across the continuum of care. Dr. Gorman-Ezell believes in bridging the gap between research and practice. She does both. Her major areas of interest include chronic invisible illness and suicide. She is one of our Standing Up to POTS board members who does independent academic research and publishes on these topics, and she also maintains a private practice in Columbus, OH. So, Dr. Gorman-Ezell, thank you so much for speaking with us today.

03:28 Dr. Gorman-Ezell (Guest): Thank you so much for having me. It's great to be here. I'm excited to shed some light on this very important topic.

03:34 Jill (Standing Up to POTS): Yeah, you know, since I started hosting this podcast, I cannot believe how often this topic comes up. I had thought maybe that I knew I had experienced it, but I didn't realize that it seems to be everybody and how much of a mark it can leave on people. Maybe we could start by just asking you to define medical gaslighting for us.

03:59 Dr. Gorman-Ezell (Guest): Sure, I'd be more than happy to. So it's interesting. The term “gaslighting” actually originated in Great Britain in 1938 and it came from a play that was entitled Gaslight. And part of the way that it got its name was in this play, a husband and wife were having some marital discord, and the wife started to feel like everything she was doing or saying was coming off wrong. And the husband really perpetuated that. So she would go upstairs in their home or their flat in the play and think that you know, “Boy, it looks like things have been rearranged or the lights are dimmer,” and she would say something like that to her husband and he would, “No, no, I don't know what you're talking about. You're crazy. We haven't changed anything. Nothing is different.” All the while he had been changing things and the gaslights that they used for light were actually becoming more and more dim. So, the play was entitled Gaslight. A movie by that same title came out in 1940. And then psychology and popular media just kind of piggybacked on that, and have picked up the term, and so that's where the term gaslighting comes from. And we see it in a variety of settings. So, it just kind of how different people can relate to it and see it impacting their own lives.

05:26 Jill (Standing Up to POTS): Is it correct then it involves having somebody question their own perception of reality by maybe minimizing what they're experiencing or belittling it?

05:37 Dr. Gorman-Ezell (Guest): Absolutely. So, gaslighting really is also a form of psychological abuse and the aim of this abuse is to make the victim question their sanity, feel, if you will, crazy, and start to question the experiences in their environment. And perhaps the most damaging part of gaslighting is that that individual starts to question their sense of self. So, the other thing that can happen is gaslighting can really make the victim almost feel more dependent on the abuser.

06:10 Jill (Standing Up to POTS): You know, as I was getting ready to talk about this, I was researching it and I came across a couple of the things that you had said and I thought to myself, “Wow, this is really a big deal. This can be serious." You had mentioned that it can be a form of abuse, but is it always intentional or can it be a completely unintentional thing that people might do also?

06:32 Dr. Gorman-Ezell (Guest): You know, I would say it's a mixture of both, but the important thing is that when it's brought to that person attention, that they should change their behavior.

06:42 Jill (Standing Up to POTS): And I guess before we move on, so is there also may be such a thing as like, gaslighting “light”, where maybe instead of outright questioning someone's perception of reality, maybe they just don't take that person very seriously or they do something to a lesser degree?

07:03 Dr. Gorman-Ezell (Guest): Yeah, absolutely. So, I think that can happen a lot too, and any behavior, whether the individual is being completely ignored or they're verbally and overtly treating the person that way, the end result is still the same in terms of that individual’s feelings.

07:23 Jill (Standing Up to POTS): Wow, OK. And, you know, even though it sounds like such a terrible thing, I think we see it so many places and so often. Is that what you experience when you look at the medical world? Do you see that this is maybe more prevalent than it ought to be?

07:45 Dr. Gorman-Ezell (Guest): Absolutely, and I can even tell you a little bit from personal experience. I have two young boys that are twins that both have invisible medical illnesses, and my one son in particular suffers from seizure disorder that's really difficult to control. And so, we have seen countless specialists to try and, you know, get him on the right medications and figure out what we can do to help him. And with a few of the physicians, they've even said, “You know, I know you're saying this, we've only caught some glimpses on EEG. We really can't do anything else until you get a video of this happening.” You know, and as a as a parent and as a mom, my thinking is you know my son is having a seizure and needs attention, I need to be doing that instead of pulling out my cell phone and trying to get a video of this so you're going to believe me with what I'm telling you. I have no reason to lie to you or to tell you something that's not true. And so I think in the medical community, you know, like with him, with individuals with POTS, with mast cell, all types of chronic invisible illness, this is happening a lot and a lot more often than we want to acknowledge. I think we also, when I'm in my therapy office, I tend to see it more in terms of individuals who have experienced trauma, and also within relationships. So, I would say when we talk about gaslighting, and if you look at the literature that tends to be more where we see the literature going and really focusing in on are those experiences of trauma and of intimate partners. But I think what we're not talking about, and we need to talk more about, is this experience here in the medical community. The other place I think that we see it as well is if we look at the broader society, it can even be traced back to issues of gender inequality and racial inequality.

09:40 Jill (Standing Up to POTS): Can you talk a little bit more about that? Is that like how we talk about - like we hear about hysteria being blamed for things throughout the ages?

09:48 Dr. Gorman-Ezell (Guest): Sure, absolutely. So, you know, even like right now, all of the discord that's going on over the idea of critical race theory and whether or not it should be taught, really goes back to that gaslighting and the perceptions of what happens and what the truth is. And so for black, indigenous, people of color, oftentimes the horrible traumatic history that has occurred is not being acknowledged. And so that, from a structural title perspective, really is a form of gaslighting. I think when we talk about women or gender, transgender rights, LGBTQIA+ type situations, again, we're as a society collectively minimizing the experience, right? That minimization or refusal to acknowledge the situation is also gaslighting.

10:44 Jill (Standing Up to POTS): So this is so interesting to me, and I want to come back to that in a minute. But just to make sure all of our listeners are kind of super clear, 'cause this might be some of their first introduction to this idea, are you able to give us like a few examples of what medical gaslighting might look like to a POTS patient?

11:03 Dr. Gorman-Ezell (Guest): For a POTS patient, it might be going in and trying to find the diagnosis. And so many POTS patients have to go through a multitude of different physicians, different referrals, being told it's in their head, they don't know what they're talking about, the test results came back normal, why are you having these symptoms? And it's a matter of continuing to persevere and find that physician who's willing to listen. So that gaslighting is that experience of being told, “You don't know what you're talking about, you know, the medical test isn't showing this, I don't know why you're saying that you're passing out, I have no reason to believe this. You're in all this pain, but we can't see it, we can't find anything on the physical exam. You know, I'm not sure what we can do to help you, or if there is anything we can do to help you,” as the physician quickly walks out the door and the POTS patient is just left feeling so demoralized. And then that patient may start to question well, is this really happening? Did I really pass out? Did, you know, my heart rate really change? Is it in my head? And so you leave the office, it continues to happen. You think, “I really think this is happening.” You go find another physician, you get a similar response or you get a referral to all these other people that are completely outside, and oftentimes you might even get a referral to someone like me because people are going to call it psychogenic, or in other words, in your head. And so because you think it's happening, you're somehow willing these physiological symptoms.

12:38 Jill (Standing Up to POTS): And then if they blame it on things like just stress or just hormones or just being overly sensitive, is that gaslighting, or is that a different phenomenon?

12:51 Dr. Gorman-Ezell (Guest): That, that is a form of gaslighting because the patient is not being heard, especially if the patient, you know, retorts that, “Well, no, I've had my hormone levels checked. I know it's not that. This isn't how my body responds to it.” So it's the idea, medically, that the patient isn't seen as the expert. In that medical relationship, the patient is the expert on their body - nobody knows more about what's going on than that individual. And I guess, in my mind, I look at the medical relationship, the helping professional relationship as a joint venture where, if you think about, for example, flying an airplane, the patient really is the pilot. I see the professionals as the navigators. So OK, here’s what's going on. This is how we're going to get you what you need. This is how we're going to alleviate the symptoms. But unfortunately, so often that doesn't happen.

13:42 Jill (Standing Up to POTS): You know, it's interesting because as I've been doing the patient interviews for this podcast, pretty much whenever I ask someone if they have any message for others, their message is to not allow anyone to gaslight you. And I sometimes think, “Geez, I wish I had heard this podcast 20 years ago.” Because I'm not sure why I was feeling like I needed to be so deferential to the doctors and I believed them and I feel like some people get the memo that you don't have to believe everything a doctor tells you [Laughs] Especially in that context, and I wish I had gotten that memo much earlier. But that leads me to my next question. Gaslighting seems to come up really often in POTS, maybe because there's so many vague symptoms that the medical community just tends to think nobody could genuinely legitimately have that many, and so it must just be imagined or something. But I've been surprised just how much it affects people psychologically and maybe even traumatizes them sometimes. I mean, we're talking about people who have lived years with all kinds of very severe physical pain sometimes, like nerve pain, musculoskeletal pain, migraines. But that's not what gets them - it's the gaslighting that leaves the mark. And it's that that they sometimes talk about as being the hardest part. So my question is, why is it so dang hurtful to be gaslighted?

15:12 Dr. Gorman-Ezell (Guest): And I do think it's incredibly hurtful, and I think part of the reason that gaslighting is so hurtful is anytime we have a conflict or a disagreement - whether it's friend, a coworker, a partner - part of what we do is we talk about it and usually both individuals take responsibility for their actions or inactions. And when someone is experiencing gaslighting, what happens is the perpetrator, if you will, of the gaslighting does not take responsibility for their actions or inactions. So that makes it really hard for the person who is struggling to move forward. And then it starts to create doubt in their mind, helping them to wonder if they somehow contributed to or caused the problem. And once we start down that path and that path of not taking accountability, it actually makes the healing process much more traumatic, as you mentioned, and it becomes difficult to navigate that medical system and it really starts to cause people to question their sense of self. And when we start to question our sense of self we lose sight of why we were there in the first place.

16:28 Jill (Standing Up to POTS): So I was one of those people that had a really long diagnostic delay after it took me a long time to even start looking for answers, largely because whoever else might have been gaslighting me, I was gaslighting myself. And it led me to a place of very, very low self-esteem and low self-confidence. I didn't feel worthy to like make any decision. Like, I couldn't even pick a color of paint. I just had completely lost any confidence that I was capable of doing anything. And sometimes POTS can maybe do that to me, too, because when you lose the ability to stand up and even shower, you know, until you figure out other ways to do those things, that kind of, I think, can make your self-esteem take a hit too. But are those things that can sometimes happen to people, if the people of authority around them are gaslighting them?

17:27 Dr. Gorman-Ezell (Guest): Absolutely. So when we – you know, I think it's important we're talking about sense of self, I'd like to really help delineate, you know, the difference between self-concept and self-esteem, because we talk about those so interchangeably in society but there's actually two really different things. So self-concept is your perception of your abilities. So I'm good at this, maybe I struggle with that. So, I'm really strong in math, but maybe writing is difficult for me. That would be an example of self-concept because it's something that has objective data behind it. Our self-esteem is actually then the positive or negative feelings that we attribute to who we are as a person. And so that that sense of self when we’re talking about that really takes aspects of self-concept and self-esteem and combined them. So with POTS, as you're talking specifically, that self-concept is going to change over time, based on the illness and what you're able to do or not able to do, right? Because you mentioned, like, it's really hard to take a shower and stand up so that made me start to question. And I think that's why it is so incredibly difficult for individuals with POTS who are struggling with the gaslighting because you're having that self-concept change, but then you're also feeling badly based upon how the physicians or the family members or the friends in your life are treating you. So, it kind of becomes a double whammy and it can really really bring you down.

19:01 Jill (Standing Up to POTS): Yeah, and you know I feel a little bit like anybody who's listening to this podcast right now has gotten far enough along that they must at least suspect that they have POTS or their loved one has POTS, and so I think probably the hardest part is before you make that realization where you have no idea what's wrong with you. But this makes me wonder, is there anything a patient can do anywhere along this journey to prevent this from happening or protect themselves if it does happen?

19:37 Dr. Gorman-Ezell (Guest): Absolutely. So, I think the first thing that a patient can do is to try to recognize what's happening, and so I think the fact that we're talking about this is so important. And that's really helpful because there's a name for it, right? It's not just this feeling you're having, and why are people interacting with me in a different way? It's that we have a name for it, and it's called gaslighting. And so sometimes just by having that label and being able and being able to call it something takes the power away a little bit right away, right? The other thing that we can do, I think, from a really practical side of view, and I really like practical things. So one thing we can do is actually write things down, so maybe you have an interaction with a physician or with a friend or a family member. I think it's really important to write down what happened, almost like a sense of journaling. So you can maybe write down the incident, specifically, how you felt, how that person made you feel, and what the response was. And I think that can help to start a log, so if you start to question the relationship, or they start to make you think, “Hmm, did I really experience that?” You have a way to go back and say objectively, “Yes. Yes, I did, and that's what happened.” I think once you realize that gaslighting is occurring, one of the best things you can do is disengage. And I recognize that maybe that’s a little bit easier in the medical community, to disengage. But it becomes a lot more challenging when we're talking about family and friends, and maybe not wanting to completely write them off, or know that you're going to have to see Aunt Ethel at Thanksgiving, and how do we interact? So I think when we disengage, that’s up to the person to decide how far they watch disengage from that individual. So maybe it's that you don't discuss the illness anymore and you kind of stick to the weather, right, and try to limit those interactions. Or maybe it's that you have to, for your own mental health, take that person out of your life. And I think it's a very difficult but very personal choice. And that's where actually I think therapy can be really helpful is to figure out how to deal with these specific situations and have a sounding board who is completely objective listen and say, “Yeah, you're right. That is not OK, and here's some strategies that maybe you can use. And if these don't work, then yeah, I think we are gonna probably have to cut or really tailor that experience.” I think the other thing that you can say to individuals who are gaslighting you is to say something to the effect of: “You know what? My thoughts and experiences are valid, and I don't appreciate you saying that they aren’t.” And by setting that boundary, not going back and forth and engaging, but just setting a really clear boundary and sticking to that - usually most people who are somewhat healthy are gonna respect. The people who don't respect it, and there's research that backs this up, tends to be more people who maybe have like a narcissistic personality disorder, for example. And in that’s who we see most frequently in the other context engaging in gaslighting. But most people, when you set a boundary, may not like it but over time, will respect it.

22:56 Jill (Standing Up to POTS): So, what I hear you saying is that the patient might need to get a little bit tough to protect themselves, and that's what I keep hearing from other patients as well. That is interesting, and maybe it's tough for the people who want to always be harmonious and be liked by everyone and not make waves and not create additional stress or strain on any relationships. But it sounds like that is what's necessary to protect yourself?

23:26 Dr. Gorman-Ezell (Guest): Absolutely. And in time, when people see that you're setting boundaries and you're maintaining those boundaries, most people come around and will respect them and in time, apologize.

23:34 Jill (Standing Up to POTS): OK. Number two thing I wish I'd learned 30 years ago. OK. [Laughs] So can we come back to something you said earlier which was that this is a phenomenon that can pop up in a lot of different areas of life and you had mentioned, I think maybe systemic racism and I think I've seen studies showing that people of color get less pain medicine. Their pain is taken less seriously. I think there are studies showing that females who show up at the ER with abdominal pain on average wait longer than males who show up. Is this a thing? Why is this a thing? Why? [Laughs]

24:16 Dr. Gorman-Ezell (Guest): Right! So I think it's how we've been conditioned as a society, and unfortunately that's where the effects of the gaslighting is really occurring. And so I think what ends up happening is in the training programs and those types of things, physicians are taught to prioritize based on a certain number of things. And based on that, then they decide who they're gonna see. And I think, unfortunately, because of the systemic racism and the classism, they have been hot to consciously or unconsciously discriminate against those individuals.

24:53 Jill (Standing Up to POTS): When I hear that, I hear that as much as I hate it that I've been gaslighted in my life, I'm probably guilty of having done that to plenty of other groups too, and I should be more aware of assumptions that I'm making. Is that fair?

25:12 Dr. Gorman-Ezell (Guest): Absolutely. I think we all really need to be thinking about what it would be like to put ourselves in somebody else's situation, and I think too often we just kind of go off of our own experiences or our own upbringing, and not recognizing privilege. So I think it's important that we really spend some time looking inward and figuring out who we are, what our values are, what our beliefs are, and where they come from. Do I believe this because my parents told me, and that's just the way it is? Have I had personal experience? I mean, I think, you know, a lot of research has been done on the LGBTQIA+ community and what has been found is that people will discriminate and have biases towards these individuals until they realize that maybe one of their family members, their friends, their coworkers, is part of that community. And then they have a completely different attitude and experience. And I think we can even see that sometimes with physicians in the POTS community is if they have some type of connection to the illness or other physicians as well, they tend to treat it very differently than if they've never met somebody close to them who has experienced that.

26:31 Jill (Standing Up to POTS): Right. And I think that I hear from a lot of patients that when they find a doctor that they absolutely love, it's not necessarily because that doctor specializes in POTS or even understands so much about POTS, but for whatever reason, their personal experience has led them to basically understand this type of invisible illness and this type of situation. And so that can maybe be valuable that POTS specialists are few and far between, but there may be more doctors who can be great for this other reason. So OK, granted it's been like 30 years since I was in the psychology classroom, but I remember learning about something that they called victim blame and I have no idea if this is considered legit anymore, but at the time it was discussed that, you know, maybe sometimes it's human nature to almost kind of blame people for the bad things that happen to them because it is psychologically protective to the blamer, because if you can think of a reason why this happens to someone else then you're less likely to have to worry that it could happen to you, because if just random, terrible things can happen to perfectly nice people like you, then that's scary and anxiety producing. Do people believe in this anymore? Could that be a factor?

27:54 Dr. Gorman-Ezell (Guest): Absolutely. So I think it's probably the term we're using now is like defense mechanism. And it's just the same thing if you think about when, if you've ever lost a friend, family member, loved one, usually the 1st thing and, and there's all the jokes about it, but it's denial. And when we're talking about denial, the psychology joker is no, it’s not a river in Africa. We're talking about the, you know, the ability to really not be able to process what happened. And denial actually serves as a psychological protective factor because it allows us to integrate the losses that we're experiencing. And so to your point, I think that the victim blaming serves as another type of a defense mechanism, because then it doesn't have that physician or that loved one questioning why they can't figure it out, because we all have egos. Whether we want to acknowledge that or not, we all have egos. So, if you can't figure it out, it can't be something wrong with me, it’s something wrong with that person. And then also to your point, it's a protective factor against worrying and wondering, can that happen to me? Am I that vulnerable that this could be me in 10 years?

29:03 Jill (Standing Up to POTS): So that's all so fascinating and what this makes me think is, you know, kind of getting back to our listener’s question that this isn't something that you can necessarily blame someone for doing if it's human nature and it's society wide and it happens in all of these different areas of life, and we can work to get over it and to try to prevent it and hopefully awareness raising things like what Standing Up to POTS does can help, but it sounds like it's a really omnipresent problem. Is that correct?

29:47 Dr. Gorman-Ezell (Guest): Yeah, I would agree that it's correct to varying degrees, but I think what's so important is that we recognize it and we label it, because the most damaging part of gaslighting is when an individual begins to question their sense of self and feel uncomfortable within their own body and skin. Which I think people with POTS already feel uncomfortable in their own body, so we don't want to add to that. So as long as we're recognizing it, we're calling it something, and we're talking about it, that's where we have to start.

30:26 Jill (Standing Up to POTS): And, you know, I also can relate to a secondary damage when it comes to an illness like POTS, there's obviously a lot of different things that can cause POTS, and there's a lot of different types of POTS, but for many of us we have a type of POTS like with an autoimmune basis, for example, where if you spend years blaming yourself and trying to just snap out of it because you believe you're crazy because you've been gaslighted, that is extra time that your immune system has doing damage in your body. So, you know, you're going to pay that extra price, and that was mentioned by our listener, and so do you have suggestions for that person who wrote in to us on how to get past resentful feelings toward the family or friends who told her it was all in her head?

31:22 Dr. Gorman-Ezell (Guest): Yeah, absolutely. I think, you know, one thing that's really important is to try and find validation elsewhere. And whether that's like in our Standing Up to POTS community, our Facebook groups, whether that's finding a support group, whether that’s, you know, reaching out and making some new friends, what's so important is that you have that support and you're getting those needs met from whoever that may be. So, I think that’s one of the first things to do. I think another thing, you know, we've talked about practical tips before. If you're talking with someone and the conversation start to feel really circular, that's often a sign that gaslighting is occurring. And so that circular conversation, I think is a big red flag that it's a good time to disengage.

32:14 Jill (Standing Up to POTS): Can you give an example of what you mean by a circular conversation? What would that look like?

32:21 Dr. Gorman-Ezell (Guest): Sure. So, a circular conversation might be, “I had a really rough day today. I was in a lot of pain. I just felt really frustrated by it.” And maybe the person you're speaking with says, “Well, you're always in pain, what's different about today? This happened to me at work today. You just need to get over it. You’ve been to the doctor. You know, they haven't found anything wrong with you. I don't know why you keep talking about this.” And so instead of trying to convince the person, right, and that's I guess what I mean by circular is that that going back and forth of trying to convince the person of what's going on and why your experience is valid, I think once we recognize that circular conversation, that that disengagement is so critical. And then I think it's really important to go back and reflect on that journaling we talked about, because that also will remind you, no, this isn't the 1st time that I had this incident with this person. This is like the 5th, and every time it's the same. And so that again reminds you, OK, I gotta come up with an exit strategy to disengage, whether it's just exiting the conversation or on the other extreme, exiting the relationship. It's that disengagement that needs to be happening then, so there's not further damage to you.

33:37 Jill (Standing Up to POTS): Got it. OK, so I guess I come back to, once again, I'm just so grateful that this community just always seems so supportive of one another, and so I feel like there's always wonderful people to be found in this community, if you need - if you need to find a group that's validating and understanding.

33:54 Dr. Gorman-Ezell (Guest): Absolutely. I think it's wonderful that there is such a sense of community within this group, and I wish that more illness groups had similar situations.

34:04 Jill (Standing Up to POTS): Yeah. And speaking as somebody who had POTS before there were any chronic illness communities, I definitely noticed a huge difference. I am so grateful/ You know, I kind of think of it as the dark ages before there was a Standing Up to POTS or other communities for that very reason that you're talking about.

34:24 Dr. Gorman-Ezell (Guest): Right. Well, it's so hard to navigate this system on your own, right? And I think that's why we also see such a high rate of completed suicide or suicide attempts among this group of people, especially before people are able to find individuals with whom we connect with, right? We know that social connectedness such a protective factor against that.

34:48 Jill (Standing Up to POTS): Wow. So, do you want to throw in any practical tips around how people might try to create more social connections if they're in a tenuous spot right now?

35:00 Dr. Gorman-Ezell (Guest): Absolutely, and I think, you know, I will say this – like, I think for individuals with POTS it's so difficult because it's kind of difficult to leave the house sometimes or get out of bed, which makes maybe meeting someone for coffee or going out to lunch a really challenging experience. So I think that's one wonderful thing about the Internet and technology is that if you can find a group of people you connect with, even if it's that you're posting and chatting in a group page all day, and then kind of go to direct messaging or private messaging and kind of can build up that relationship, then maybe talk on the phone, that’s a really great way to do it. I think however you can find someone to engage with, you should do it. Even if it's in like a video game community. Whatever it takes, you need to find connection because connection really is so important.

35:56 Jill (Standing Up to POTS): Yeah. Boy, that certainly tracks with my experience and this Standing Up to POTS community has been amazing. And I have to say that's one huge thing I get out of doing so much volunteer work for the chronic illness community because you just meet incredible people working side by side on an important mission. And at least my experience is that I get so much more than I give by volunteering in this space.

36:20 Dr. Gorman-Ezell (Guest): And I think advocacy is so important too. And so whether you're doing it that way or you feel like you're connecting with others in another volunteer capacity that you could do remotely if you're not feeling up to going, that’s wonderful, too.

36:42 Jill (Standing Up to POTS): Wow, this is also helpful. Is there anything else that we have not yet said about gaslighting or about getting past difficult experiences from it? Anything else we should cover or mention?

36:58 Dr. Gorman-Ezell (Guest): Yeah. I mean, I think, you know, the listener who wrote in did ask for you know specific suggestions on how to get past the resentful feelings toward family or friends that told her that it was in her head, I guess I would say to her specifically is I also think it's important to acknowledge the resentment and anger, right? It's a very real feeling and usually when someone experiences anger as an emotion, it has another partner emotion. And whether that’s sadness, whether that’s resentment, anger doesn't usually travel alone. And so I think recognizing that is really important. And to really try and understand where is that rsentment coming from, and maybe actually jot that down. And then trying to take action where you can. And this might sound funny, but I think, you know, whenever there's disagreements, usually outside of gaslighting, both people have a part. So I think owning your part in it, too is important, if you have a part in it. And then knowing that you can leave the situation when you need to. Now, sometimes, you know, if you're maybe at a family dinner and you're not in a position where you can drive and you're sort of stuck there, you can try and find other creative ways to leave. So whether that’s listen to some music or trying to go in another room, just getting yourself out of that horrible situation. Another thing I like to challenge my clients to do is to write what we call a ‘no send’ letter. And that's where you write a letter to the person that you're feeling angry with and you tell them everything you want to tell, and it doesn't necessarily have to be PC or perfect grammar or sentence structure. You just kind of get it all out because what happens is our brains are trained to ruminate on things that bother us, but when we actually write it down, and it does have to be physically writing it down rather than just typing to get that release, that can be really helpful. And I've had a lot of clients who actually will actually go through, edit that letter, and send it to the person. And that's been a really good springboard for discussion, if the person is in the space where they can hear it, obviously. Sometimes people just aren't going to be able to hear it. But just the act of writing it out can be really really helpful. Another thing that can be helpful I feel like is practicing gratitude. So even if things are going awful, you're having the worst day ever, try and find three things a day to be grateful for. Even if it's you painted your nails, you love the color of it. Or that you woke up today and you got to watch your favorite TV show. I think it's just important to recognize that there are some good things happening to you, right? It can be really, really hard on those really dark days, but if we can at least look at one thing that's going well, that can be really helpful. And then finally, I think I would say to that listener and all people is that we have to check our expectations. We may not get the result that we want or the “perfect result.” But if we're at least heard, that’s a step in the right direction.

40:10 Jill (Standing Up to POTS): Well, my first thing of gratitude today is that we have you to ask these questions of 'cause this was awesome. Dr. Gorman-Ezell, thank you so much for taking this time with us today. I know I'm kind of putting you on the spot, but could we invite listeners to write in other questions they might have about mental health and chronic illness for you?

Dr. Gorman-Ezell (Guest): Absolutely. I'd be honored to answer them. I've really enjoyed spending time with you getting this really important information out to the POTS community, and I am here to help in any way that I can. Thank you so much for having me.

40:47 Jill (Standing Up to POTS): Oh my gosh. Yay! Well, thank you so much. You are just such a fantastic expert to have on all of these things. So, OK listeners, please consider subscribing to this podcast because it really helps us get discovered by other people like you. And as always, remember this was never meant as medical advice. Consult your medical team about what's right for you, but thank you for listening. Remember that you're not alone. And please join us again soon.

41:19 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. © 2021 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 email volunteer@standinguptopots.org.)