E177: Gender Matters in Perceived Burdensomeness in POTS Patients with Dr. Cathy Pederson

Episode 177 November 28, 2023 00:43:34
E177: Gender Matters in Perceived Burdensomeness in POTS Patients with Dr. Cathy Pederson
The POTScast
E177: Gender Matters in Perceived Burdensomeness in POTS Patients with Dr. Cathy Pederson

Nov 28 2023 | 00:43:34

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Hosted By

Cathy Pederson Jill Brook

Show Notes

Perceived burdensomeness, feeling like a burden to friends and family, is common in POTS patients. This feeling can be a predictor of suicidal thinking, particularly in men. We can change feelings of burdensomeness - find out how in this episode!

You can read the transcript for this episode here: https://tinyurl.com/potscast177

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Episode Transcript

Gender Matters in Perceived Burdensomeness with Dr. Cathy Pederson [00:00:00] Jill Brook: Hello, fellow POTS patients and most appreciated people who care about POTS patients. I'm Jill Brook, your hyperadrenergic host, and today we are talking about some heavy but important topics, namely patients feeling like a burden and how that relates to chronic illness, gender, and even suicidal ideation. So this is a trigger warning that we'll be discussing that, and if it would be better for you, don't hesitate to hit pause and skip on to the next episode. But if you do wanna hear more about this topic, then our guest is Dr. Cathy Pederson, whom you know and love by now. She's our president and founder at Standing Up to POTS, who was also a neurobiology professor, pOTS researcher, POTS parent, and author of a peer reviewed study on this topic. In fact, when she presented these findings at a conference in Germany, her presentation was voted the best of the entire conference. So Dr. Pederson, thank you for being here today and sharing your findings. [00:01:02] Dr. Cathy Pederson: Thank you, Jill. Yeah, this will be fun. [00:01:05] Jill Brook: Yeah, so where do we start with this topic? What kind of background information do you want to give? [00:01:11] Dr. Cathy Pederson: Yeah. You know, I think we've done a couple of episodes on this. I've spent a lot of time in the last five years or so really thinking about suicidal ideation, specifically in chronic illness. And chronic invisible illnesses like POTS or EDS or chronic fatigue syndrome, myalgic encephalomyelitis, and it's a big problem in the community. And so in the POTS community, Jill and I actually found this sort of by accident, right in our first paper together where we were looking at quality of life issues. And I said, Hey, I really just wanna throw in a questionnaire asking about suicidal ideation and let's just see what pops. And it turned out to be the big finding of that survey. And so it's an issue. Depending on the study, about 50%, maybe up to 65% of people with POTS are at high risk for suicide, and I think the study that you and I did together, Jill, we saw that 15 to 18% of our participants had made an attempt They had survived it because they answered the questionnaire, so we're happy about that. And then 13% said that they were likely to attempt suicide in the future. So while this is not something that's easy to talk about and think about, I think it's really important. And it's a big issue, particularly for our youngsters, our young people with POTS. And that's what started my interest a number of years ago. My daughter was a young teenager at that time, and teenagers were making attempts, and some of them were making successful attempts for suicide unfortunately. So that's a long way around to say this really is an important issue and talking about suicide doesn't mean that people are going to make a plan or die by suicide and I think it's really important just to know what to look for as family and friends. [00:03:16] Jill Brook: And I would even just say that after having done so many POTS Diaries episodes, it is not uncommon for someone to say, sometimes off camera, that they did go through a phase where that was an issue but that they got over it and how glad they are that they did and that things are so much better now and so i just want to put out there that that's a really common theme that i keep hearing. [00:03:42] Dr. Cathy Pederson: Well and I think you've shared on the show as well that you had some very dark days and I don't know that you've quite said I was suicidal. But you talk about the fact that you're so much better now, look at all the things you're doing, right? There are so many people that love you, Jill Brook, for the things that you are doing on this show. But life didn't always look like this for you. And so it's important to try to keep battling and, and... Believing that something can help and will help. [00:04:15] Jill Brook: yep yeah so people are very much not alone if that's their situation. But okay so moving on with what you did [00:04:23] Dr. Cathy Pederson: Yeah, let me give you just a little bit more background here. Why is this that the POTS community is at such high risk? And there are other studies that have found that People that have multiple illnesses, so like POTS and EDS and MCAS and chronic fatigue syndrome, the more illnesses there are, the higher the likelihood of suicide. This is a community where there are many people that have many comorbidities. Chronic pain, independent of POTS, chronic pain has been shown to be... a predictor of suicide. And then sleep disturbance. And again, you and I, Jill, back in 2017, did a study where we found what, 96%, an incredibly high number of people that really had disturbed or interrupted sleep. And so when you think about what's going on with our community, this is really problematic. [00:05:18] Jill Brook: That was an independent predictor which was a little bit interesting and a surprise at least to me at the time but looking back i can kind of see it because the night is so freaking lonely and long when you're not sleeping well but yeah so sleep disturbance was a big one. [00:05:34] Dr. Cathy Pederson: It was a big one, and we wrote a separate paper on that. You know, because it was such a big issue. Here's what I think is super interesting. And this is what I love to sort of hammer when I'm out talking. So I come and talk to you, Jill, but I go out and speak in other places as well. And a lot of people think that suicide and depression are linked. But when you look at people with POTS, only about 50% of them have a mental health diagnosis. So something like depression or anxiety, which is about the same as the general population. And there was a study a few years ago that found that even though people Maybe half have depression or anxiety. It's mild to moderate depression. It's not that severe to extreme depression. So that's really interesting, right? It's not depression that seems to be important here. But when we looked, the suicidal ideation was in 65% of our participants. So people who are not depressed are thinking about suicide. And I think a lot of times what it is is a life weariness. They're tired of living like this in pain with people telling them that it's all in their head and not seeing the hope of tomorrow, right? It's not because they're depressed. It's because they're physically trapped in a body that's not working and we don't know how to help them. [00:07:08] Jill Brook: And to be clear, the suicidal ideation questions, I'm trying to remember, they had asked if at any point in your life you had had these feelings of suicidal ideation, it didn't necessarily mean that you currently had them, right? So when we talk about the 65%, it means that 65% at one point or another had had this, but it didn't mean that all 65% currently had it now, right? [00:07:34] Dr. Cathy Pederson: That's exactly right. Yeah, and that's a good clarification. And I think part of the point of this episode or these series of episodes where we've talked about this is that quality of life can improve, that you don't necessarily stay in that horrible spot, right? All things in life change, we just hope that they're gonna change for the better. And it does happen. And there's a lot of research that's going on now. So we need to continue to hope that we're going to find some of these things. [00:08:06] Jill Brook: I also can't help but point out that we had an episode about this, but you wrote a wonderful article talking about how the depression inventories for POTS patients are kind of confounded because a lot of the items asking about depressive symptoms also overlap with POTS symptoms. So, for example, poor sleep or poor energy count against you as a point for depression, but you could have those things as a result of POTS without depression. So if people are interested in that, I'd encourage them to check out that episode and that paper that you did. But it is fascinating that depression is not the main driver that you found. So can we ask what is? [00:08:51] Dr. Cathy Pederson: Yeah, we think what it is is actually something called perceived burdensomeness. But I wanna underline what you just said. And this is the meat, the crux of the talks when I go out and talk about this. When we think about depression, We think that a small percentage of people who are depressed are suicidal, right? Thinking about suicide, maybe making a plan for an attempt. But when we think about the people that are suicidal, we think that 100% of them are depressed. And what I'm here to say is in this community, in the chronic invisible illness community, that's not true. So it's something called perceived burdensomeness, which we'll get into more in a second, is a more important risk factor for suicide than depression. Then something called thwarted belongingness, then loneliness, and those physical factors like pain and sleep. And so this turned out to be the answer, this idea of perceived burdensomeness turned out to be the answer to the suicide question in this community, I think. So if you don't mind, I'd like to define this a little bit and talk about the theory yeah. So there's a theory that's called the interpersonal theory of suicide this is not my theory it's coming out of Dr. Thomas Joiner's lab in Florida but I think it fits our community really, really well. And so he has three pieces to his theory. Perceived burdensomeness is the biggest piece and that's the one that affects our community the most. And it's what it sounds like. People feel like a burden to their friends and their family. Maybe they need help with bathing or they can't go to the grocery store, whatever it is, they feel like a burden to friends and family. And we did a study that found that that was elevated in about a third of POTS patients. And again, the study that Jill and I did that sort of kicked a lot of this off early on found that 30% of POTSies who took our survey at that time needed help with personal care. So this might be brushing the teeth. It might be brushing your hair, it might be showering, could be eating. And then another study found that 25% of people with POTS are too sick. They're medically disabled and they're too sick to go to work or to school. And so we get this idea, right, that maybe they feel like a burden. They want to be out living their lives. They can't do that. They need help. So that's perceived burdensomeness. That's the first part of this theory. The second part of the theory is called thwarted belongingness. And I think every listener can relate to this to some extent, feeling like an outsider in a social group. Think back to high school. I know I'm super cool now, but not so much when I was 15, 16, 17. And so this idea that people don't feel like they're part of that social group, that was elevated in 71% of our POTS patients when they took our survey. Think about this. For many people with POTS, their illness decreases the number of opportunities that they might have to socialize in the first place. So again, my daughter is an example. She only went to school two periods a day for years in high school. She did not go to the dances. She did not go to the football games or the basketball games. So she had less opportunity, number one, but then her life experience was so different from other high schoolers, that even when they're together, it's hard to connect with them, right? A life of pain or a life of, you know, just feeling awful all the time or whatever the case may be. So those are the first two pieces. Perceived burdensome and thwarted belongingness. When people have both of those, they might develop this desire for suicide. They start thinking about suicide. The third part of this is something called fearlessness about death. And I think what happens in the chronic illness community is that life can be so miserable, so much pain, so much illness. Not getting the social support or the psychological support maybe that they need. The doctor maybe even is not believing them in the way that they should. And because they're so ill, the value to life may not be as high as it is to someone who's healthy. [00:13:43] Jill Brook: Mm hmm. [00:13:44] Dr. Cathy Pederson: And so this is an idea of life weariness. I just don't wanna live like this anymore. But it's a permanent solution, right? To what we hope is a temporary low. And that low can be low, I know. And it can feel like it goes on for a long time, but people do get better. And Jill is a good example of that, right? To hold on there. And so when you put these together, perceived burdensomeness, thwarted belongingness, and fearlessness about death, that's what can lead to those lethal attempts, to those completed suicide attempts, right? And I'm out talking about this because I want to avoid that. Because I'm scared to death for my own kid. For so many other teenagers with POTS, for so many others in their 20s, and we just need a better understanding of why it's happening in our community so that we can prevent it. [00:14:39] Jill Brook: So if I could just kind of summarize what you're saying, because it's interesting to me that I completely understand the fearlessness about death, if you have nothing to look forward to, it feels like, and everything is just difficulty and pain. The fearlessness about death makes a lot of sense. The perceived burdensomeness... makes sense and you know what strikes me is that it's such a selfless Emotion that you're not worried about your own pain and suffering there. You're worried about the pain and suffering that you perceive that you might be causing your loved ones. But the interesting one to me, the third one that thwarted belongingness. It's interesting to me that it implies that if you do find a community where you feel like an insider and a valued member, that that is so protective, and so it's it's interesting to me that those three are kind of The three that the value of just finding yourself as part of a community can be so valuable. [00:15:43] Dr. Cathy Pederson: I think that's part of the value of this podcast is that people are hearing stories of other people with POTS. They may not know them personally, but they're hearing that story and they're hearing people say, hey, I had low moments and you're good about bringing that out in those interviews. But I'm doing better now, you know, and this worked for me or that worked for me and it's really important. But I think the other thing is the Facebook support groups. If people aren't in a support group for POTS, join Facebook if you're not there already and join one of those groups. And if you don't like one, join another one. Standing Up to POTS has one, but there are many out there. And those are a great place to learn about POTS and what's worked for other people, to ask your questions. But then as you progress in the illness, to give support to others who aren't as far on that journey. And it can be a wonderful community to really decrease that idea of thwarted belongingness because those folks get it in a way that it's hard. And I don't have POTS, I'm a parent of a POTSie. And I I talk about it as I live with one foot in the chronic illness community. I've watched the struggles, but it's hard for me to understand completely because I don't have the illness myself. So I think being with other people who absolutely get it is really important, even if it's virtually. [00:17:09] Jill Brook: And it sounds to me like it wouldn't necessarily even have to be a POTS community or a chronic illness community. It could be any community that you really feel part of. Is that what's implied? [00:17:21] Dr. Cathy Pederson: Absolutely, this could be church groups, this could be a friend group that you've had since childhood or college or whatever, absolutely. It could be a strong family unit who is really there, so yeah, looking for those connections, don't deprive yourself of those connections, I guess is what I would say. [00:17:42] Jill Brook: You know what's interesting? Yeah. That's so fascinating. And I guess just something that I have thought about in life as I aged and this didn't dawn on me really until today bringing it to this topic, but I was kind of you know a geeky young person, didn't have a ton of friends, was not popular and When I got to college, I kind of found a group that I really clicked with. And then later on, I felt like maybe I didn't have that again. So throughout my life, I've had very noticeable times when I felt like I had found my people and very noticeable times where I lacked having found my people. And it wasn't until I was in my 40s that I realized how much better life is when you feel like you've found your people. And now I realize that this is so huge that it is, you know, part three of a three part piece of the interpersonal theory of suicide. And so I almost feel like they should teach that, you know, in school, one good goal in life is find your people, whatever community that might be, that's worth it to spend time and energy to go looking for that and finding it. And I know for me, it took a long time, but it's so worth it. [00:18:58] Dr. Cathy Pederson: I would agree with that 100%, I think it's really protective against suicide and death. Increases just happiness and emotional health and physical health can't be far behind, right? When we're happier, maybe we take better care of ourselves and maybe we feel just a little bit better. Absolutely. [00:19:17] Jill Brook: Interesting. So can you talk more about this perceived burdensomeness? Like, how do you measure that? [00:19:24] Dr. Cathy Pederson: Yeah, there was a questionnaire that we used. It's called the Interpersonal Needs Questionnaire. It's really short. And only takes a few minutes, so it was one of many surveys that we were giving folks during the study. and I ought to say this was a fairly large study. I think we had over 700 people in this study that had POTS, they had chronic fatigue syndrome, they had Ehlers Danlos syndrome and mast cell activation syndrome. And when we looked at that group, we found several things that actually predicted perceived burdensomeness. And remember what we said was perceived burdensomeness was the biggest indicator of suicidal thinking or action. And... What we were sort of surprised by is that the largest predictor was actually male gender. And so I think a lot of men, particularly in the POTS community, feel under acknowledged and undervalued because you look at the ratio and it's about 80% women, 20% men. And so men often feel like POTS is a woman's problem. It's a woman's disease, right? Because of those numbers. And they may even hear that from friends and family or from medical professionals. And so male gender predicted that perceived burdensomeness, which again is linked to suicidal behavior. What we also saw was as people piled up the diagnoses, so as they had more total diagnoses, which often honestly means that they have increased illness. They've got a high symptom load as a result of that. Those two were also indicators or predictors of increased perceived burdensomeness. So what I thought was really, really interesting, though, is that we also found statistically that some things were protectors against perceived burdensomeness. And that's what I'm interested in, in a lot of ways, right? So one is increased age. The older people with POTS get, the less likely they are to feel like a burden, maybe because they've found their people. maybe they've got a nuclear family that's really taking care of them and doing it Maybe they've learned better coping skills over time. Whatever the reason, as people get older, they're less likely to report this perceived burdensomeness. [00:22:06] Jill Brook: Can I give a third reason why with age? One thing I've noticed is as you age, Other people are collecting more diagnoses and more health issues also which is horrible and so sad but you feel less alone as the people around you start sharing that they're dealing with things also and you realize, oh, having health issues is actually not rare anymore. [00:22:31] Dr. Cathy Pederson: Yeah, I think that's a great one. That as you get into your 40s and 50s and other people start to develop diabetes or they're developing heart disease or getting cancer, that you don't feel so different and you can talk about your health woes in a different way. Yeah, I think that's absolutely right. The other two protectors, I think everyone could probably guess. So psychological health, people that had good psychological health did not report perceived burdensomeness or high levels of it. Same thing with social relationships. So that goes back to what we were talking about with that thwarted belongingness. But people that had strong social relationships did not report those same high feelings of perceived burdensomeness. What this means though... If we think for a second, who's at most risk in our community, it's young men. So teenage boys, and those in their 20s are at the absolute highest risk for suicidal behavior of all people with POTS. And so we need to be really paying attention to that and not minimizing. And finding a healthcare practitioner that's really going after some of these symptoms. I'd say young women as well. If you actually just look at what the statistics said, those young people, we've got to be really, really careful. and validating for them. [00:23:59] Jill Brook: Yeah, absolutely. And so... So increased age, that's encouraging that, that's a protector 'cause everybody's headed that direction. [00:24:09] Dr. Cathy Pederson: That is right. [00:24:10] Jill Brook: social relationships, that's something we can all work on. And to meet more people, make more connections. Psychological health. That one also is interesting to me 'cause I guess we can all work on doing the things that we always hear about that can help. Things like being more grateful eating our vegetables getting more sunlight you know things like that is that what we're talking about in terms of psychological health being protective? [00:24:40] Dr. Cathy Pederson: Yeah, and I think it's often tied to those social relationships, right? If you're being validated in your life, if you have people that believe you, if you are maybe in counseling, maybe not for depression, but to deal with all of the other things that are going on. It's like the ground shakes, you know, there's this earthquake and you fall into this other world. And it takes a lot of coping skills to really deal with that. So it might be having a good counselor who really understands chronic illness and can help people through that. So being optimistic, looking for the bright side of things, all of those things can be helpful. [00:25:17] Jill Brook: Okay so can we talk more about this gender difference and why that might be present? [00:25:24] Dr. Cathy Pederson: Absolutely. This is a really important finding, I think, that that perceived burdensomeness, again, was higher in men than in women. And I think there are a number of reasons for this related to our idea, our social construct of masculinity. And there was a study, very interesting, looking at masculinity in men who were chronically ill. So, they asked chronically ill men what their idea of masculinity was. And I think it's very similar to what many men would say. It was physical strength. It was being able to financially support your family. It was being invulnerable, that Superman sort of thing, right, that they can do it all. And then autonomy, being independent and able to, again, sort of do what it is that they need to do. If we think about POTS in men, most of these may be taken away. The illness itself means that you are vulnerable, right? And for many men, that physical strength wanes. And depending on stamina and what symptom load they have, being able to work may become a struggle, and so not being able to financially support that family, and then perhaps loss of independence. And so one thing that I would suggest is as a society, we need to change the narrative on gender roles in the first place. So let's redefine what it means to be masculine. Maybe it's someone who's really loving and caring about the people in their life. And I would suggest that the more that we can move away from the man must be the breadwinner, sort of this caveman idea, the better it's going to be for men who develop a chronic illness like POTS. Because if you're not defining yourself or society is not defining you or your masculinity based on your physical strength and your ability to make money, then you can focus on doing what you need to do to get better. You lose some of that blame game or that guilt for not being able to do the things that maybe you could do before. [00:27:46] Jill Brook: So what I'm hearing you say is that the men have an additional hit on top of what other POTS patients have because you know all genders will experience a lack of autonomy when they get a chronic illness. They'll become more vulnerable. They'll have financial challenges they'll probably have their physical strength diminished somewhat if they have POTS. But i think what you're saying is that for a woman Even though all of those things really stink, it does not also diminish how they feel about their gender role, whereas men have all of those lousy situational things, plus it hits their masculinity. [00:28:32] Dr. Cathy Pederson: That's exactly right. So a woman who's sick is no less feminine, but a man who is sick might be perceived as less masculine. And that's not fair. That's not right. We need to change the way that we think about that and we talk about it. And again, I think just being aware that this is an issue, this perceived burdensomeness, the great thing about it is it's perceived. We can move the needle. We're talking about the way that people are feeling. It's easier to change perceived burdensomeness than it is to change depression. And that's what I love about the findings of this particular study. [00:29:12] Jill Brook: Excellent. Okay, well, let's move on to that. What can we do about it? [00:29:17] Dr. Cathy Pederson: So, I think there are a number of things we can do. I think we've got a number of healthcare practitioners that are listening to the show now, and I would encourage them to screen for perceived burdensomeness during their visits. I know for my daughter, many times we get handed a tablet and you fill out all these questions, or sometimes it's still paper and pencil but not very much anymore. Throw in something. A short questionnaire on perceived burdensomeness, or on suicidal ideation. Now, a lot of practitioners don't want to do that. They're worried that they'll be liable. But the fact is that you need to have that conversation. Get them to counseling. And again, it's often not depression. A depression scale is not going to help us here. Because most people with POTS are not depressed, and if they are, it's a mild or moderate case. It's not that severe to extreme case that would lead to suicide by itself. So I think that's one piece of it. I think another piece is to get folks with chronic illness into counseling. I think this is actually critically important. And again, it's redefining how we think of this. Counseling is not just for people who are depressed or anxious. And my own daughter is so nice about letting me share all sorts of things. But she was in counseling with a fabulous, fabulous therapist for years, not because she was depressed because she never was. Not because she was anxious, because she never was. Not because she was suicidal, because she never was. But man, she was a middle schooler whose world had shifted. And she needed to learn new coping skills to deal with her new reality at school, at home. She's in college now, right, starting to think about graduation and employment. But there are all these things that have to be navigated in chronic illness that just aren't a thing for those of us that are healthy. And to get more tools in the toolkit, I think is really important. And I'm a big believer in this. I saw how much this helped my own daughter, and I'm a big proponent of it for anyone who will listen. And I have to say, my kid did not want to go. I'm not a big briber in parental situations, but she was 10 or 11. She was, you know, young, and I really thought we needed to do something. And so I said, if you go three times, I'll buy you a video game. That works with teenagers, right? And we were lucky, we found the right therapist the first time. But after that first session, she's like, you were right, mom. I do need this. And I bought her the video game and she kept going, and it was wonderful for our family. So I would really encourage folks to shed that. We're not talking about mental illness. We're talking about coping skills. We're talking about living with a new reality. And that can change that perception of a burden. It's a perception. I think family can help. My daughter has been sick for more than 10 years and I am not perfect. My girls will tell you, I am not perfect. I try hard to be a good mom for them, but I am not perfect. I do think though that family structure can decrease this perceived burdensomeness. Allow that child or spouse or parent to be independent and autonomous when they can. Maybe they're having a good day and they want to cook dinner. Let them do that. Don't fuss over them. Or if they're not very brain foggy that day, let them make those decisions. You know, let them have that autonomy when possible. And when assistance is required, try to do it gently. And again, I am not perfect. I doubt that your husband is perfect. It sounds like he's pretty superhuman, but I doubt he's exactly perfect, right? None of us is perfect, but the intention, if your intention is for good, I think that goes a long way. And so sometimes families don't know how to do this. And so maybe having the whole family go into counseling can be helpful. [00:33:47] Jill Brook: Yeah, absolutely. And I know what my husband would say right now, and he would say that he is a big believer in the value of humor, specifically for making a patient, I guess, i. e. me, because I'm his experience, but he really tries to show humor whenever possible because he has noticed that if he's making jokes then i don't feel like a burden because i'm saying oh we're not having a bad time here and oh this person's not overwhelmed. i'm not putting them in a bad mood and so i know that's what he would say. For anybody even just an attempt at humor even if it's not a good one just showing that you're in a mood to try can Can probably transmit your intentions to have this be a not heavy thing. [00:34:36] Dr. Cathy Pederson: Absolutely. I mean, anything that just shows that you care, that you're there, that this is not a big deal. I can't believe you need me to bring you more Gatorade. That doesn't help. It's not gonna make them drink the Gatorade that they probably need. It doesn't make you feel better. And it doesn't make them feel better, right? Now, some days, you know, you're not perfect, but that intention to do good and to do it gently I think is a really good thing. And then I'd say maybe not so much for teenagers, but for those that are in their 20s and above, career retraining might be necessary. We have so many people that are joining the POTS community, unfortunately, right now that are older, that got it from COVID, you know, they're part of that long haul syndrome, or from the vaccine, or from other illnesses, my daughter got it from mono, COVID's not the only one that can do this, but finding a career path that's more sedentary, Where you can sit down. So I'll use my daughter as an example. Again, she is a senior in college and she chose to major in computer science and cybersecurity. And she did that very intentionally because that's a job you do sitting down. You don't do that job running all around the building. There may be a little bit of that, right? But mainly you're sitting at your computer and you're putting up the defenses and you're testing them and you're doing all these things. You're problem solving. And so she was really intentional about that. For people that have a more active Job before they get sick, they may need to think about ways that they can work hybrid. So she worked this summer. It was great. She was three days in the office and two days still working eight hours, but able to do that from home. And I think we all know that that's huge. That flexibility is huge for people with chronic illnesses like POTS. So something, some kind of accommodation, career change that allows them to do something that's fulfilling but not completely obliterating, I think is really important. [00:36:51] Jill Brook: Yeah, what is that meme you see online, the Icky Guy, where you find what you're good at, what you love doing, and what the world needs? And I would say that for people with chronic illness, there's a fourth dimension, which is what your body will tolerate. And I think it's a lot of work to find those things. I think there's a lot of research to be done, and then trial and error, and the error part of that is never fun. But eventually you figure out what does work for you, and you can bake that into a routine. And I really feel like that is when things get better and easier and happier. [00:37:27] Dr. Cathy Pederson: Yeah, yeah, I would agree with that 100%. [00:37:30] Jill Brook: So, okay, if we were gonna summarize, [00:37:34] Dr. Cathy Pederson: Yeah, if we were gonna summarize this, again, the big finding in this study, Which has really made me feel like I'm done thinking about suicide and studying suicide professionally now is that perceived burdensomeness is the leading predictor of suicidal behavior in the POTS community, and it's more important than depression. It's more important than that thwarted belongingness. It's more important than loneliness and physical factors. And that we can move the needle on perceived burdensomeness. This is the way that I feel. I can change the way I feel. You can help me change the way that I feel as a burden or not as a burden. And so I think that's a very exciting finding. There's a lot that we can do individually to try to decrease that perceived burdensomeness. The second big finding, men are at higher risk for perceived burdensomeness than women. And it's not that women don't develop this, I'm not saying that, but for men, it's crushing. And it may go back to those gender constructs that we talked about, the idea of what a masculine man looks like. And we need to change that, right? We need to change that view. And then the third thing is, and I guess I said this just a second ago, but I'm going to say it again. This perceived burdensomeness is something we can move the needle on. We can decrease suicidal behavior in our community by helping to build Coping skills, whether that's talking with someone that we know and love, whether it's a counselor, whether it's just a wise person in our life, whether it's someone in a Facebook group, develop those coping skills to deal with that changing reality that comes with illness. Taking a look at family life, how are you doing personally? Are you being as supportive as you can? Look at the entire family. Do we need some family therapy to change some of our behaviors to help our loved one? We don't want them to die by suicide. This is a life and death thing that we're talking about. And then that idea of career retraining, if feeling like I can be independent and I can work. And financially support myself and my family is important. That career retraining is a really important piece of that. And even if they can't work full time, if they can make enough to make ends meet, work part time to help the family, that can be huge as far as psychological health. And so, yeah, so this, I think, was really the pinnacle study, and we all need to be working to try to decrease that feeling of burdensomeness for our loved ones who have POTS. [00:40:26] Jill Brook: Amen. Well, Dr. Pederson, thank you so much, as always, for being such a good teacher, doing this amazing research, presenting it all over the world, and then letting us learn from you about it. Do you have any final words for people? [00:40:43] Dr. Cathy Pederson: You know, I think hope is really... Important. And hopefully your hope springs eternal. I think there is so much research that's going on. Jill talks about it occasionally, Standing Up to POTS is, funding it, other organizations are funding research. NIH now is funding Long COVID research and POTS is part of that. And so I think there is hope now in a way that there was not 10 years ago. I think there is more online help. Again, check out our website. We have so much great information. And I was actually on sabbatical last spring. So I wrote a ton of new pages. It's up to date. Things are looking really strong there, check that out. There wasn't that kind of information on the web 10 years ago. And so I do think that we're in a better place and as terrible as it is that COVID has, again, brought so many new POTS patients to our community, the silver lining is that people are finally taking notice. And I hope that a lot of those treatments will generalize to you and to my daughter and to other people who have been sick for a decade or several decades. So I do think that there is hope out there. And so finding a way to hang on for tomorrow and then the day after that is really important. We love you. We need you here, right? We all serve a purpose in our lives. [00:42:11] Jill Brook: Amen. Well, hey, listeners, we hope you enjoyed this episode. We've got more coming next week. But until then, thank you for listening. Remember, you're not alone. We love you. And please join us again soon.

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