Episode 94: Depressing Truth About Depression Scales

[Transcriber’s note: this episode discusses depression and mentions suicidal ideations and risk. If those are triggers for you, you may wish to skip this episode. If you are located in the U.S. and are struggling with suicidal thoughts, please reach out to the new 9-8-8 hotline.]

[00:00:00] 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 (Host): Hello, fellow POTS patients and wonderful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Basics with the ever excellent Dr. Cathy Pederson. As you know by now, she's our president and founder here at Standing Up to POTS. She's a POTS parent, a neurobiology professor, and a POTS researcher who publishes articles and research on issues that can help our community make some progress on the awareness or treatment fronts. And she has done it again. Today we are going to discuss her latest article, which is called "The Depressing Truth About Depression Scales for People with Chronic Invisible Illness," published in the Journal of Health, Science, and Education. It sheds light on a really important problem in POTS research, one that gets overlooked and can result in patients getting misdiagnosed and mistreated. I think you are going to find this so fascinating as I do. Dr. Pederson, thank you so much for being here today.

[00:01:35] Dr. Pederson (Guest): I'm glad to be here, Jill. Thank you so much.

[00:01:38] Jill (Host): So, what an important topic, depression. Can we just start by asking you to define that and tell us how is depression differentiated from just like normal sadness?

[00:01:52] Dr. Pederson (Guest): Absolutely. I think this is a really important topic. You know, how many of us were told it's all in our head, or we're depressed or anxious before we actually got the diagnosis of POTS or chronic fatigue syndrome or fibromyalgia or something else? And so this is something that I think our community is really going to understand because it's happened to them. And, and we're gonna explain why it happens, and hopefully we can raise some awareness in the medical community to prevent it from happening in the future. So we've all been sad, things happen in our life, life situations. Maybe it's a divorce, maybe it's a death of a loved one. Maybe it's something, you know, you had a fight with someone that you really care about or you break up with someone. And so there are all these things in life that can make us sad. But sadness is, while it can be consuming, it, it sort of diminishes over time. We go on with our daily life. We continue to go to work, we continue to go to school, we continue to take care of our children, whatever it is that we normally do in our life, even though we may not be feeling really bubbly and enthusiastic at the time. When we're talking about depression, it's a more severe end of things. So now you're having problems in relationships because of this dark cloud that's sort of all consuming. Their activities of daily living, which again may include school or work, are being neglected. They're not going with social things anymore. Maybe they used to love going bowling or or singing, and they're not doing it. So technically depression, you have to have to have those feelings for a little longer period of time, and it has to affect everyday life. So it's not that I'm sad today and then in three weeks I'm sad again, that's not depression, right? It's every day, every hour of the day that it's really is consuming your life in the way that you feel. Now I'm sure we have listeners that are psychologists and and psychiatrists and that are really up on this. And so the place where we define what depression is is called the Diagnostic and Statistical Manual of Mental Disorders. But I think lay people maybe have heard of it as the DSM, and the newest version is the DSM-5. And so I've got a copy of my office. It's a big thick book. And it talks about lots of different psychological issues, but depression is one of them. And so let's talk about how they define depression, and this is gonna set us up for the article, too. So depressive symptoms are about the way that you feel emotionally, mentally, the way that you feel. And then somatic symptoms are like how your body feels. They're the bodily ones and those are the ones that are getting confused, I think, between chronic invisible illness and depression. So let's start with the depressive symptoms. I think people will recognize these as being depression. So feeling sad. That's where we started. Tearfulness. Maybe a a little comment, something that normally wouldn't bother you might bring tears to your eyes. Feeling of emptiness inside, you just feel empty. Hopelessness. These are depressive symptoms. Some people get really angry. So maybe you know someone who you think is depressed and they'll be fine one minute and, man, a minute later they're like railing on you. They're really upset. That can be part of depression. Irritability, frustration, again over really small things maybe that that happen. Another big one is this loss of interest or loss of pleasure in things that they used to really enjoy. So a family meal, again, hobbies maybe that they had that they used to really love and now they just don't wanna do it. It doesn't feel good to them anymore. Feelings of worthlessness. Notice all these feelings, right? Feelings of guilt. Looking back at the past and blaming yourself for things that happened or past failures that you can't change. There's nothing you can do about that now, really focusing on those. And then finally, for the depressive part of this, frequent thoughts of death or suicidal behavior where they're thinking about suicide, they're thinking about making an attempt, or they make an attempt on their lives. So lots of different depressive symptoms, which I think most people would say, "Yep, that sounds like depression to me," but it turns out, and I reorganize these from the DSM, okay, to fit my own purposes here, a little disclaimer. But the second half of these are called somatic symptoms or what I'm calling somatic symptoms, which again folks, I mean bodily symptoms. And this again, is where I think the confusion's gonna come: sleep disturbance, Jill and I, you know, we did that paper several years ago now that showed that 97% of POTS patients have sleep disturbance, you know. They have insomnia. That sort of thing. Other people with depression sometimes will sleep too much. I think in the POTS community it's more heads towards the insomnia side of things, not sleeping well. So tiredness and lack of energy. Think about how many POTS patients feel that. Changes in appetite, and I think for a lot of folks, that's a decrease in appetite and then a decrease in weight. Not everyone in the POTS community has that, but many people do. Anxiety, agitation, restlessness. I think of that sort of with that hyperadrenergic POTS where you're on the move, you're wired, right, all the time. Does that have to do with depression? Eh, in your case, Jill, I think it has more to do with your POTS, right? More with those darn mast cells and all that other stuff that's going on. And then here people are gonna be raising their hands: trouble thinking, concentrating, making decisions, and remembering things. In our community, we call that brain fog, right? But I'm reading right out of the DSM I'm reading out of what psychologists and psychiatrists use to quantify depression. Slowed speaking or bodily movements. I know for, again, from my own daughter, when she is really run down, man, she is slow moving and that again, doesn't have to do with depression. It's from her physical illness, her POTS. Here, you're gonna love this one, Jill, you ready?

[00:09:04] Jill (Host): Yep.

[00:09:05] Dr. Pederson (Guest): Unexplained physical problems like back pain, headaches, migraines. Think how many in our community have migraine headaches. So anything else that's unexplained they can put into that category.

[00:09:19] Jill (Host): Okay. Now I wanna rip out my hair. This is so frustrating because it's, it's feeling like so many symptoms of complex chronic illness look like depression.

[00:09:32] Dr. Pederson (Guest): They do.

[00:09:33] Jill (Host): The symptoms they can see are the ones that would make it really, really easy to confuse POTS or chronic fatigue syndrome, or mast cell activation syndrome, or fibromyalgia or some others. Those could so easily look like depression, and I think that's the point you're making?

[00:09:55] Dr. Pederson (Guest): It is. But think about this on the flip side. So if you are the physician, what do you know more about? What do you think is most likely? You know, doctors are trained to look for horses when they hear hoof beats instead of zebras. And so their assumption goes very quickly to depression because look at these symptoms, these somatic symptoms, where I think everybody may be saying, "Wow, I recognize myself here." And so I, I think it's not their fault in some ways that they go to the depression when you actually look at what the symptoms are, but that doesn't help our folks to have this called depression when the depressive symptoms, they're not feeling sad, they're not feeling fearful. They don't feel empty, they don't feel worthless. Those things aren't there, and that's what's tricky about this.

[00:10:48] Jill (Host): Well, and the other thing that's tricky, I think, is that if you're told long enough that there's nothing actually wrong with you, and it is all in your head, that's when you begin to feel worthless or you begin to feel hopeless and all of these other things. So I worry that it could become a self-fulfilling prophecy for some of us. I think that it did for me, and I know that I have felt this and I've heard other patients say it, that they have been depressed and they have been not depressed, and they can sure feel the difference and they might not look any different, and their sleep, their agitation, their restlessness, their slowness, their brain fog, that doesn't change. What really changes is those feelings, and they know the difference, but it can be really hard to convince someone when you look the same either way,

[00:11:47] Dr. Pederson (Guest): That is exactly the problem. You hit it right on the head.

[00:11:52] Jill (Host): So I am so, so grateful that you have brought this to the attention of the, of the research world. Let's dig into a little bit about depression in the POTS community. How common is true depression in the POTS community, or how common does the literature say it is in the POTS community?

[00:12:18] Dr. Pederson (Guest): That's a great question. I think it's a complicated answer. Our paper was published from the Big POTS study in 2019 that asked about depression and asked about diagnosis of depression. And what they found was that, at first glance, 77% of POTS patients were first told that their symptoms were due to a psychological problem. For some it was depression, for some of it was anxiety. Okay? But a psychological problem. And then they got diagnosed. And when they got diagnosed, that number dropped from 77% that were depressed to 37%. So 37% continued to have a depression diagnosis after they were diagnosed with POTS. But what that means is 40% of people who were first told that they were depressed, lost that diagnosis sort of magically, when their physical illness was correctly diagnosed. There was another study in 2018 that looked at the rates of depression in POTS, and what they found is that folks with POTS have about the same rates of depression as the general population, which is good. That means that we're not all depressed, that not everybody in the community is depressed. It's about the same as people that don't have POTS. But what I found fascinating in that article is that the folks that were diagnosed with POTS had mild or moderate levels. They were not severely or extremely depressed, so they were actually in the lower half on these depression categories. So even when they were depressed, they were not that severe depression, which is good news again, for our community.

[00:14:19] Jill (Host): So that's interesting. Okay, so can you talk more about the issues for POTS patients when they're being assessed for depression?

[00:14:29] Dr. Pederson (Guest): Right. So our problem is that these scales, these instruments that measure depression, often look at those somatic symptoms that we were just talking about, the bodily symptoms. And so these are the ones that can be contaminated by a chronic invisible illness like POTS, like Ehlers Danlos, like fibromyalgia, like mastt cell activation. And so again, just to remind everybody what I'm talking about with somatic symptoms, it's that appetite change and the change in weight that often goes with it. It's that sleep disturbance and then changes in energy, fatigue, slowness of movement. It's that agitation and irritability. This one, and this comes right off of some of these, these depression instruments, they actually ask about heart palpitations and tachycardia. I almost fell outta my chair when we started doing this, because you know, we're called postural orthostatic, what is it - [Laughs] - tachycardia syndrome! Right!! But they're asking about these on depression inventories. That mental clarity and concentration. Again, think brain fog, my friends. And then the last one, they actually ask about this on some of the scales that we looked at, hypochondria. How many people are told by family, by friends, by practitioners that they're a hypochondriac? There's nothing wrong with them, but this came up on some of the skills that we looked at. And so I do think that this is really an important topic and that if our listeners take a depression scale and you come out as depressed and you don't think you are, challenge them. Talk to them a little bit about how these somatic symptoms can inflate their scores.

[00:16:30] Jill (Host): Well, yeah. Just to emphasize what you are saying, I was reading a paper recently that had come out in a top neurology journal. It came from a top institution, their dysautonomia clinic. They had used a depression scale that asked questions such as, Is your appetite not what it used to be? Are you not sleeping as well as you used to sleep? Do you find that you have heart palpitations sometimes? Do you have trouble concentrating? And it really seemed irresponsible of people who study POTS and dysautonomia to use a depression scale where they know that the POTS symptoms are gonna make patients look depressed. I got curious, and so I went and I took the depression scale myself, and I took it as a person who was very, very happy and not depressed, but as someone who has pretty severe POTS symptoms. And when I scored myself, I came out as mild to moderate depression. And I thought, Aha! There you go. So, of course in their study, most of the POTS patients looked more depressed than their controls, and it, it really seems quite irresponsible. And do researchers not read their own depression scales before they put them in their research? I mean, I wonder if some of these depression scales are just so, so common and they're just, they're validated, they're in the literature, they've been used so long that people don't think, they just throw 'em into their research without really considering that there's this major, major confound?

[00:18:18] Dr. Pederson (Guest): Well, I think there's a huge literature that uses some of these scales over and over, and so when you're thinking about publishing, you have to think about using the scales that you think the editors of that journal will accept. So I think what we need to do is put out a call for someone to write a new depression inventory that is purely looking at those depressive symptoms, the ones that are thinking about your feelings of guilt, of worthlessness, of emptiness, of sadness and not what we're calling here these somatic questions, where a POTS patient is absolutely going to have an over-inflated score as a result of that. And you know, why does this matter? Let's get into that a little bit. Why does it matter if my good friend Jill Brook comes out and let's put you on the, on the moderate. If I'm your doctor, maybe I don't do any more testing. Maybe that was a survey that you do on the computer before you even come in. I see that you're moderately depressed. That's the horse, right? I hear hoof beats. I'm going after the horse. I treat you for depression and that's not gonna do a darn thing for you. But worse than that, I may not look for anything else because in my mind, I've solved the puzzle as depression. In other cases where people may have a little bit of true depression, mild to moderate depression, and then they've got these symptoms on top of it, when we over inflate those scores, now we can have liberties taken away. So I have a friend whose child was chronically ill and had some depression, was having surgeries, was in and out of the hospital, was having all sorts of issues, gave this person a, a depression scale, and they came out at the very highest level, were put on suicide watch. So this is someone who had mild to moderate depression, and they came up at, at the extreme end of things, couldn't even go to the bathroom by themselves in the hospital for concern about suicide risk. And so being kept in the hospital or put on a psych ward or on suicide watch when it's not warranted. And again, this is difficult because in some ways it's not their problem. They're using a bad instrument, and if they're not aware that they need to look at depressive versus somatic symptoms, this is easy to do. If you just look at the total score at the end, that physician may think they're doing the right thing, that they're protecting that life, when actually they're making that life much more difficult.

[00:21:22] Jill (Host): And I would just like to emphasize, how much I truly believe that being misdiagnosed with depression instead of whatever's really wrong with you can snowball into real true depression. I feel like this happened to me, and I know that our listeners know that it took me 17 years to get diagnosed properly, and in that time, I really started to believe that I was imagining this, making it up. I thought that I had cost my family so much trouble and so much financial stress and so much difficulty that I had ruined my career for nothing, that I had brought all of this on myself. I believed that I was just a person who was somehow creating these problems for. And that's what makes you feel worthless and anxious and hopeless. That is the very thing that can drive the true depression. And in my case, once I had an actual correct diagnosis and things that I knew I could do about it, and even just that feeling of Aha! I was not crazy all along, there was something there - that was enough to make me not truly depressed anymore. And so it absolutely crushes me to think of all these patients out there who are being driven to true depression by this false diagnosis of depression through these very things that you're talking about. And I, I just cannot emphasize enough how valuable it is that somebody like you is out there bringing this to attention. And it kills me that we have gotten through 30 years of POTS research without somebody calling this out sooner.

[00:23:13] Dr. Pederson (Guest): Yeah. I'm really thankful that you are so open with our listeners and that you talk about these things with our listeners. I think that helps, that validation for someone who's listening at home and saying, "Wow, that sort of happened to me too. I'm not the only one." You know, I, I think that is so important, and so I thank you for that and I think our listeners can hear that intensity in your voice, right? That's, that's an emotional topic for you and a lot of your lived experience and, and it's important and, and we do need to keep working, keep advocating to prevent that from happening to someone else. And that's what you and I are doing here. That's why we're doing this show, right? [Laughs] Not just this episode, but so many episodes to help people see their own lives matter and that they're not the only one who's walked that path.

[00:24:16] Jill (Host): Well, the beauty of what you're doing is you are bringing the quantified scientific angle. So I love that in your paper you looked at how do scores change if those somatic symptoms are removed? Can you talk about what you did and what you found?

[00:24:37] Dr. Pederson (Guest): Yeah. This was a crazy study, we published, really. And I do need to call out my good friend Brooke Wagner, who helped me with all of this stuff. But a lot of our listeners may have participated. Standing Up to POTS puts out surveys every once in a while, and this is what we're doing, folks, we are publishing from your data. So this was our own folks. This is our Standing Up to POTS community. We had 685 women who are chronically ill take a variety of tests, but the one that we focused on here is a depression tool called the Beck Depression Inventory II. Now, the women who took this, most of them come from the POTS community, as you can guess. That's what we're really drawing from. But the, I just wanna tell you, the main diagnoses and some of the, the folks that took it had multiple diagnoses. So Ehlers-Danlos syndrome, chronic fatigue syndrome, Myalgic Encephalomyelitis, mast cell activation syndrome, vasovagal syncope, and fibromyalgia. So all of those, we had more than a hundred people diagnosed with at least one of those. And so we're looking at our folks, right? We're looking at you that we're talking about. And this particular survey, it's called the Beck Depression Inventory II. It divides depression into four categories. So minimal - that's the lowest, that's, you can't get any lower than that. So you can say none. Okay? So minimal is the lowest one. Then mild, moderate, and then major. So you hear people talk about major depression or clinical depression, so that's the most severe form. And so we looked at folks that fell into this category of major depression - so that's the most severe - and if you look at just the raw scores, 38% of our folks fell into that most severe category, that major depression category. But when we took out those darn somatic symptoms that we've been talking about, appetite, sleep, energy, that sort, brain fog, you know, the mental clarity, that sort of thing. The, the percentage of people that fell into that major depression category dropped to 8%.

[00:26:54] Jill (Host): Wow.

[00:26:56] Dr. Pederson (Guest): So 30% of people, when we took those symptoms out, they dropped out. Now, what that means is some people were truly in that major depression category, and you know, that's okay. In the, in the general population, you would see a similar sort of percentage, but lots of people had an over inflated score and were being artificially moved up into this really high level. I think just as telling is to skip down to the very lowest category. So that was called the minimal depression. So that's the one, like none. It's the lowest category they have. And so when you look at the full scores with the depressive symptoms and the somatic symptoms, it was about 14% of our participants fell into that lowest category. But when you take out those somatic symptoms, those bodily symptoms, it increased to 45%. So now 45% are basically in the none category when again, you get rid of appetite, weight change, tachycardia, hypochondria, all of those things that we were, brain fog, all of those things that we were talking about before. When I saw that, so Brooke does the stats, I do the writing. That's the way we work this. And when she produced this table, I was like, that's the paper right there. This shift from Major Depression, which is the highest score, and some folks, a lot of folks actually dropped one level, but a lot of 'em dropped all the way down. It was those darn somatic symptoms.

[00:28:39] Jill (Host): Well, of course!

[00:28:40] Dr. Pederson (Guest): And we're over inflating that. It's crazy.

[00:28:43] Jill (Host): Yeah. I mean, honestly, this makes me want to scream because, because this should be less complicated than it is. This should be more obvious to doctors or researchers who study chronic illness. But I just wanna take a moment to just say that again so that people don't miss it. That major depression showed up in 38.5% of patients versus down to only 8% when they took out the symptoms that match POTS symptoms or other chronic illness symptoms, and the zero or minimal depression went from 13.9% to 45% when you take out those symptoms that are confounds. That is mind blowing. And what that says unfortunately is that 30 years of POTS research looking into depression and POTS needs to be reevaluated. That is not valid research.

[00:29:45] Dr. Pederson (Guest): I agree with that. Yeah. And we've gotta be careful, as you were saying earlier, what are we using to look at depression because they're not all the same. So that was the first part of our study, is looking at how our participants shifted when we got rid of those symptoms, again, as you said perfectly, that match chronic invisible illness symptoms. But the second part of the study, we actually looked at eight depression inventories that are used for adults, and the differences here were huge. It was mind blowing to me. So as you were pointing out before, which instrument researchers choose when they're doing POTS research or clinicians choose to use when they're assessing their own patients is really important. So the best one is called the Center for Epidemiological Studies Depression Scale. So that's the name of the survey, and 75% of their questions were asking about the feelings, what I'm calling those 'depressive symptoms.' I feel sad. I feel suicidal. I feel empty. I feel guilty, that sort of thing. And only 20% were the somatic symptoms. So again, those that would match what we're talking about with these chronic invisible illnesses. I think we need a better test than that. I think we need one that is a hundred percent depressive symptoms that doesn't have any contamination of the somatic symptoms, especially for our population. I don't know that there's one out there like that, but I'm, let's put that call out, Jill, you and I, together. We're calling on someone with that skillset to do that for our community.

[00:31:38] Jill (Host): Well, yeah, because if the best one still has 20% somatic symptoms, that still sounds pretty high to me. You wouldn't choose any measurement tool that was 20% contaminated for anything else. That's still pretty bad.

[00:31:54] Dr. Pederson (Guest): And I should say, we probably have people saying, you said 75% and 20%, that does not add up to a hundred percent. They are correct. We had one that we put in an other category that didn't have anything to do with depression or somatic symptoms as far as we could tell. So that's why that doesn't equal a hundred percent.

[00:32:14] Jill (Host): That's why you're awesome. You're more thorough than anybody else on this! [Laughs]

[00:32:18] Dr. Pederson (Guest): [Laughs] There's work that needs to be done here. That is the, that's the story that we're trying to tell.

[00:32:25] Jill (Host): Well, if 20% somatic symptoms was the best one, which ones are the worst? And how many somatic symptoms are contaminating those?

[00:32:37] Dr. Pederson (Guest): Okay, so we wanna go there, huh?

[00:32:40] Jill (Host): I will. If I'm gonna scream, I'll make sure to do it into a pillow so that I don't hurt people's ears.

[00:32:45] Dr. Pederson (Guest): Okay, here we go. So the quick inventory of depressive symptomology self-report is the absolute worst. 25% are the depressive symptoms, the ones asking about your feelings. 75% are somatic.

[00:33:04] Jill (Host): Unbelievable!

[00:33:06] Dr. Pederson (Guest): So a POTSie is gonna go through the roof on this. They don't need to have any depression at all, and they're gonna be in the highest category or the next highest category, especially if their POTS is severe.

[00:33:18] Jill (Host): Unbelievable.

[00:33:19] Dr. Pederson (Guest): So we wanna stay away from that. We're not even gonna repeat the name because we don't want people to remember it. Okay. I really wanna talk about the one that was next to worst. Okay. Can I do that?

[00:33:32] Jill (Host): Please.

[00:33:33] Dr. Pederson (Guest): So, it's called the patient health questionnaire, and that one had 45% depressive symptoms and 55% somatic. And here's the reason I wanna talk about this. My mom, after she had a stroke, we went to the Neurological Center at Ohio State for follow-ups, they gave her this test. My daughter who's having some issues with some medication, not depressed, they made her take this survey. It's the one that's the next to the worst in this paper that we came up with. Here's why they like it: it's only nine questions, so it's short. It doesn't take the patient very long to do, but it's given in all sorts of clinics. So clinically, this may be the one, certainly two people in my family have been given this questionnaire in a clinical setting to measure their depression. But if 55% of the questions are asking about appetite and tachycardia and weight change and brain fog sorts of symptoms, that's a disaster for us. That's a disaster for our community. And so here's the other call that maybe needs to come out, is for clinicians to move away from this patient health questionnaire, particularly when there could be a chronic invisible illness there. But this one is really commonly used.

[00:35:13] Jill (Host): Yeah. You know, at my doctor's office, they just give this to every single person who walks in the door and while you're waiting in the waiting room, they have you fill this out so that they can just check everybody. And after reading your paper, I decided that what I'm gonna do from now on is I will answer the four questions that are the depressive questions, but for the five that are somatic, I think what I'm gonna do is just not answer them and instead draw an arrow to each one with a little note on the side saying "I have POTS" with five exclamation points. And say, "Of course I have these things but it's not depression", and see if I can try to raise that little bit of awareness in a cardiologist's office where they ought to know these things. But I, I do feel like maybe that's how we can try to protect ourselves and try to raise a little bit of awareness at a grassroots level until people get this through their heads.

[00:36:12] Dr. Pederson (Guest): I think that's a great idea, and then attach the paper. Let me just say before it gets away from me, I love the idea that the cardiologist is screening everyone for depression. I think that's really responsible. I think that's a really good thing that they're trying to do. They're just using the wrong instrument. Let's say that one again. The Center for Epidemiological Studies Depression Scale is freely available. So they could switch to that one, which still isn't perfect, but it's a lot better than the patient health questionnaire. So kudos to them for looking for the depression, for screening, for the depression. You know, if your doctor does this, like Jill's does, every time you go in, print out this paper, refuse to answer those somatic questions and, and put the paper with it. Let's make some changes here. They don't even have to read the whole thing. They can scan for the tables. They'll see what test is the best at looking at those depressive symptoms.

[00:37:19] Jill (Host): I love that. So I would just like to say the name of your paper again so people can find it. And you did publish in an open access journal, which means that people don't have to pay $40 to get it, they can just get it for free. It is in the Journal of Health, Science, and Education, and I like the name. The name is "The Depressing Truth about Depression Scales For People With Chronic Invisible Illness."

[00:37:45] Dr. Pederson (Guest): Yeah, I made that title sort of tongue in cheek, and it stuck. My partner, Brooke Wagner, laughed when she read it and she's like, "That's the perfect title." So it stayed in there. But part of the reason that I use that journal is so that people can see these articles.

[00:38:02] Jill (Host): Well, Dr. Pederson, I agree this is such important work you have done. You can probably hear that it's a little difficult for me not to be frustrated at all the POTS researchers in the past who have failed to think about this, but as usual, you are amazing and you are doing such good and important work. And you're publishing it in the academic literature where it will get noticed by the right people and make the right impact. It's not just patients speaking up and, you know, like me sounding emotional about it. It's you putting it in the scientific literature so that, so that this community can make some progress where it matters. Dr. Pederson, thank you so, so much. Is there anything else we should say about this today?

[00:38:48] Dr. Pederson (Guest): I guess I would say that for people that recognize their story in here, where they've been told that they're depressed, but they don't feel like they're depressed, believe yourself. Look to your own truth and don't let anybody else on the outside tell you what you're feeling and know that there are these issues. So even if you scored higher than you think maybe you should have on that test, that it may be these other symptoms, and don't make that part of your identity. My doctor said, I'm depressed. I don't feel depressed, but maybe this is what depression feels like. Don't give them that kind of power, at least in this arena. Trust your gut.

[00:39:33] Jill (Host): Amen! Well, as always, thanks a million. And hey listeners, we hope you enjoyed this discussion. We'll be back next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon.

[00:39:51] Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you. This show is a production of Standing Up to POTS, which is a 501(c)(3) non-profit organization. You can send us feedback or make a tax deductible donation at www.standinguptopots.org. You can also engage with us on social media at the handle @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcast or at www.thePOTScast.Com. Thanks for listening. © 2022 Standing Up to POTS. All rights reserved.

[Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org]