Psychological Experiences of POTS Patients with Dr. Alissa Sheldon

E193: Psychologist Dr. Alissa Sheldon [00:00:00] Jill Brook: Hello fellow POTS patients and lovely people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we are going to discuss psychological issues that come up in this space with a PhD psychologist who really gets it. In fact, she specializes in helping patients with POTS, MCAS, hypermobility disorders, and related comorbidities. Dr. Sheldon, thank you so much for being here today. [00:00:27] Dr. Alissa Sheldon: Oh, thank you so much for letting me participate in this with you. It's awesome. [00:00:32] Jill Brook: So I guess I should say your full name. You're Dr. Alissa Sheldon, and you are from Florida, right? And what else should we know about you? Can you talk a little bit about your background and your work? [00:00:41] Dr. Alissa Sheldon: Sure. Sure. So first off, I'm sure everybody knows that any psychologist is crazy, so yes, I am crazy. And I'm doubly crazy because I'm also the child of a psychologist, so I had no choice. [00:00:54] Jill Brook: Right on. [00:00:55] Dr. Alissa Sheldon: so yes, I trained down at the University of Miami School of Medicine and my training was in behavioral medicine. So I'm a cognitive behavioral psychologist who has always been interested in the interplay between physiology and behavior and cognition. [00:01:18] Jill Brook: Oh, very nice. Okay, so like, what types of patients do you see? [00:01:23] Dr. Alissa Sheldon: Well, I do garden variety psychology like every other psychologist, so you know, you don't have to have POTS necessarily to see me, but as I have been in this space longer and longer, I'm definitely more in that realm but I work with people Who aren't fortunate enough to have POTS like us they can still have anxiety or depression or, you know, attention issues, relationship issues. But what I'm so fascinated by is how all of those things are impacted by somebody who also has a medical challenge. [00:02:00] Jill Brook: Yeah, and can I ask, when you see people with different medical challenges? Do you think that the POTS and MCAS and EDS and all that kind of world is a very unique kind of medical challenge or is it just another medical challenge? Like, do people with different medical challenges all generally have the same issues? [00:02:21] Dr. Alissa Sheldon: That is such a great question. I love that you're having us even think about that because I think you're right. I think you've touched on something. This is, I would say in some ways, more unique than if somebody were to come with a medical challenge, an illness or an injury that is a little more commonplace. Because I feel like the additional, almost a burden is that The patients that are struggling with POTS, mast cell EDS chronic fatigue, they are not only reporting experiences of being doubted in the medical community, but they also start to doubt themselves. And then they're experiencing all these physical symptoms. in, In the cancer arena, when I'm working with a patient who's undergoing chemotherapy and they're not feeling well, everybody says, well, of course you have cancer. Of course you don't feel well. But when you get into this other realm, there's the sense of nobody really is even acknowledging what I have as being real, and I think I'm feeling these things, but am I really? Does that make sense? [00:03:38] Jill Brook: Yes, absolutely. Especially, I mean, it took me 17 years to get a diagnosis and during so much of that time, actually me and my whole family just assumed that my problem was caring too much about everything, which is funny because as if caring too much about everything can lead to... That kind of symptom problem, but it's just funny because to us, it just made sense. Like that was my, I guess, predominant character trait character flaw, maybe. So obviously that must be causing all my problems. We didn't even think much of it. So that is interesting, but you know, it's funny. I have to just share one other funny tidbit because I, I. Get an infusion once a month as part of my treatment for POTS, and I'm lucky that now I get to do it at home, but I used to do it at a cancer treatment center. And it was funny because at the cancer treatment center, there were a couple of POTS patients there and they were We were able to get our infusions there, but if you had cancer, you also, if you could get your infusions there, you got a free lunch, you could have free dietetics counseling, free psychological counseling, they had massage, and it was so funny because they outright made us second class citizens, which was not a big deal. It's not like I cared about that stuff, but I always had to laugh and say, wow, this is such a little microcosm of the world. [00:04:55] Dr. Alissa Sheldon: you're you're right that sets the tone for, okay, for whatever reason we've agreed you can have this treatment, but we're still not 100 percent sure that it's necessary or valid, right? [00:05:09] Jill Brook: And we're going to make sure you know it by not getting the free lunch or whatever. [00:05:12] Dr. Alissa Sheldon: And I always think, I think I shared, I come from a medical family on all sides, and I remember my father in law teaching me that in the olden days, they used to think that something even basic like asthma was psychosomatic and Yeah, you know, you could have a patient come in and basically be turning blue and they'd be like, you just have to stop thinking about it. And now, of course, we understand, no, it's hyperactive airway disease. And so I always try to maintain that perspective of even if we don't fully know how to identify and diagnose something, that does not mean it isn't real. [00:05:52] Jill Brook: Wow. I did not know that about asthma and I'd almost like to see a timeline. Like do most poorly understood medical conditions go through a period of [00:06:02] Dr. Alissa Sheldon: that. That's, that's a great, ooh, I would love to research that. That sounds fascinating. Yeah, is there a progression of when people start to believe something is real? I like that. [00:06:14] Jill Brook: Yeah. Okay. And so. sounds fascinating, so I know that like for myself, believing that I was kind of creating all of these symptoms and bringing it on to myself, that caused a whole host of different psychological symptoms and like different ones over the years. I think like at some times it was mostly like guilt and shame and at other times it was maybe like loneliness and there was some anxiety. Like, what do you see? What's the psychological symptom that can come from having the world not believe that your symptoms are real and serious or you yourself not believe [00:06:55] Dr. Alissa Sheldon: I think that's one of the, the most I'd say difficult things for me to see as a practitioner is how people don't trust their own bodies and again, I understand like what we deal with this triad is such that our bodies are unpredictable, so we may feel great One time when we fly in a plane, and then the next time we may feel horrible. So we're already living with that high level of uncertainty where we can't necessarily predict how our bodies are going to behave. But to then have that emotional sense of, am I really feeling this? Is this real? Everybody's telling me just suck it up. You're fine. You know I used to hear a phrase a lot, suck it up, rub dirt on it. If only that worked, I would do it. And so I think that's where so many people struggle, at least patients by the time they get to me, I know that there's so much self blame and they take so much such a high degree of responsibility for their experiences and their symptoms. When, like we said, like if somebody fell down and broke their leg, God forbid, and they'd be like, my leg hurts. Everyone would say, of course your leg hurts. It's broken. But we don't have either the internal or the external validation. That I think we need. [00:08:20] Jill Brook: Yeah, so do you find that that affects, like, young people and older people the same or differently or people who've had the disorder for a shorter amount of time versus a longer amount of time? [00:08:31] Dr. Alissa Sheldon: You know what, that's also, that's an interesting thought because more and more as these these disorders are being recognized and diagnosed, I think, obviously, we're more understanding and aware that there even exist I don't see as many people in my practice who are my cohort I'm in my fifties or older, so I know a lot of people speculate, Oh, does that mean this never existed before? And we're just seeing it now. And is it, you know, a function of epigenetics? And I don't think anybody knows for sure. And if they do, I would love for them to share that with me. So this is where, because I work in a hospital, I will often tell my non psychologically minded, you know, colleagues, be on the lookout for these things, because I always say, this has seen you, you have not seen this. You know, I mean, these patients come in and out of your office all the time, whether you're a cardiology and the person has a normal EKG, but they're talking about their heart racing or they're in dermatology and they're like, I don't know why I'm flushing and, and so I'm always trying to encourage my colleagues to think beyond. You know, as they say, horses and zebras. I mean, those zebras are probably a lot more common than we think. We just, we don't know to look for them. [00:10:00] Jill Brook: Right, right. And do you find that your colleagues are pretty open to that or how often have [00:10:04] Dr. Alissa Sheldon: know, I I'm very grateful that yes, I would say pretty much the majority of them are curious, because people usually who go into science and helping profession, we're curious by nature, right? So we want to understand things. So I look at it as an opportunity to try to educate them on something they may not, you know, so just like they may tell me, Oh, this is the new cream that treats eczema. Cool. Great. Good to know. And so, I think that's where I've been very fortunate in that the majority of the patients that come to me now come from other medical providers, other specialties. They say, something seems off, I'm not sure what it is, but I think this might be something you do. And I always say, sweet because prior to that, the majority of times patients would come is And again, I don't know if any of your listeners have had this experience, but they go to the emergency room or the doctor's office, they're in the middle of a flare, and they're told it's anxiety. It's all in your head, there's nothing wrong with you, you just need to see a shrink. And very often what winds up happening after they meet with someone like me and you know, we do our evaluation, I will often kick it back to that provider and say, yes, they are anxious, but they are anxious secondary to the fact that they are having a medical crisis and you guys need to look a little bit deeper. [00:11:43] Jill Brook: And so, yeah, I really appreciate that. In my mind, the best solution to any problem that stems from a medical problem is to fix the medical problem first, as much as you can. But like, what about what's left over? And I don't mean to make this about me, but I'm the only frame of reference that I have, but like, so for example, my self esteem was pretty crushed after so long. Like how do you work with somebody to help [00:12:14] Dr. Alissa Sheldon: That's, and I give you so much credit for being so honest about that, and yes, I mean, I think that's pretty universal in our world because if you've been told the world is flat over and over, and you're like, I'm pretty sure it's round, they're like, nope, flat, told you it's flat, you gotta believe us, you know, you start to doubt yourself, and you're like maybe there's something wrong with me. I would say almost 100 percent of the time, maybe 100 percent if I were to calculate patients after that, even before a session, just making contact with somebody like me and they're like, who, who says, no, what you're dealing with is real, there's this sense of overwhelming relief, like, wow, I don't have to prove that I am not well, All right. Was that your experience? Sure. [00:13:02] Jill Brook: Yeah, for sure and I've encountered that just in the patient population too, sometimes even when I'm just doing some of the patient episodes and they say, Oh my gosh, it's so good to talk to somebody who believes me. [00:13:13] Dr. Alissa Sheldon: that is really a shame because I think that's a function of education and that's where, and yes, my poor colleagues, I know as soon as they see me coming down the hall, they're like, we know, we know, zebras. I'm like, yeah, zebras, but you know what? I look at that as an extra responsibility and a privilege to be able to try to pass that on. [00:13:34] Jill Brook: CAn I ask you about another thing that I think comes up commonly, but I'm wondering what you think about it. And feel free to just free associate on any of this, but For some of us zebras who have a lot of hypersensitivities, we have, so for example had a lot, maybe a lot of scary reactions to food, and then maybe even to, like, we try to go swimming and it's the chlorine in the water, or sometimes we don't even know what it is and we can kind of like learn to be a little freaked out by novelty, um, and and Is that something that you see [00:14:14] Dr. Alissa Sheldon: again, I, I'm sure your audience is so, they're probably so knowledgeable and I, and so I'm going to, know, assume that they're all familiar with like, you know, anxiety. And how we're hardwired to have those responses as a means of keeping us alive. Right? So, if we hear, stomp, stomp, stomp in the caveman days, the caveman didn't have time to be like, is that a friendly dinosaur? Is that not? They just had to run. And so that physiologic cascade of responses automatically gets triggered. So part of how we as humans try to control when that gets triggered is by predictability, right? So as humans, we want to be able to try to predict as much of our environments as we can. Yet what you just described is being constantly in a situation where you can't predict. You don't always know, right? So one time, you may be able to go swimming and it's okay. Another time, you may go and head to toe, you know, bright red and needing, you know, to go seek treatment. Sometimes I think that the anxiety label or that diagnosis gets made when it's really, if we put it in the perspective of what that person is contending with, it starts to make more sense, right? [00:15:47] Jill Brook: Yeah, yeah, I think so. And so it's hard for me sometimes to know how to balance. Like, I think sometimes maybe like the gaslighting contingent of the medical world would have me just throw caution to the wind and you got to just go out there and you got to just do it and you got to eat this and that and try everything. And yeah there's a part of my brain that would absolutely love to do that i like novelty it's fun. But then there's another part of me that says oh man so oftentimes when i do that you know you Bad things happen. I guess maybe this is why people come to you. They find somebody like you who is familiar with both sides of that coin and can help them find the right amount of caution and the right amount of novelty seeking to [00:16:30] Dr. Alissa Sheldon: also [00:16:30] Jill Brook: how to [00:16:31] Dr. Alissa Sheldon: I think there's also a subsequent part where, so say that they say, Oh, just throw caution to the wind, you know, try eating mushrooms. You've been fine with them before, or most, fill in the blank disorder patients are fine with that. And then you do, and then you have an adverse reaction and you need treatment and they say, well, why did you do that? You shouldn't have had mushrooms. So yes, I, I, I definitely, the more supportive and educated we can make our medical providers I think the better off we will all be, regardless of what we're dealing with. So how do you personally, how do you try to find that balance for yourself? Cause I think it's different for everybody. [00:17:13] Jill Brook: Yeah, so for me, I've kind of come up with a few like little policies through trial and error. Like first I react to a lot of foods, so I kind of have a thing where first I just put it in my mouth and spit it out. And if that's okay, a few hours later I chew it up and I still don't swallow it. I spit it out and then the next day I take a bite. And I kind of have taught myself that I have to make some progress every single day, but it can be a very, very baby step and... The other side of it is, I think, the whole hypervigilance, right, because I was told for 20 years that I was just hypervigilant, so now I really question when am I being hypervigilant and when am I not, so I have this little personal policy of my brain is very sticky, like if I start a project, I hate to be interrupted until I finish that project, so I tell myself if I'm worried that I'm having a reaction, I start a project, and A lot of the time I'll just forget about it because I want to finish that project, but if I'm bothered enough in my body saying, hey, you got to do something here, then that's my little shorthand for you should believe your body, but it took me like, you know, I'm, I'm old now, I'm 50, and it took me like 20 years to find this system that worked for me, and I really wish I had had somebody like you to talk to 20 years ago. Well, that's, and I'm so impressed that you found a system that you could apply to help you go through those steps because again, just like we were saying before, like you found a way to try to control an uncontrollable situation. But I also had a lot of mistakes along the way. You know, I probably had whole years where I just didn't try anything new because I was scared, and then I had whole years where I was so determined that I was just imagining it. That I, you know, put myself into anaphylaxis a few times and that was not cool and I reacted too late. And so it seems like it's like legitimately this super tough thing that unless somebody has someone like you to work with who genuinely understands the medical side and the psychological side. [00:19:20] Dr. Alissa Sheldon: Well, and I know you know the stats probably better than me, but I think was it the last study that came out from Dysautonomia International where they said like it takes like what, 10 to 12 years and X number of providers and all this stuff and, and so yeah, because this is not something I remember. 1 of my colleagues said to me, she said, I'm pretty sure I maybe had 1 sentence in 1 textbook 1st year of medical school about mast cell. So to have to understand all the different complexities of it. And I'm blessed. That I get to be the nerd fly on the wall to all these different organizations. And so now there's one we're doing with genomics and Ehlers Danlos and it's great. Cause like they'll present things and I'll be like, have you guys thought about POTS? And they're like, Tell us more. I'm like, cool. I would love to tell you more. And I'm so fascinated to see how much more we learn because especially post COVID now that so many people started dealing with what they're calling long COVID a lot of those patients are presenting with similar symptoms as POTS patients. And so there's now a greater, I would say, level of focus and attention in the scientific world as to, wow, we might want to understand this. And I'm really hopeful that one of the outcroppings of that is better, a better sense of where this is coming from and potentially how to treat it. [00:20:59] Jill Brook: Yeah. Now, when we had talked once in the past, you had kind of mentioned that when you work with someone, your goal is to make it so that eventually they [00:21:09] Dr. Alissa Sheldon: don't need you as much. Oh, sure. You bet. You bet. Yeah. I always joke from like the first contact. I always say my goal is to basically train someone to become their own psychologist and If I get to the point where the person has learned and can implement all of the skills and tools and understanding that they need, that they don't need me anymore, then that is a success. If I put myself out of work, I've done what I need. And because I've been doing this for a while I often will also refer to myself, kind of like a reference book. I say, like, think of me as like that book on your shelf, although now it would be in Google. And you pretty much know what's in there, but every once in a while, like you may come across something and be like, I'm going to look that up. And so I've been very fortunate that Patients I may have worked with years and years ago got to a good place, but then they reach a new struggle and they'll be like, hey, I don't know if you remember me. I'm like, of course, and because I'm a behaviorist, I always joke that you'll pass like an AP psychology exam after working with me, just kidding, because like I do, I want people to understand the principles of behavior and all that so that they can then apply them for themselves and they don't need to come and lay on my couch every day for years on end and let me try to explain things for them. [00:22:30] Jill Brook: Can I ask what it means when you say behaviorist... [00:22:34] Dr. Alissa Sheldon: oh, I love getting to talk about this stuff. And I always joke, my dad was also a behavioral psychologist. So I, for anybody who knows behaviorism, I joke that I was raised in a Skinner box. Cause BF Skinner was like the guru to behavioral psychologists. But ultimately, the way it works in behavioral psychology is there are a certain set of principles. Like everybody always remembers Pavlov's dog with the bell and all that and or they'll think like, oh, punishment, reinforcement. Yeah. All of those principles have to do with laws of behavior. And so you know, oftentimes I'll talk with patients and I'll say, Just because we don't know how to calculate gravity does not mean it doesn't affect us. And so just because we aren't all out there studying principles of behavior doesn't mean they don't still, you know, impact our day to day. So part of what I do is teach people things like If you can identify behavior, say, very often the behavior and the consequence are easy for people to identify. So, if the behavior is you eat mushrooms and the consequence is you have anaphylaxis, right? You think, oh, I don't want to do that behavior again. Where it gets a little sticky is prior to engaging in that behavior, there's an antecedent. What led up to you thinking? Maybe today's the day I should try the mushroom. Maybe I shouldn't. And once people start to understand the full scale of what goes into it, then you can start to control it and modify it. I know I'm getting like ultra nerdy, so I apologize. Most of your listeners are like... Oh, maybe NPR is back, but no, [00:24:20] Jill Brook: I think what you're saying is if you start to sort of like identify the series of events that lead to you being miserable after eating mushrooms. You can identify some of the earlier things ... [00:24:32] Dr. Alissa Sheldon: Was the person thinking, oh, I'm never able to try new things, you know, I'm tired of not being, I should just do it. And did that then cause them to want to engage in a behavior that could technically be risky? The positive, the flip side is. If you do something and the consequence or the outcome is, is a good or positive one, you can also then determine, oh, okay, what were the steps that I took to get that positive outcome? I don't know if I'm explaining it super clearly, so I apologize in advance. [00:25:08] Jill Brook: No, I think that it does make sense, and what's interesting to me is that maybe it's this way in a lot of areas, but at least in this area, sometimes it can be very, very fine gradations, like if you say I'm gonna throw caution to the wind, I just wanna be a normal person tonight, I wanna be polite, and so I'm gonna eat whatever my hostess serves me. I have done that a few times, and oh man, at 2am when you're waking up and you're not sure if you need to go to the ER, that's not fun. So okay, so that didn't work, so now I'm gonna try the opposite. I'm only going to eat things that I make for myself. Well, now I'm antisocial and isolated and lonely and a shut in and that's not good either. So great. Okay, now I gotta like explore all the space in the middle and figure out what works. [00:25:56] Dr. Alissa Sheldon: You've identified exactly where that work occurs. Because ultimately either outcome is not ideal for you, right? You wouldn't want to be a shut in and you also don't want to wind up in the ER if you can avoid it. I mean, maybe some people do, but I would assume most of us don't. So. What the work then becomes is how do we figure out how much of your environment are you able to control while at the same time meeting your needs and they shouldn't have to be mutually exclusive. I'm sure my colleagues who are allergists. Would say no, get tested. But so obviously of course, you know, have your allergy testing. But again, you're right, there's only so much of the environment we can control. Like, so for patients who have celiac I know there can be cross contamination with gluten in places and sometimes you think you're doing everything the right way and that's still gonna occur. Yes, I mean. In general, in life, obviously we can't control everything but if you can say, you know what, I'm going to go to, to this restaurant and I'm going to ask if they have a gluten free menu, at least you're taking some steps to try to control the risk. And I think realistically, that's a big part of what my patients and I, what we work on is trying to find that middle ground where you can meet your goals, live a fulfilling life, and still understand and respect your limitations. [00:27:36] Jill Brook: And it sounds like from what you're saying, it's only natural that you have some psychological impact from all of this because yeah, it's scary doing new things that have gotten you in the past. And yeah, it sucks to not do things you want to do. And [00:27:53] Dr. Alissa Sheldon: Exactly. I'm so glad that you said that because yes, if I have a patient who's a type one diabetic they're not going to be expected to go to a party and be like, yes, I'll have five pieces of cake and I'll have a goodie bag of candy. Right? If they said, Oh, no, no, no, I have to, everyone would be so respectful and say, Oh, of course, be careful. And so I hope that as we start to normalize our experience with POTS, dysautonomia, I think of them all as fruit off the same tree, whichever piece you pick that yes, that if we understand and recognize This is being a valid thing. Other people take their cues from us, and they will recognize it as being valid. [00:28:48] Jill Brook: So that brings me to my next question, which is part of the gaslighting that goes on is in the form of people who assume that somebody wants to have these symptoms, or somebody wants attention, or somebody doesn't want to feel better, or they're not doing everything they can. And my question for you is, Is that a common occurrence in the world of psychology? [00:29:08] Dr. Alissa Sheldon: Yes, you're right. There is a diagnosis of malingering, or like sometimes patients will say like, you know, oh, they told me it's psychosomatic and I would say that I've yet to come across a patient that is Dealing with this whole complex medical challenge and the way we look at it is we look to see how are they benefiting? What's the quote secondary gain? If a kid says, oh, I can't go to school today because there's a big test. Okay, then, you know, The kid may or may not be sick, but chances are they're engaging in that behavior because they want to avoid something else. I've yet to find anybody that comes to me with these symptoms and has any evidence of secondary gain. If anything, it's the complete opposite. They would do anything to get rid of these symptoms, so much so that, like you identified, they even put themselves at risk rather than draw attention to themselves. [00:30:19] Jill Brook: So that's interesting and I guess that is encouraging... [00:30:22] Dr. Alissa Sheldon: be like, yeah, I got nothing to do. I might as well have a syncopal event or need a bone marrow biopsy. Sure. I got a, I got a Thursday free. Yeah. Yeah. I have not, I've not met those people. Cause yes, I do sometimes get patients sent to me for that, you know, they'll say malingering or psychosomatic , or, oh, they're just anxious and, and if a patient comes to me and of course, everybody's got anxiety at one time or depression depending on what their life circumstances are. But if we don't identify any way that it's really benefiting that person, then that's where I say very often, I will sort of kick it back to the medical colleagues and be like, listen, You know, you may think that this patient who's throwing up all the time is doing it for attention, but I can tell you, this kid does not want this attention. They do not want to be throwing up all the time. And more often than not, I will get a follow up, a piece of information which will show, oh, yes, you're right. This person had, you know, Barrett's esophagitis or, you know, Crohn's disease and sometimes my colleagues will be like, are you psychic? And I'm like, no, I just know what should exist within my purview, my scope of practice and what is beyond that. And if I've got a patient who's telling me I really, really wanted to stay at that slumber party, but I couldn't stop throwing up, then that's not benefiting that child. And they wouldn't want to experience that symptom if they didn't have to. [00:31:59] Jill Brook: Yeah, it's funny because as you say that, what goes through my mind is so clearly your first reaction is to trust your client. And if they say they wanted to be there, you believe them. I guess my question is, there seems to be medical professionals whose instinct is to believe patients. And then there's It's others who their instinct is to have such low trust in what patients are saying, and I don't know if you have any thoughts on that or any tips for how to be a more credible [00:32:35] Dr. Alissa Sheldon: patients... that's such, I mean, I could probably talk on that forever. But I remember even a long, long time ago when I was a postdoc they had psychology postdoc fellows come and we trained first year medical students in how to take histories. And it wasn't because we were, you know, Grey's Anatomy, it was because we had to teach basic things like make eye contact, listen to what the patient is telling you. Don't just automatically assume, Oh, you know, lipids elevated, it's going to be this. And I remember being so grateful to have that opportunity. And again, I think the majority of practitioners really do want to solve a puzzle. They want to understand. There are so many constraints now. I know I live in the real world. But like the average primary care physician gets, I want to say like around seven minutes per patient. And in that time, the amount of things they have to assess and document is exorbitant. So, yes, they may not have the time to sit and really listen to, Oh, well, okay. So when you went swimming, you noticed that afterwards you started wheezing and your skin started to flush? And I feel bad for my colleagues because I know the pressures that they're under. And I will say that a lot of my patients who have found, especially, I always say like your primaries, like your quarterback of your team and those that have found really good quarterbacks very often nowadays, they're concierge or don't take insurance because If they want to sit with you and spend two and a half hours taking a history, they can do it. That is not the case if they're working within, I would say, more traditional confines, right? [00:34:31] Jill Brook: Yeah. And I think it's not a coincidence that some of the great specialists are no longer taking insurance and they just can't. Yeah. Well, I could just talk to you all day. It's so much fun. But I want to be mindful of your time. is there anything else that comes up frequently in your triad patients that [00:34:51] Dr. Alissa Sheldon: A couple of things, one, you hit the big one, which is that patients ... they have been conditioned or shaped not to trust themselves. And so, yes if I could do nothing else but to encourage everybody to be their own advocate and to know that what you're experiencing is real, even if the blood test didn't support it, you didn't have a high histamine. Get some like CCI cervical instability patients who have symptoms for the longest time and they're told, Oh, but your MRI looks normal until they do say an upright MRI. And then they're like, Oh, who knew you had a Chiari, you know? And, and so just because we can't accurately measure something does not negate its existence. So I would. So strongly encourage patients, know that whether you want to or not, you have to be your best advocate, which I know can be hard, especially when we don't feel well. So second part to that is try to find, even if it's just one other person in your world, that can be your backup. I joke that when somebody wants to like go, you know, to a bar and they want to meet someone, they bring a wing man or a wing woman. So when you go to a doctor's appointment, if feasible, you bring your wing person and it can be just somebody on the phone or FaceTime or physically present if that's possible. I know it's not always the case. And the other thing too that I encourage patients to do and this becomes a little more didactic, but in terms of self advocacy, if you know you're going to go into a medical appointment and you cannot predict who this provider is and how they're going to listen I encourage them to you know, create almost like an outline and I do this with patients where we will document and they write it up almost like, you know, a note that would be in the chart. And so this way they come in and they hand it to their practitioner and they say, you know what? I know I'm a complicated presentation. Read this at your leisure, but this is what I'm dealing with. And I've yet to have a patient report back or a colleague of mine. Say that they didn't appreciate that. They do. They're like, oh, thank you data. I love data, you know So when patients can do those things I think the benefits are multiple. One Obviously it increases the likelihood that you may have a useful medical interaction and two I think it Validates. I know I've used that word a lot. I feel like that is so critically important that Patients Know what they're dealing with is real. It is not made up. It may be in their head if they have a Chiari, but But it's not in their head in the psychological sense The psychological sequelae come after. you know, If you are not feeling well and being told there's nothing wrong with you Of course, you're not going to be happy about that if somebody said, I feel yucky and the doctor said, there's nothing wrong with you, and the person said, oh, great, I'm so loving feeling [00:38:10] Jill Brook: yucky And that would be a [00:38:11] Dr. Alissa Sheldon: then they might want to see a shrink for sure. But yeah, and so, to kind of go back to what you were asking in specific because I see a lot of younger patients now there's a lot of, of sadness about imagining their lives going a certain way and wanting to maintain and stay on that path. And not anticipating some of these challenges. So having to figure out how to navigate them and still say, finish school or have a career or if they want to have a family. And so one of the things that patients have told me, and I didn't do this intentionally, it just happened this way, is like, they'll say, Oh, Dr. Sheldon, you're old and you had a family and a career and you're still, and I'm like, yeah, okay, cool. I'll be your example. And so, yes, do we have to get creative sometimes at how we reach our goals? More creative than others, probably, but that doesn't mean, You get this diagnosis. Okay. That's it. Can't do any of the stuff I wanted to do. [00:39:23] Jill Brook: Yeah. Well, it's so great to speak with you and to hear you kind of validate some of these things and to know that you're out there educating your peers and coworkers. [00:39:34] Dr. Alissa Sheldon: So but yes, I mean the hospital that I work out of is here in South Florida. It's a Memorial Hospital West. And I'm pretty sure if they just Google me they'll see the contact information for me. Like I said, I hope if people forget my name and forget everything else, I just hope that the takeaway message for them is that they can trust themselves. What they're dealing with is real. [00:39:58] Jill Brook: Amen. Beautiful. Okay, listeners, that's the last word. Don't forget it. We'll catch you next week. And in the meantime, thank you for listening. Remember, you're not alone and please join us again soon.