Episode 15: Quality of Life in POTS Patients

Transcript

00:00:01 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.

00:00:28 Jill (Standing Up to POTS): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook, and today we are talking with Dr. Cathy Pederson about her research findings on health-related quality of life. You may recall that Dr. Pederson is a neurobiology professor, a POTS parent, founder and president of Standing Up to POTS and she is an academic researcher who studies quality of life issues in patients with chronic illness. I have assisted her on a couple of these studies, which we'll discuss today. Dr. Pederson, thank you so much for being here today.

00:01:03 Dr. Cathy Pederson: Thank you for having me.

00:01:05 Jill (Standing Up to POTS): So in preparing for today's discussion, I wanted to remind myself of the technical definition of health-related quality of life. And there was a wide range of different definitions. Some are pretty simple and some are very long and detailed. But do you have one that you like to use as we discuss this today?

00:01:26 Dr. Cathy Pederson: Yeah, I think quality of life is one of those things that you recognize when you have it, you miss it when you don't. But I think there is a way to think about it where you think about your standard of health and are you healthy enough to do the things that you want to do in a timely manner? Are you comfortable while you're doing those things? And in some of our previous episodes we've talked about orthostatic intolerance and how painful and uncomfortable it can be to be upright. And then the level of happiness. So I think quality of life is all of those; it's health, it's comfort as you're living through your life and happiness.

00:02:02 Jill (Standing Up to POTS): So it basically sounds like the Holy Grail of any living thing, so this sounds like one of those topics where if you even need to have the in-depth discussion, it's kind of a bad sign. So do we need to warn our audience that we'll be discussing some rather heavy findings today?

00:02:22 Dr. Cathy Pederson: I think we should. While, I think it's a really important topic and, personally, I think quality of life is sort of the Holy Grail for this community, we are going to be talking about decreased physical functioning. We're going to be talking about social isolation, and we're going to be talking about risk of suicide. And, you know, there's no way to really sugarcoat this. We know that there is a higher risk in people with POTS than there is in the general population. And so, while we don't want to alarm people, we also want to have an open, honest conversation about these issues to try to prevent our POTS community from harming themselves or having people die by suicide.

00:03:09 Jill (Standing Up to POTS): Yeah, absolutely. So, OK audience, we just want to be clear. This is a trigger warning. We will be discussing some findings about pain, depression, loneliness, suicidal ideations, and suicide risk. If it would be unproductive for you to hear this discussion right now, then please just skip to the next episode and know that Standing Up to POTS is aware of these issues in the POTS community and we're working to improve quality of life for today's POTS patients. But if this is a conversation for you, welcome, and let's get started. Where do we start with this, Cathy?

00:03:50 Dr. Cathy Pederson: You know, after hearing what you just said, I think I ought to mention why I'm interested in this. And you know, and a few years ago, shortly after my daughter was diagnosed with POTS, I was in a lot of Facebook support groups and really just trying to figure out what's going on with POTS like so many people are. And there were people that, in some of the parents groups, that were having to take their children to a mental health facility because they had just made an attempt on their life. There were some people who had completed suicide, meaning that they had died by suicide in the community, and it really shook me to my core. And so I spent the last four years really doing academic research trying to understand quality of life in POTS patients and people with other chronic invisible illness, and then figure out why the risk might be higher. And while I don't think we have all of the answers, I think we have more than we did when you and I launched this study four years ago, Jill.

00:04:54 Jill (Standing Up to POTS): Yeah, and I think we were a little bit surprised by what we found.

00:05:00 Dr. Cathy Pederson: We were absolutely surprised by what we found.

00:05:04 Jill (Standing Up to POTS): Yeah, so maybe it's time to stop with the suspense. OK, so let's just start with POTS symptoms. How does that tie into health-related quality of life?

00:05:16 Dr. Cathy Pederson: Right. So when we're thinking about quality of life, part of it is that that health: are you healthy enough to do the things that you want to do? And we know that lots of people with POTS have poor physical health. And we know that there's a spectrum. Some people do quite well. Some people are in the middle, some people are medically disabled. But, we've talked about in past episodes things like the orthostatic symptoms - that when you stand up you feel worse, that dizziness and lightheadedness can be problematic. About 40% of people will faint. They call that syncope. We've also talked about pain and that there are different kinds of pain that different people with POTS experience. So some have neuropathic pain, others may have headaches. They may have abdominal pain and that can be related to nausea and vomiting as well. And then there's hypersensitivity that could be to light, it could be to sound, it could be to touch. But it's more than that, right? One of our other studies that Jill and I wrote a paper together was on sleep efficiency. So if you go to bed for 8 hours a night, how many of those are actually in good sleep, restorative sleep? So we know that people with POTS have issues with sleep. And then people have chronic fatigue syndrome as a comorbid diagnosis. We know about that brain fog. I think we've talked about a lot of these before, Jill. Heart palpitations and tremors. And you put all of this together and it can cause physical misery, right? You're not feeling great, and you go to the doctor and if you get a diagnosis quickly, and we hope that everybody does, but that's not a reality for many at this point, that the treatment is still hit and miss. And unfortunately, at this point, while there are medications that are prescribed for people with POTS, none of them are approved for POTS by the Food and Drug Administration, the FDA, and so we don't have anything that studied these medications and said, yes, this is appropriate for people with POTS. If you put those two things together, where you've got all of these symptoms, that can make things miserable physically. And you go to the doctor and the treatment is not very effective, or they're trying different things all of the time, what the person is left with is poor physical functioning or decreased physical functioning. For my daughter, that was she had trouble getting to school. There was a study in 2002 by Dr. Benrud-Larson and her colleagues that found that 25% of POTS patients were so disabled that they were unable to attend, work or school. (Transcriber’s note: you can find the abstract for the Benrud-Larson study here: https://www.sciencedirect.com/science/article/abs/pii/S0025619611619952)

00:08:05 Dr. Cathy Pederson: Let me say that again 25% of POTS patients were so disabled that they were unable to work or attend school. My daughter fell into that group. She did go physically to school for two periods a day, maybe an hour and a half. And she was done. That was all she could do. And of course there are people on the other end of the spectrum. I'm not suggesting that everybody is that poor in their physical functioning, but it is an issue for some. In that same study, they gave people with POTS a standardized test. It's called the Short Form Health Survey. Nobody cares. But they've given it to lots of different people with different kinds of health problems. And so in this study what they found was that the POTS patients when they took this same survey scored at about the same level as patients with congestive heart failure, where they are really debilitated and maybe some of you know someone with congestive heart failure, and so they don't have much stamina, they get short of breath very quickly, really impacts quality of life. And then also the POTS patients were similar to people that have chronic obstructive pulmonary disease, which people maybe have seen on commercials. They call it COPD, but that stands for chronic obstructive pulmonary disease. So that's like emphysema. And so again, can be very debilitating if you know someone that has emphysema. There was another study in 2011, Dr. Bagai, and his group that found with that same survey that POTS patients had about the same quality of life as those with rheumatoid arthritis. Very, very painful. This is an autoimmune disease that attacks the joints, very painful. And end stage kidney disease. These are the people that are on dialysis. And so the point of this paper is that their quality of life was really, really low. (Transcriber’s note: you can find the abstract for Dr. Bagai’s paper here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3077350/)

00:10:05 Jill (Standing Up to POTS): Yes, and I remember seeing a paper at some point talking about how sometimes the severity of a disease and how deadly, for example, it is, is not necessarily correlated with how much it impacts your health-related quality of life. And rheumatoid arthritis was their example of something that doesn't end your life, but it is painful, almost every hour of the day. Every time you try to stand up or sit down or go to the bathroom or reach for something. And that had made me think about how, for many of us, dysautonomia is the same thing in that it's constant. There isn't really too much time in the day when you don't want to have your automatic functions working for you. But my other thought was there are a lot of different ways that researchers have measured health related quality of life. And when I see that POTS is comparable with congestive heart failure or COPD, or arthritis or end stage kidney disease, I don't know anybody with those diseases, so that's a little tough for me and I just wanted to mention that in our studies we had used a CDC measure that I think is a little bit more easy to understand, which just asks “how many days of the last month have you not been able to do what you wanted to do because of pain, because of physical dysfunction and things like that?” So it was, “how many days of the last 30 were you unable to live your life the way you wanted to?”

00:11:51 Dr. Cathy Pederson: Absolutely. I think the point of this really is that a lot of people look at someone with POTS, and it's an invisible illness, and so they say, “oh, they look fine.” You know, maybe they their hair is fine. It's not like in cancer where they lose their hair or there may not be big shifts in their weight, so they're not seeing that like you might see with steroids with weight gain, or you might see with other sorts of disorders. Cancer is an example where they lose a lot of weight. And so the idea that it's invisible can really be problematic I think for folks in our community. And even though that person may look fine, they could be dizzy. How can I look at you, Jill, and know whether you're dizzy at this moment or not? I really can't, unless you're stumbling, you're walking down the hall and you start shifting around, I really can't tell. How could I look at someone and know if they're nauseous or if their eyes are hypersensitive to light? And so this is the problem that we have both for friends and family who love that person, but also for the health care practitioners that we're hoping will diagnose. They can't look at that person and accurately assess their level of fatigue. And we don't have words, I think, many times to describe the level of fatigue that some POTS patients have. What does neuropathic pain look like? My daughter had a doctor ask what kind of pain she had in her legs, and she was little. She was 10 or 11. She was reading Harry Potter and in Harry Potter there was a snake. I don't remember which volume it was, but there was a snake. And so she talked about it felt like snakes biting up and down the leg. And instead of that doctor smiling and just nodding and going with it, they said, “well, how do you know? Have you ever been bitten by a snake?” And so it's that kind of disbelief, I think, especially for these physical symptoms that we don't have a good way of quantifying, that can make this very difficult, and so friends and family may say, “Ah, you look fine. I think it's nothing. You're making a big deal out of nothing. It's all in your head, right?” Health care practitioners may do the same thing. They run the blood tests. They run imaging, they do urine testing. And everything comes back clean, as it often does in POTS, and they diagnose them with depression or anxiety and those medications and treatments don't really help because that's not what the problem is. So I think the invisible nature of POTS is actually a big problem when we talk about quality of life.

00:14:40 Jill (Standing Up to POTS): You know it's funny because my POTS was so invisible for a couple of decades and I of course had trouble, as many patients do, getting it taken very seriously. But when it finally got bad enough that I was fainting fast and hard, I had one day where I had a bit of blood 'cause I'd hit my head when I when I fainted and to me it was just another day of POTS, but that was the day that the world opened up its kindness to me and everybody was so concerned and so attentive. And so wanting to know what they could do for me. And I remember thinking, “Oh, this is what it feels like to have a visible problem.” And even though you know I didn't remember hitting my head, it didn't hurt anymore, but there was, you know, a decent amount of blood. And I soaked it up and I told myself I'm going to enjoy it and tell myself it's making up for the last 20 years of nobody noticing or caring. But it's amazing how a few visual cues make the difference between other people thinking that you might be just a lazy faker, or that they should drop everything and attend to your every need. It's just amazing.

00:15:55 Dr. Cathy Pederson: What a shame that you have to have blood show that you have to have a cut on your head. Your symptoms were the same before the cut as they were after and what a shame it is that it is the case, but it is. I think that's right and that's what's so difficult, I think, is to not be taken seriously, when you know that you're not well. And then you question whether you're wrong because nobody believes you. And I hope if you asked my daughter, she would say, “I always felt like my mom believed me.” I hope that that's what she would say, but it's tough. It's really tough for lots of folks. So Jill and I teamed up a number of years ago to really look at this issue of health-related quality of life in POTS patients and we did an online survey and we have had 624 people with POTS who took the survey for us and 139 controls and some of you listening may have taken that survey and we really appreciate that. I put surveys out every once in a while and we publish a lot of papers that we're trying to use to push the POTS community forward, so thank you to any of you listening who have taken the survey. And I don't know, Jill, that we need to talk about the specific tests that we gave but let me just say that we did use standardized, validated tests that have been published in the literature and have some reference points so that we have some idea of what the results would mean. So Jill was talking about before the healthy days core module out of the Centers for Disease Control, and that's the test that was looking at what it was going on as far as quality of life in the last 30 days for that person. So in the last month, approximately how are you doing? And what we found was that people with POTS had significantly more days of poor physical health. No surprise there, right? We knew that that would probably come in. In fact, most people had poor physical health more than 20 days out of 30. The people with POTS also had fewer days of good energy than the controls. Again, no surprise. We know that lots of people with POTS have fatigue issues. They have sleep issues. Some of them have the comorbid diagnosis for chronic fatigue syndrome and or myalgic encephalomyelitis, so we know that energy was going to be lower. There was no surprise there. The surprise, Jill, for me, or one of the surprises, was that 97% of the people with POTS reported activity limitations, meaning that they couldn't do everything in the normal day that they wanted to do. Ninety-seven percent. And what was really striking about this is that we were looking at a sample of young women. The youngest person was 18, but the mean or the average age was 34. So we're looking at people that are in their late teens or 20s or 30s, their 40s, some that were older than that. But the average age was 34. So 97% had activity limitations. What I found shocking as we broke those numbers down, is that 76% of these relatively young women needed help with routine chores. So that could be like cleaning your house, maybe dusting or vacuuming, or putting the dishes away after dinner. It could be shopping, standing to shop, standing to cook the food that you're that you want to make for that meal can be really problematic. So 76% needed help with these routine chores. And then what really got me - and then I'm going to pause Jill and let's talk about this a little bit - is that 30% of our sample needed help with personal care. That's eating, bathing, with dressing themselves, and moving around the house.

00:20:23 Jill (Standing Up to POTS): And I think what can feel so horrifying, at least it did to me, is to be so young with these issues, I have found at least. Just as I age with POTS one thing that does get a little bit easier, it's not a positive, but as I age and all of my peers in my family age, more people have something and I always knew intellectually that everybody’s got something. But when you're 20 and you have some of these issues, it is horrifying to think that, you know, the image you had of yourself as a 20 year old woman was so far from what it is when you need help to do some of these basic things. And I think that is part of why it's so extremely tough, along with not being believed. I think that, you know, there's the part of the suffering that comes from the illness itself, whether it's pain discomfort or not being able to do what you want to do. But then there's a whole big part of the suffering that is 100% just people’s reaction to it and that's the part where awareness alone can alleviate so much suffering. And so that's where I get really excited about publishing these studies with you and doing some of this work because I understand that it's going to take a while to change the biology and the medicine to get the answers to start to solve that part of the suffering. But I feel like with good awareness with the snap of the fingers, that aspect of the suffering can just disappear.

00:22:03 Dr. Cathy Pederson: I think that's right and we have a lot of work to do there. There can be subtle changes in a family’s life that could make a huge difference for that POTS patient. And so I hope we have families that are listening to this today who love someone with POTS and are saying, “How can I help?” And we're going to end with that: some ideas of what a family member or a friend or a healthcare practitioner can do to really help improve the quality of life, even if we can't decrease the pain, even if we can't make the orthostatic symptoms go away, there are things that can be done and I agree that is the exciting part of this. We also looked at pain in this study. And again, we gave a pain scale that's designed for this and I think that no one will be surprised to find that the people with POTS had more pain, higher pain severity, than people in the control group, and they also had more days with pain than people in the control group. And so we're not talking about an occasional headache for most people with POTS or “I stubbed my toe.” We're talking about real pain, intense pain, that really can be disruptive to their life and decrease quality of life. We also looked at sleep. But what we've found there, and again, I don't think that this is going to be a surprise for our listeners, our POTSies that are listening - 98.4% of people with POTS had poor sleep quality. They reported that their sleep was disrupted in the middle of the night or that they had trouble falling asleep, or that they had trouble with waking up early and not falling back to sleep, or all of those. So I think many people can relate to this problem with sleep. And then the flipside of that is if I'm not sleeping well at night, then I'm going to have more daytime fatigue. I'm not feeling like myself during the day. Do you have any sleep issues that you'd be willing to share, Jill?

00:24:10 Jill (Standing Up to POTS): Yeah, I think that sleep is the hardest part of this whole thing for me, even worse than pain, because when you don't sleep well, you don't regenerate. And at least for me, when I was in my darkest moments, it got to be where getting through the day is very difficult 'cause you have pain and dysfunction and all that, but then you make it through a day and now you just you don't have sleep to look forward to. Instead, the thinking is, “Oh, geez, now I gotta figure out how to make it through the long night. And when the night is over now I gotta make it through the long day,” and I really struggled with that. And I know that some of the dysautonomia experts talk about some of the vicious cycles between pain and sleep, between pain and mood, or mood and sleep. And, well, our research showed that this can be a really insidious problem, but I just want to stick for a second on that number. 98.4% of POTS patients had poor perceived sleep quality. So, you know, that means a couple people are sleeping well and I'd like to hear from them. Maybe they can share their secrets, but I think that's a big one. And I guess that kind of brings us to what we found connected to that.

00:25:27 Dr. Cathy Pederson: Right. So sleep - when you don't sleep well, and even if it's just a night or two unrelated to POTS, so for our families that are listening - you just don't feel right. You don't think right. There are all sorts of things that is sort of a cascade effect when you don't get a good night's sleep. (Transcriber’s note: trigger warning – the speakers are about to discuss suicidal ideations. If this is triggering for you, please skip this section.) And one of the things that can be tied to poor sleep is suicide. And so when we were looking and thinking about how we wanted to put together a survey to look at quality of life, we knew anecdotally that suicide was an issue in the community. And so we decided to put in a questionnaire - it's called the Suicide Behaviors Questionnaire - to just see if it was really a case here and there, or if this was a real problem for the POTS community. And what we found was shocking. The answer is it's a real problem for the POTS community. So in that group of over 600 women, 47.6%. fell into the high risk group for suicide on that particular measure. So let me say that again: of the more than 600 women that filled out our survey, 47.6% fell into the high-risk group for suicide. We couldn't believe it, right? I mean, I know, Jill, I was shocked and you were even more shocked I think by that finding.

00:26:58 Jill (Standing Up to POTS): I was and I'm sensitive to the fact that this was not a random sample. This was an invited survey of people who follow Standing Up to POTS, and so it's possible that maybe it's the more severe POTS patients that took the survey. We cannot know. But in my mind, it doesn't matter if 47.6% are in the high-risk group, whether it's the entire POTS population or only those severe ones, or only the ones following us. That's still a really high number.

00:27:31 Dr. Cathy Pederson: Yeah, and at that point we were thinking that the underlying cause for that suicide risk had to do with chronic pain and insomnia. And certainly there's a fairly large literature that would talk about that, and so that's what we really thought in the beginning, and we had done the pain work we had that in our survey and we looked at sleep issues in that survey as well. But as I said, I've really done a lot of work on this issue in the last four years or so trying to protect my daughter, trying to protect other people’s daughters, their spouses, their parents, their sons from suicide and trying to understand what's going on there. And I just did a survey probably a year ago now and we're really working through that data and we're finding some really interesting things that I hope we're going to get published here pretty quickly. And one is that a predictor for suicide risk and for people being in that high risk group for suicide, is something called “perceived burdensomeness”. Now I have to say this was a term that I didn't know very much about before I sort of fell into this research to be honest. I didn't really go looking for it. I feel like this is where I was supposed to be. But perceived burdensomeness is sort of what it sounds like. If I have POTS, or a better example would be my daughter who does have POTS, if she feels like she's a burden on me, or her sister, or her boyfriend, or other people in her life that increases the risk of suicidal behavior, of thinking about suicide, talking about suicide, and maybe making an attempt. So this idea of perceived burdensomeness is really, really important. “Do I feel like a burden?” Or “Maybe I'm sick, but the way that things are going in my home with my family with my significant other, I don't feel like a burden. I feel like I'm contributing in the relationship, maybe in different ways." Now, what I've been really surprised at, and I've done a couple of surveys and we've seen the same thing, is that depression is not a big indicator. This is shocking. So perceived burdensomeness was actually more predictive of suicide risk than depression. Now that's - I want that to sink in, right? That seems crazy. We often think that when people are depressed, they may be suicidal. And certainly if we think about the people that are suicidal, we assume that they're depressed. But what I'm here to say is, in our community, in the chronic invisible illness community, I don't think that's true. I think that perceiving yourself as a burden is a better predictor of suicide than depression. Same thing with hopelessness. My daughter has started to say, “I don't want to see another doctor. I give up,” and I've dragged that poor kid to more than we could probably count. And so that idea that we've tried everything, I don't have hope that the next doctor, the next therapy, the next whatever is going to help me. That doesn't seem to be related to this risk either. And then loneliness - Jill and I looked at loneliness. And loneliness also did not seem to be a big risk factor. So the bottom line is that feeling like a burden is really important. Now, in the last data set, and I'm really excited about this, this is something that I've just discovered in the last week or two honestly, is that we're starting to think about protectors against suicidal behavior. And what we found is that the older the person is, the less risk of suicidal behavior. Let me say that again: the older the person is, the less risk they have for suicidal behavior. That's wonderful and terrifying at the same time. The wonderful part is that as we get older, that suicide risk seems to drop, and it's dropping by a fair amount, as it turns out. The bad news is: who are we worried about? We're worried about our teenagers and we're worried about our people in their 20s. And that's where we really need to be alert. We really need to be paying attention to whether they feel like they're contributing in the family, whether they feel like a burden on their on their caregivers or their significant others. And so this is something that's really brand new but very interesting, and we need to be careful. We need to watch our kids, even if they're not depressed, right? It's that feeling like a burden. The other one, and this one is going to seem crazy. I'm just telling you right now, Jill. The more physical symptoms the person had in the last study, the less risk of suicide. It was not as protective as age, but here's our thinking: the sicker the person is, the more symptoms they show, the more the family can see that their ill, understands that they’re ill, the more allowances are being made. Maybe the less they're feeling like a burden that family is coming in cheerily and doing what it is that they need to do. Same thing with the doctors - the more symptomatic that person is, and let's go back to the cut in your head, Jill, you had a myriad of symptoms before that, but that cut is the straw that broke the camel’s back, that really made them take a look at what was going on. And so we think maybe the more symptoms that person is exhibiting, maybe the more seriously the health care practitioners are also taken.

00:33:43 Jill (Standing Up to POTS): Well, that makes perfect sense to me. And the minute you even just said more physical symptoms, that was my hunch, and so I look forward to more research coming out on that. But what it sounds like is there may be a most dangerous window at the beginning of a POTS journey when a person feeling sick, doesn't look sick, maybe nobody has been able to figure out what's wrong with them. They may not even believe they're sick. They may be accused of faking it or being just deconditioned or lazy, or just imagining it, and this tends to happen in, you know, the younger that you are. So that sounds like a really dangerous time to me.

00:34:31 Dr. Cathy Pederson: I think it is right. We're not at a point in our research that we can say the cutoff age is X, of course, we can't do that. But we're definitely seeing that the younger people are at greater risk, and so as a parent or a loved one of a teenager or a POTS patient in their 20s, it's important to realize that and to really be as supportive as you can. And I'm not saying be perfect. I am not perfect, you could ask my daughter. But I did the best I could in that moment always, and I think that's enough. I think trying your best and being there is enough.

00:35:11 Jill (Standing Up to POTS): I have one more thought to throw out there because as you know I speak to a lot of POTS patients because I do nutrition work for Dysautonomia Clinic. And one thing that I notice all the time is that I'll be speaking to a young woman or girl about her symptoms, and her tone of voice and her inflection and her mannerisms will be so perky and so upbeat and so positive, and I remember doing that myself. And I think sometimes when your whole life you have been that energetic, perky, enthusiastic person, you still have the muscle memory in your voice almost. And that I catch it because I have reflected on this on myself, but I think it's very easy for young people who are suffering to not make that as clear as you would guess when they talk about it. And I think that sometimes it's worth asking, you know, you say, “So, how are you doing?” And they say, “Oh, I'm OK,” and it can be valuable to say, “How are you really doing?” and probe a little more just in case it is muscle memory that is looking more positive than a person feels.

00:36:36 Dr. Cathy Pederson: My daughter calls that putting on a mask. It's not a physical mask, but you know when she goes to school, and I think she still does it - she's in college now - but when she's out with people, and especially people that don't know how sick she is and how many struggles physically she has, she puts on this mask. She puts on a smile. She tries to perk herself up. She uses all of her energy, and I would pick her up from high school and she would be so spent that she would lean her head against the window of the car. I mean absolutely used everything to try to hide her illness. She would also do that sometimes in the health practitioner’s office and that was not a good time for it, right? It didn't help us because it again gave the idea that maybe all these symptoms were in her head because she's trying to play up for them or has on this mask that she gets used to wearing trying to hide those symptoms.

00:37:38 Jill (Standing Up to POTS): And I think maybe related to it, I know that when I was at my worst, and I was very depressed for a while. I was kind of on the verge of tears for like a couple of years which looking back on now is weird. Luckily I'm so much better now, but at that time I think I was so lonely that if a friend or family member did call me up on the phone, I wanted them to enjoy talking to me. I wanted them to want to do it more and so I so many times I had the experience of feeling absolutely terrible, answering the phone and having someone say to me, “Oh, you sound so good,” and it's just a reminder of how hard it is to really tell by someone’s tone of voice how they're doing.

00:38:19 Dr. Cathy Pederson: That's absolutely right. Let's shift gears a little bit. We got a little heavy there and I want to think about what friends and families of a loved one with POTS can do to try to help improve their quality of life. So how can you make things better for that person that you care about who is impacted, their life is impacted by POTS? And I think number one is believing them. And I think part of that - we are just talking about the mask - but if someone lowers their mask to you and they really tell you about their illness and their symptoms and the way that they feel whether that's physically or emotionally or socially, listen. And believe what they say. Again, you know, these illnesses are invisible. You can't tell whether I'm dizzy or not or whether I'm nauseous or not and so our choice is to believe them or not. And I would air on the side of believing. You mentioned just a minute ago, Jill, that you spent years on the verge of tears, and I'm really sorry about that. You are such a light for me and I think you're such a light for our listeners. And I am really thrilled that you have taken on this role, but when you share things like that, I think you also give them hope. So I wanted to say that, but you were mentioning a minute ago that when people texted or called or with your permission maybe visited in your home, how much that meant. And that you put that mask on to try to make it pleasurable so that they would do it again. And so I think as friends and family members, sending a text, a quick call on the phone, if they say “I don't feel good, I don't want to talk,” take that at face value. Doesn't mean they don't like you, right? It just means right now they don't have it in them. But those little things - what we might consider as a healthy person a small gesture - can be huge to someone who's been isolated physically, socially, and emotionally by their illness. I think another one is if they have to cancel plans, and I know this has happened to us, I'm sure at some point it's happened to you, Jill, where you just really want to go. You want to go to the party or the gathering or whatever it is and the symptoms flare up and you're feeling terrible, right? What do you wish people would do if you have to cancel plans?

00:41:02 Jill (Standing Up to POTS): Well, I would hope they would be flexible and I think over time this is one reason my life has gotten a lot easier is because the people I really enjoy spending time with have gotten more in the mode of having fewer structured things on the calendar and being more of a “go with the flow.” “Oh, hey, you want to go for a walk right now? You wanna go do something right now 'cause you're feeling good?” And that has taken a huge amount of pressure off of me and made my social life much better. And so I came from a family that was very into structure and planning and events on the calendar. And now we are much more just spur the moment people and that is great.

00:41:50 Dr. Cathy Pederson: I think that's a great tip. The other thing is if, you know, my daughter was to cancel on someone she may be OK having them come to her and they could sit and talk or play games but for her to get dressed and brush her hair and ride in the car and then go into a crowded movie theater, may be too much. And so sometimes, maybe it's changing the plans instead of canceling them and again being flexible enough to be to be able to do that. But I think just asking, “Is there anything I can do for you? Obviously you're not feeling well. Do you need me to pick something up at the store? Do you want me to stop by and do something for you? What is it that I can do?” So I think there are a number of things. Another thing I would say is, and Jill, I imagine you've had this too, but we'll talk to people about my daughter's illness and they'll offer up solutions. And it comes from a good place, it comes from their heart, but it really sometimes hits us the wrong way and let me tell you, as the mother of a child, we tried everything. If there was any ounce of “This might help her,” we had already tried it. What were some things that were suggested to you maybe, Jill, some unwanted suggestions maybe on how to improve your quality of life?

00:43:07 Jill (Standing Up to POTS): Oh my goodness, where to start? I mean I, I think that if we had started a list online that could be fun and just collect all of the craziest. But my favorite is that at the same time I had some people telling me that I needed to eat healthier while other people were telling me I needed to eat more Doritos, and so it's fun when they cancel out.

00:43:30 Dr. Cathy Pederson: Well, and to give food advice to a nutritionist is sort of interesting as well, right? But we had tons that, you know, people said if she would exercise more, if she would eat better as you just said, if she would try this supplement, if she would do X, whatever it is that that's going to be the magic elixir to make her better and it just - unfortunately, these illnesses just don't work that way. Another thing I'd say and this is maybe more if you're the spouse or significant other or the parent of someone with POTS is if you don't feel like they're getting good medical care, if you feel like that, doctor is out of ideas, don't be afraid to change to someone else. In our case, we went to nine specialists before we got a diagnosis. If I didn't feel like it was worth our time to come back, we didn't do it. We just moved on to the next person. So, you know, you might have had a doctor for years that was great before you really got sick, before you really needed help, and now they don't know what to do, don't be afraid to advocate for yourself or your loved one and go and find the best person for you. We're actually with a family practitioner now who's done better than a lot of the specialists for us, and I think for us the reason that she's so good is because she has lupus, which is another chronic invisible Illness, and so she gets it. She understands that you can't look at my daughter and understand what's going on underneath, and it's been a game changer for us. She has been willing to tinker with medication and has really gotten my daughter on her feet again. She's not well, but she's so much better.

00:45:15 Jill (Standing Up to POTS): I wish I had known that tip sooner. I feel like I wasted years thinking that all doctors were about the same back when I was younger, and now I realize that doctors are as different as people are and you can find the one that really, really works for you, you just have to maybe kiss some frogs.

00:45:36 Dr. Cathy Pederson: That's exactly right, and some of those specialists that we saw were really upsetting. I'm not going to get into it here, but really problematic. And so we would be on the ride home and we were going to Cincinnati Children's, which was about an hour and a half from here, and I’d say, “Look, we're one doctor closer to the doctor who’s going to help you. We're not going back to that person again, but we are one doctor closer to the right doctor for you.” And so I really would encourage people to keep searching until you find someone who may not have all the answers, but they're willing to try. That's what I've learned over the years. Someone who is willing to tinker and try and cares whether your quality of life is improving is worth keeping. Another one suggestion might be if this person is not already in an online support group for POTS to do that, because lots of people with POTS are isolated. There may not be another person in their community that has it. But there's a whole online community of POTS patients that are in various parts of the journey, and so someone like Jill, who's sort of been around the block a few times, has tried lots of different things, can pass along what she knows to younger patients, or those that have just started in that journey, so I would really recommend that as well.

00:47:03 Jill (Standing Up to POTS): And I would add that a lot of organizations, including ours, invite people to volunteer, and I at least personally found that that is such a wonderful way to meet other patients - to do meaningful work and to do it with people who understand your limitations so they're of course very understanding about them.

00:47:25 Dr. Cathy Pederson: Absolutely, and I think one of the last things is to just really try to maintain hope there is hope. There's a lot of money finally being poured into POTS research. The National Institute of Health is looking into POTS as part of the long-haul syndrome from COVID. Standing Up to POTS is funding it. There are other nonprofit organizations that are funding POTS research as well. And so while we may not have the answer yet, there are people - really talented people - that are working on this problem.

00:48:01 Jill (Standing Up to POTS): You know one other thing I would mention is something that the CDC website on health-related quality of life really points out and they like to drive home the point that health related quality of life is not the same thing as overall well-being and thriving. So for example, health related quality of life does not measure if you have many good relationships or many positive emotions or meaningful work or interesting pursuits or engaging hobbies. So these things are orthogonal to health-related quality of life. You can score low on health-related quality of life while still having a whole lot of positive aspects in your life which may help shift the balance or I like to think maybe even bury some of the bad parts, or you know, outnumber them. And so as we have talked about health-related quality of life, I don't want people to think that it's a sentence to misery if your score comes out low. I think it can create challenges for sure. But, you know, I like to think of all the people who scored low on the health-related quality of life, but who are not depressed, not lonely, not hopeless, not experiencing too much negativity, and so we know that that's possible.

00:49:26 Dr. Cathy Pederson: And they're not suicidal, right? They're not thinking about suicide. So in our group, more than half of those patients were not thinking about suicide. They were not at high risk for suicidal behaviors. That's exactly right.

00:49:39 Jill (Standing Up to POTS): So is there anything more we want to say on this subject?

00:49:43 Dr. Cathy Pederson: I really think that the take home message from this is more for the friends and families of the folks with POTS and that is to just get in there and do your best every day. Talk to your loved one and listen when they want to talk to you. Include them even if they can't physically be somewhere now since the pandemic, we've got Zoom. We've got all kinds of different technology that we can use that can include our chronically ill friends and family members in ways that were impossible, or at least less common before COVID hit.

00:50:23 Jill (Standing Up to POTS): And maybe we should just mention in case anybody needs it, the National Suicide Prevention Lifeline - their phone number is 800-273-8255 or you can text the word START to 741741 and that will get you conversing with someone at the hope line.

00:50:47 Dr. Cathy Pederson: Absolutely, and we do have pages on our website that talk about suicide prevention. They have these numbers on there as well, also give tips some of the tips that we talked about today for friends and family things to look for if they're concerned that someone that they love is perhaps contemplating suicide. So please go to our website and check out those resources.

00:51:12 Jill (Standing Up to POTS): So, thank you Dr. Pederson for helping us to better understand the effect of POTS on quality of life. And to everyone listening, we hope this was helpful. We thank you for joining us and remember you aren't alone. Please join us again soon.

00:51:28 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, Inc. All rights reserved. (Trancriber’s note: If you would like a copy of this transcript, or the transcript for any other episode of the POTScast, please contact volunteer@standinguptopots.org.)