Can Mental Patients Also Be Experts?
Who do you think understands more about bipolar disorder: a psychiatrist or a patient with the illness? In this Not Crazy podcast, we discuss whether a patient can be considered a mental health expert without all the credentials after their name. Today we invite writer and bipolar advocate Natasha Tracy — who also has bipolar disorder — to the show to give her opinion.
Would you seek advice from a patient? Join us for an in-depth discussion on mental health patients as experts.
(Transcript Available Below)
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Guest Information for ‘Natasha Tracy- Mental Patient Expert’ Podcast Episode
Natasha Tracy is an award-winning mental health thought leader who lives with bipolar disorder. She is a speaker, consultant and author of the acclaimed book, Lost Marbles: Insight into My Life with Depression & Bipolar. Natasha is a bipolar expert with a Bachelor of Computer Science who works to bring high-quality, insightful and trusted information on bipolar disorder and related illnesses to the public while engaging with the mental health community. Her blog, Bipolar Burble, has appeared on top 10 lists for a decade, and her blog at HealthyPlace, Breaking Bipolar, has won back-to-back-to-back Web Health Awards. She also co-authored a paper that was published in the journal: Primary Care Companion CNS Disorders.
Natasha Tracy was the proud recipient of the Didi Hirsch Erasing the Stigma Leadership Award in 2014 and a patient-advocacy award from WEGO Health in 2019.
About The Not Crazy Podcast Hosts
Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, Mental Illness is an Asshole and other Observations, available from Amazon; signed copies are also available directly from Gabe Howard. To learn more, please visit his website, gabehoward.com.
Lisa is the producer of the Psych Central podcast, Not Crazy. She is the recipient of The National Alliance on Mental Illness’s “Above and Beyond” award, has worked extensively with the Ohio Peer Supporter Certification program, and is a workplace suicide prevention trainer. Lisa has battled depression her entire life and has worked alongside Gabe in mental health advocacy for over a decade. She lives in Columbus, Ohio, with her husband; enjoys international travel; and orders 12 pairs of shoes online, picks the best one, and sends the other 11 back.
Computer Generated Transcript for “Natasha Tracy- Mental Patient Expert” Episode
Editor’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Lisa: You’re listening to Not Crazy, a psych central podcast hosted by my ex-husband, who has bipolar disorder. Together, we created the mental health podcast for people who hate mental health podcasts.
Lisa: You’re listening to Not Crazy, a Psych Central podcast hosted by my ex-husband, who has bipolar disorder. Together, we created the mental health podcast for people who hate mental health podcasts.
Gabe: Hey, everyone, and welcome to the Not Crazy podcast, I’m your host Gabe Howard, and with me, as always, is Lisa Kiner. Lisa?
Lisa: Hey, everyone, today’s quote is from Paul Kalanithi What patients seek is not scientific knowledge that doctors hide, but existential authenticity each person must find on her own.
Gabe: Today, we’re going to be talking about patients as experts because it’s a controversial topic, those of us with lived experience being experts. But at the same time, I think that it’s very relevant, especially with the quote that you just read. Lisa, why did you choose this particular quote?
Lisa: At first, I didn’t particularly like this quote, because it does kind of have that whole, oh, doctors all have the cure for cancer, they’re hiding it from us, you know, that kind of conspiracy vibe. But what it’s actually about is that when people seek out so-called patient experts, they’re not looking for medical information. They’re looking for reassurance.
Gabe: That’s exactly how I heard it, Lisa. I didn’t think about any of this conspiracy stuff, I just thought about this idea that your doctor is sort of handcuffed. They can only give you the scientific information and scientific information is valuable and it’s important and we need it. And nobody is insulting that in any way on this show. But reassurance is also important. Understanding is also important. This idea that where we are going, somebody else has been is also important. And of course, it’s a scary place to be there. And I would kind of like to know what to expect maybe from somebody who’s already walked along that path. I still don’t understand why people can’t have two things. I’m always shocked that the debate is, do we need lived experience support or do we need doctor support or medical establishment supports? Why the hell can’t we have both? Why are they considered mutually exclusive?
Lisa: You know, that’s a good question, and they really very much are. You can have one or the other. No one ever tries to combine them.
Gabe: And I think you’re wrong if you try to have one or the other, you know, look, as a guy who’s living with bipolar disorder, if I get diagnosed with bipolar disorder, I tell my doctor to go F himself and I find a whole bunch of other people with serious and persistent mental illness and we all try to treat each other? That’s going to turn out poorly. But on the other hand, if I get diagnosed with bipolar disorder and I don’t get support for, my doctor can’t prescribe anything for the fact that I’m scared or the fact that people look at me differently or the stigma or the discrimination. I suppose we can discuss that in therapy if I bring it up and I have the words to bring it up. That’s really where I feel that the lived experience or patient experience or the patient expert is most valuable. They helped me put into words what I struggled to put into words. So, when I got that precious, you know, eight minutes with my doctor or 15 minutes with my doctor, I could say I’m concerned about X. And it was perfect. I knew exactly how to phrase it and what to ask for. And I think that made me a more efficient patient.
Lisa: Well, and after all, efficiency is what we’re all striving for in health care.
Gabe: It is. It is in America. I know that sounds funny, but it is. You know as well as I do that doctors will just not sit and talk you off a ledge. They don’t have time. This is managed care.
Lisa: There is an emotional aspect to medical care and to healing that is not addressed, that is completely ignored, and I suppose that is the realm of the so-called patient voice or patient expert, probably the only realm where it’s appropriate.
Gabe: You’ve thought about this a lot, Lisa.
Lisa: I have.
Gabe: You know exactly where you want it to be and you have grave concerns about the lived experience expert going anyplace else.
Lisa: I do. I think often we see not only so-called experts trying to go somewhere else, but people wanting them to. You and I might be putting ourselves in the proper place, but the people who write into us or our customers, as it were, our, should I say, fans,
Gabe: Why can’t they be our fans, our listeners?
Gabe: We could go with listeners, our friends, our dear supportive loved ones on the other side of the earbuds.
Lisa: Yeah, those people are frequently putting us in the wrong place, and it makes me uncomfortable and I’m not sure what to do with that
Gabe: Can you give me an example of this? You say they’re putting us in the wrong place. How?
Lisa: All the time, whenever we have Facebook Live or something like that, people will ask questions that we are not qualified to answer. And the number one thing I always think is why are you asking someone on the Internet this? Why are you not asking a doctor this? You’re not even asking a doctor on the Internet. You’re asking two people who’ve already told you they have no medical training. And that happens all the time. We get more of those questions than we do questions that we can actually answer.
Gabe: Now, of course, in fairness, we can answer those questions, the answer is you need have a conversation
Lisa: Talk to a doctor.
Gabe: With a doctor and here are some hints to get that conversation started.
Lisa: That’s not what they’re looking for, though.
Gabe: Well, one, you don’t know that. They keep coming back. Our show is very popular. We’ve never had anybody write in to us and say you’re not helpful. You didn’t diagnose me over your podcast, Facebook Live, public appearance, etc. You do that a lot where you decide that the people that are asking us the question are already wrong for asking us the question. And I’m curious
Gabe: As to why. Why have you decided that their motivation is so either malicious or stupid?
Lisa: Not malicious, mostly stupid, I never think it’s malicious.
Gabe: But why?
Lisa: I think part of it is that I would personally never do this. If I wanted medical information, I would not go listen to some random person on Facebook. Go to a doctor or at a minimum, go to a website run by doctors. It makes me uncomfortable that people are asking us these questions. And every single time, every single time, what I want to say is, I don’t know, ask a doctor. And you’ve actually said to me, look, you can’t answer every single question with, I don’t know, ask a doctor. That makes me uncomfortable because that is the right answer.
Gabe: You say that it’s the right answer, but I’m curious is it the right answer because of your wealth, status, privilege and health insurance?
Lisa: That’s true.
Gabe: Are you saying that you don’t take this route because you have so many better ones? Is this the equivalent of you walking up to somebody and saying, oh, my God, why are you driving a 20-year-old car that Consumer Reports says is a jalopy? What is wrong with you? The correct answer is to buy a 2021 Toyota Corolla, the number one rated. It makes me uncomfortable that anybody would even drive that car. Is the assumption that every single person that’s asking us questions has the ability to, one see a doctor, two understands that that’s the path because we’re all taught good mental health care before we’re sick. Everybody, even people with no mental illness or no mental health issues whatsoever, completely understand what’s happening. So, the fact that they’re asking strangers on the Internet is because they’ve chosen to be stupid and ask incompetent people, not because they’re so new at this, that they just don’t understand what to do or they’ve already asked a doctor, didn’t understand the answer and the doctor pushed them along. And while you’re screaming, be a health care consumer and get a new doctor, they can’t because they’re on case management and that’s the only doctor they get. Is this what you’re saying?
Lisa: But you’re doing the reverse, you’re assuming that all of these people don’t have other options, I don’t think that’s true. I think a large number of the people who are coming asking us these questions are just like us. They’re in a position of privilege. They’re middle class. They’re probably even in the Midwest. And they have the same options we do to go to doctors and get medical care from other sources. And they’re not using it because it makes them uncomfortable to do so.
Gabe: Listen to what you just said, it makes them uncomfortable to do so. So they reach out to somebody to get better information.
Lisa: It’s not better information.
Gabe: Why not? They’re not using the information that they have. It doesn’t matter how good something is if you’re unwilling to use it. Their status right now is that they are not getting help. They don’t understand and they’re afraid to do so. So therefore, that information that they have is clearly not working for them.
Lisa: But so what? Facts and figures and valid information is not working for me. Oh, well then. What am I supposed to do with that?
Gabe: It’s interesting that you have this general attitude, because you believe in de-escalation. You believe in discussion. You believe that they should help you understand that it’s in your best interest, not just to say, hey, you made a bad decision and now you must bear the consequences. You believe this very strongly. Yet when somebody does that in the medical field, you’re just like doctors are deities. The doctor said it. You didn’t listen. You don’t deserve help.
Lisa: No, absolutely not. No, you are completely mischaracterizing what I’m saying. No, I do not think that. Doctors are not deities. In fact, some of them are dicks. But anyway, when you say, oh, but you believe in de-escalation, etc., so that person’s role is to de-escalate. Doesn’t that mean that our role is to educate folks and to say to them, look, stop asking me, go ask someone else? Shouldn’t that then be our responsibility and our role to explain to people why it is they shouldn’t be talking to us? But you don’t think that. You’ve never once been OK with me giving that answer.
Gabe: Well, no, that’s not true. That is a complete mischaracterization of me. First off, you said earlier that I said that you can’t answer every question with you need to see a doctor. That is true. I said that. But you’ve taken it wildly out of context.
Gabe: Just wildly out of context. What I said is if somebody says I think I might have bipolar disorder, what should I do? I said that your answer can’t be you should go see a doctor because that’s not complete. What I said that you should say is, listen, you have to consider why you think that and then you have to consider what your options are. Your options are, talk to your general practitioner, to make an appointment with a psychologist, make an appointment with a psychiatrist. You can’t self-diagnose. But if you have a reason for thinking that you’re bipolar, for example, as you used in your question, you must follow up on it. And I want to reassure you that even if you are correct, treatment is available and it’s extraordinarily valuable. I didn’t say that you couldn’t weave in that you need to talk to a medical professional. I said to you specifically when somebody says, I think I might have bipolar disorder, what should I do? And you deadpan say, go to a doctor. That’s not helpful. They’re not going to listen. You think you’re the first person that told them that?
Lisa: Maybe. We might be the first people who’ve told them that. If you needed medical information, why would your, why would any stop, be two random podcast hosts on the Internet? But aside from that, it seems to be many of these people’s first stop. I find that disturbing.
Gabe: I disagree, the very fact that they think that they have bipolar disorder means that they’ve given this some thought, they’ve done some Googling. They’ve probably talked to somebody who realistically in our society was probably not encouraging. That is what I believe. I believe that when somebody gets to us, they’ve already talked to their circle. They’ve already talked to
Lisa: Do you really think that?
Gabe: Yes, I do. Because they found us. How did they find us? What did they Google? We are not so public that you just stumble upon us in the mall. You had to have key words to find us. We’re not Joe Rogan. You don’t just bump into us. It takes effort to find Gabe and Lisa. As much as I want to pretend that we’re worldwide famous. Yeah, yeah. I go in public and if I say Hi, I’m Gabe, the mental health podcaster, you know what I get? Laughed at. Because nobody’s heard of me.
Lisa: That is a good point, I had not considered that. How did they find us in the first place?
Gabe: I understand that you’re uncomfortable that we have a role to play.
Lisa: Yes, I am uncomfortable with this role and I am uncomfortable with the role that other people keep trying to slot us into. Yes, and that’s the best word I can give. Uncomfortable.
Gabe: I still maintain, Lisa, that it’s interesting that you feel that way in this area because you have no problem being a peer or lived experience expert when you hear somebody snoring. You don’t have any medical degree, but you tell pretty much everybody that you run into that they need a CPAP. And then when people say, wait, what’s a CPAP? You answer them, you tell them how it works. You tell them what they can expect from a doctor. You tell them about the sleep study. You tell them why it’s important. Well, that’s not your role. The minute you hear somebody snore, you should say you’re snoring. Go to a doctor. And if they say why, you should say I’m uncomfortable in this role, I will not answer any questions. And you should assume that that answer is complete and that that person will immediately go to a doctor for their snoring and end up with a CPAP.
Lisa: That is an interesting analogy that you have given, I would say that the thing that makes it different is, one, I’m not handing out CPAPs, but neither are you.
Gabe: Yeah, neither am I. I’m not handing out medicine, diagnosis, nothing.
Lisa: No, you’re not, but so many of the people we come into contact, other so-called patient experts are.
Gabe: Then say that, just like you said earlier, some doctors are jerks. Yes, you didn’t say all doctors are jerks. You didn’t say the medical field is filled with egomaniacs that misdiagnose you. But you did say that some did. And you did say that there’s bad therapists, there’s bad doctors, that you need to be a health care consumer. Say that. Why are you saying that all peer advocates or that all lived experience experts or that all patient experts are bad because you’ve ran into some bad ones?
Lisa: I guess the thing that makes it for me is that I feel like it’s not aberrant in our, let’s call it field, the other so-called patient experts we talk with, more often than not, they are assuming the wrong role. When you say, oh, some doctors are jerks. Well, yeah, but they are, in fact, aberrant. That is not the majority of them. Most of them are OK. I don’t feel like with patient experts it’s that way. I think it’s almost the reverse, that most of them are not OK. And there’s only a few that are. Most of them are going way outside their scope of practice. And it makes me uncomfortable. It’s so common. It’s so prevalent that it’s basically the norm. So, I almost feel like it just needs to go away entirely.
Gabe: I do agree with you that there are a lot of bad apples. There really are. And people like us, Lisa, we work really, really hard to expose them and get them out of our industry.
Lisa: But our industry is full of them. There are more of them than there are of us. So, at what point do you just ditch the whole industry?
Gabe: Never. Honestly never. I understand what you’re saying, Lisa, but ditching the whole thing I don’t think is the answer. For example, take American history. At one point in our history, there were more people who believed that women should not be allowed to vote. But the vocal minority worked really hard to establish that that was bullshit and they were right and they changed those people’s minds. That is what I feel being a mental health advocate is. Deciding who we are, where we belong, what we’re good at in educating the public on what to look for.
Gabe: Lisa, you and I have different opinions on this, and for what it’s worth, I think that the conversation is good, but we need to just settle it. And I’m sort of having a fanboy moment here because we asked Natasha Tracy to be on the show. Now, Natasha Tracy is a bipolar advocate. She’s been around longer than I have and I’ve been around going on a decade now. She’s a patient expert. She is a subject matter expert. She is a bipolar advocate. She’s a mental health advocate. She’s written on the lived experience. She’s written about bipolar. She has done tons of work in the mental health field. She is a preeminent patient expert and we’re very excited to have her on the show. Natasha, welcome to the Not Crazy podcast.
Natasha: Hi, Gabe. Hi, Lisa. Thanks for having me.
Gabe: We are super excited to talk to you for a number of reasons, but the biggest one is because I want to hear your insights on a common problem that we have in mental health advocacy, and that is you and I. And Lisa, I always forget Lisa, but we want people to get information from experts.
Natasha: Yes, absolutely.
Gabe: Yes. And it’s easy to tell certain experts because they’re like doctors or licensed social workers and they have letters after their names or they have some governing body that watches over them. But, Natasha, you and I, we’re patient experts, which means nobody is watching over us. But I would bet that if I said, Natasha, you’re no expert, nobody should listen to you, that you’d come out swinging.
Natasha: I guess I’m of two minds about that, right? I always tell people that everything I say should be double checked, everything I say should be discussed with a health care practitioner. So in that respect, yeah, no one should listen to me. On the other hand, I do know more about bipolar disorder than most people on the planet, including doctors. I’m an excellent resource when it comes to all things bipolar and depression.
Gabe: You’re not kidding, your research on the topic is legendary, it’s excellent, and I could probably steal it, make up a fake doctor’s name, put it on there, make up a bunch of credentials, and nobody would be able to figure out that it was a fraud. Because if you compared it to something you’d read in a medical journal done by a Ph.D. or an M.D., it would stand up, but.
Lisa: But that doesn’t have anything to do with Natasha’s own experience or illness, with her being bipolar or having depression, that would just be the same case with any devoted researcher.
Natasha: I think, though, there is a really big difference.
Natasha: Between when I research a subject and when I write on a subject and when a standard Ph.D. or someone like that reads and writes about a subject, and that, of course, is experience. Right? I come from a place where I’ve experienced many of the things, if not all of the things, that I write about. And so when I put together information, it’s in a way that I know it’s going to be valuable to other people who are going through the same situation. And the thing about a doctor is they typically can’t do that because they can’t get inside the brain of a patient. I can’t get inside the brain of a doctor, to be honest, but I can get inside the head of other patients, which is why patients find the work so valuable, because it’s like I’m in their head.
Gabe: Because you’re in your own brain, you know what we want to read about, because you are, in fact, us,
Gabe: But for every Natasha Tracy, and even for every Gabe Howard, there’s a thousand people that are writing about living with bipolar disorder or depression or schizophrenia or psychosis or anxiety, and they get it completely wrong. But their articles, their work is trending, sometimes at the same level as yours. This makes me sad and usually angry. But we’ll just go with sad. How do you resolve that? Because for me, what I say is no, no, no, you shouldn’t listen to them because they’re patients. And then here we are, because I’ve just knocked myself out as well.
Natasha: When people ask me what it is I do, I say I’m a subject matter expert in bipolar disorder. And yes, I live with it, which gives me additional insight. But that’s not actually what makes me an expert. It’s actually because I have spent 17 years researching the subject. So when you talk about the average patient’s perspective on any mental illness, they haven’t done that work. They may have even lived with it for 17 years. And it’s not the same thing. It’s not the same thing as actually researching an illness and knowing not just how you experience it, but how other people experience it, how doctors experience it, how therapists experience it. It’s about getting a broad range of knowledge and it’s about understanding that, while I do have this expertise, I also don’t have all the answers. The people who you should not listen to are the people who claim to have the answer, because those people are always wrong.
Lisa: So how do you get that out there? How do you let people know that you have this background, you have this research, that you’re not just? Because, yeah, they’re a dime a dozen. There’s a thousand people online that have bipolar disorder and know the miracle cure.
Natasha: Right. So I think that for me, there’s two really key things, the differentiation between my work and someone else’s work. And so one of them is simply my body of work. If you want to know about me, you can take a look at my blog, which has over five hundred articles on it. You can take a look at my blog on Healthy Place, which also has hundreds of articles on it. Now, between those two things, I have more than a thousand articles on bipolar disorder and you can make a determination from that how much I actually know and understand and whether you find me to be credible. That’s one thing. Another thing is about actually referencing my work. So, citing sources for my work. For example, when I say approximately 11% of people with bipolar disorder die of suicide, it’s not because I made up the number and it’s not because I read the number on some website. It’s because that’s the number that actually is used by medical professionals. 11 percent is what we believe to be the case at this time. That number may change tomorrow, but it’s what we believe right now. And I can cite a source for exactly where that number comes from. So, when you read my work, you see a body, yes, but you also see citations. So I encourage people to click on all of my links to see where does she get that information from? Because if I’m getting that information from some random source that isn’t really designed with any accuracy in mind, well, now you have your answer, right? How reliable am I if that’s a source that I choose to reference?
Lisa: Oh, that’s good I like that point.
Gabe: Natasha, what do you say to your detractors, to the people who say, well, she doesn’t know what she’s talking about, you should only listen to doctors, only doctors have the answers, to hell with patients? Because there’s a growing group of people that are understandably angry at the patient voice because there’s so many unchecked people.
Natasha: It’s completely understandable. There are a lot of people spreading misinformation and a lot of those people are patients, I think that’s an understandable thing to feel and to be upset about. I think, though, that much like every doctor has credentials, some of the doctors are good and some of them are not so good, patients have credentials and some of them are good and some of them are not so good. I believe in doctors very strongly, which is why I tell people to talk to health care professionals, because I believe that everything should go through them. However, it doesn’t mean that every doctor out there is the best doctor out there. First of all, someone finished last in their medical school training. They did.
Gabe: I always say that.
Natasha: That’s the one thing. But another thing is as much as doctors are scientists and they’re trained to think scientifically, some of them don’t end up thinking that way in the long term. So you have people who have psychiatry degrees who are just as nutty as the people who claim that olive oil is a cure for something. They end up being just as irrational as those people. Now, this is not terribly common, but it certainly does happen. So whenever you look at someone, whether they are a person with letters after their last name or not, you do have to judge them on an individual basis. And much like not every person with bipolar disorder is the same, not every patient is the same, and not every voice is the same.
Lisa: Can you tell us maybe a definitive Natasha Tracy answer, what do you think the role of the patient voice should be?
Natasha: The role of the patient voice is very complex because it depends on the patient. So, the first role of the patient voice is to be heard in their health care relationship. Which, of course, is also the first job of the medical voice, which is to listen. That’s the first job and the really important one that patients absolutely must have, which is a voice in their own recovery, in their own treatment. They need to be heard and they need to be listened to. Those are really important things when it comes to the patient voice. Now, secondarily, patients who are advocates, people who are going out and doing something a little bit extra, that patient voice has the ability to start shaping things. That patient voice has the ability to start shaping how doctors speak to their patients in general. So, an individual patient can influence a single relationship, but someone who influences more people can influence relationships in general. So, I think that the patient voice can be used in a positive way to improve how companies interact with patients, to improve how doctors interact with patients, basically to improve the health care system in general, because they’re the ones with the most experience with it.
Lisa: Now, you’ve been doing this for a long time, acting as the patient voice, do you see changes?
Natasha: I do think things have changed. Patient voices are more heard today, certainly than they were 15 years ago. Part of my experience, of course, is colored by my own experience as a patient. I’m more heard today than I have ever been. But that’s also because I’m louder today than I’ve ever been.
Natasha: So, I do think, especially younger, doctors are coming up being more familiar with patient voices and being more familiar with the fact that we have things to add to what to say on our treatment. And I think that patient voices like mine who are influencing other patients, we have made it so that patients almost demand that they be listened to more frequently. So, there has been a shift in what doctors expect and there’s been a shift in what patients expect. And I think also there’s been a shift in companies saying we’re going to do whatever we’re going to do and we don’t really need your input, thanks. I think there’s been a shift away from that to actually listening to the patient because they are the consumer and because the consumer does have power over large companies to say, we’re going to support you, we’re not going to support you. Companies actually do elicit more patient opinions today than they ever have before.
Lisa: That’s interesting to hear that you do feel like there’s improvement.
Gabe: There’s improvement, but.
Lisa: Well, obviously, it’s not enough, there’s more work to be done.
Gabe: You say it like it’s, well, there’s more work to be done and then the house will be perfect, but
Gabe: It’s not like that. We’re
Lisa: Because it’s unending, it’s never done.
Gabe: Yeah, but that’s so sad. I don’t want it to be never done. But looking around at other causes. I just I can’t believe we’re fighting over this. Hi, we’re sick and we want health care. You know, I don’t know. We should discuss this. This just seems like such a stupid fight. I don’t get it. Do you understand it, Natasha? You’ve been doing this longer.
Natasha: Your frustration is understandable, but I because I’ve been doing this so long, my frustration is like elapsed.
Lisa: That’s a smart way to say it.
Natasha: I understand why you’re frustrated, but I also understand that if you allow frustration to tint what you’re doing, I’m not sure that that’s the most effective way to get things done. It’s like people who want to reform the system versus people who want to throw out the system. There’s a big difference between those two people. I’m not saying one’s right and the other’s wrong, but my opinion is you work within the system to make incremental changes until you get to the place where you want to be rather than throwing everything out and starting again. I think that it’s a more reasonable thing to do. Throwing everything out and starting again sounds good. It’s just that in reality, it’s not. It’s too difficult and you will make too many mistakes along the way and you’ll end up in a place that you will need to change again.
Lisa: That’s humorous because Gabe and I have that discussion constantly with almost the same words.
Gabe: Yeah, yeah, you know, I have found that it’s better to make these small incremental changes around the margins that ripple inward and have huge effects. And I don’t know if it’s working or not. Sincerely, it’s very hard from our vantage point to see where we are. And some changes don’t come in until you get a guard change.
Lisa: And we’ll be right back after these messages.
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Gabe: And we’re back discussing the validity of patient experts.
Lisa: Well, you said earlier in the same way that doctors have credentials, patients also have credentials. What do you mean by that? What credentials? And then what are your credentials?
Natasha: For me personally, it’s a matter of experience, what I’ve published and where I’ve published. So I’ve had everything from a coauthored scientific paper published to a book published to, as I said, over a decade’s worth of writing published. Those are my personal credentials. I also happen to have a Bachelor of Science if anyone cares.
Gabe: I care. We care.
Natasha: Yeah, I mean, if anyone cares, but I, but those are my credentials. Someone else’s credentials are different, but those are mine. You can take that into consideration and decide that those credentials don’t matter to you or you can decide that they do matter to you. And either way is really fine, because you know what? Lots of people who have followed me for many years consider me to be very reliable and a major expert in the field. And if you don’t agree, that’s OK. You’ll find someone else that you feel that way about.
Gabe: Well, let’s talk about that for a moment. There’s a definite trend, at least in America, there’s a definite trend of here is my opinion, and I want it to be a fact. So, I will find somebody agrees with me and then I will make it a fact. And what you just said there is if somebody disagrees with you, they can go find somebody that they agree with. But a fact is a fact is a fact. I understand difference of opinion, but I’m really struggling with this idea that people can have a difference of fact. How do you handle that?
Natasha: For me, when you come across someone who simply wants to deny facts or deny science, because certainly there are many commenters who want to deny psychiatry and science and those types of things.
Gabe: Yeah, reality.
Natasha: That happens. Yes, reality. That’s correct. So, if you come across a person like that, typically there is no speaking to them. You can talk to them all you want till you’re blue in the face, if that’s something you’re into. It’s not what I’m into. I’m into providing information to the people who are interested in having it. I am not interested in having a huge argument with someone who is never going to take my perspective, because they’re never going to understand science. They’re never going to believe in science. That’s never something that is going to work for them. So for me, I think that arguing with those people is time wasted and it’s time that I couldn’t spend on people that I’m actually helping. So to me, they’re not even overly relevant.
Lisa: You know, we look through your blog and you see a lot of people making comments about how you’ve sold out, you’re just in the pocket of Big Pharma. You’re just one of them. You’ve become the man. What do you say to people who say things like that?
Natasha: Well, first of all, if I sold out to Big Pharma, I’d have a much nicer apartment.
Lisa: That is what I always think.
Natasha: That, you know, that’s the first thing. No, I think that just because I agree with psychiatry in large part, just because I believe in science, does not necessarily mean that anyone is paying me to think that way. That’s an answer and a solution that I personally have come to and that I believe in because I’ve always believed in science. I have a bachelor of science. There’s a reason why I have that. And it’s because I’m a logical thinker and I believe in that kind of thing. In terms of people saying that I sold out, that’s certainly a perspective, if you want to take that. But in my experience with things, I’ve never personally cashed a check from a pharmaceutical company, for example. It’s never happened. So, it’s kind of hard to make that case that I have sold out because there’s no money to actually suggest that.
Lisa: Ok, well, I don’t know that it’s so much about money as that they feel that you’ve been co-opted or that you have been corrupted in some way. You had your own original voice. You were thinking correctly previously, but now you’ve been exposed to too much science, too many doctors, etc. And you’ve now come to the wrong conclusions and are betraying your fellows.
Natasha: Hmm, that’s an interesting idea.
Lisa: You know how it is, you just see so much science, you just start to believe science, you know?
Natasha: I guess that one of the things that I would say is that perspectives do evolve over time. I used to have it actually as part of my disclaimer, which is that when I write something, it is accurate at that moment. It reflects how I feel at that moment. It reflects what I think at that moment and it reflects the state of science at that moment. But five years from now, I may think differently. The science may think differently. There’s a lot of things that can change in five years. In terms of if you liked me five years ago and you don’t like me today, I understand. I’ve evolved as a human and you may not have liked the direction in which I’ve gone. And that’s actually totally fine with me. You know, I am not about bringing everyone on side to what I think. And this is not my job, OK? You know, I heard a writer once say something really brilliant, which is that you don’t write for the people who don’t read your book. What the person was trying to say is all those detractors that you have out there, you’re not writing for them. You’re not speaking for them. You’re not doing your job for them. You’re doing your job for the people who buy your book, for the people who read your work and for the people who want to have you speak at a conference. Those are the people that you’re actually doing the work for. So, the more time you spend on your detractors, the less time you have to spend with all the people that you’re truly helping.
Lisa: Well, but isn’t that just another way of saying that you’re preaching to the choir?
Natasha: I think that my work is exposed to many, many people, some of them are part of the choir and some of them aren’t. And it’s not to suggest that I’ve never changed anyone’s mind because I have. But those minds are open to begin with. Those minds are looking for solutions. They’re looking for answers. They’re looking for information. And they find me and it fits what they’re looking for. They weren’t the choir, but let’s say they became part of the choir once they read some of my work. That’s different than saying that you’re preaching to the same five people over and over again, which is not the case.
Lisa: When you say that you have this large audience that you can influence, what type of influence do you think you’re having over them and are you comfortable with that?
Natasha: Influence comes in many forms. For example, one of the things I don’t do is I don’t talk about my personal medication history. So I don’t say, you know, I went on this medication, it was the best thing in the world and its name is blah. I don’t do that. And that’s because I do have enough influence, and I do know that people will read that and go to their doctor and say, I want blah. It was really successful for someone online. And I know that I have that influence, which is exactly why I do not do it. I do not believe that that is how treatment decisions should be made. Thus I do not feed into that cycle. I do know that I have influence over people’s decision to get help. This is certainly something that has happened on many occasions through my career. People have credited me with saving their life. Now that’s a massive amount of influence on people. That also is not my job, but it’s certainly something that I’m cognizant of. I’m cognizant of the fact that someone will read my work and then say, OK, maybe that’s something I can look into. Maybe that’s a new perspective I can try. Maybe there is a doctor that can help me and so on and so forth. That’s something that I know happens because people actually write to me and tell me that’s what has happened for them. It’s a very powerful influence. Now, can I tell people what style of jeans to wear? No, I can not do that.
Lisa: Are you trying to influence people in a specific way? Is there some ultimate goal that you have?
Natasha: So I have always believed and believe to this day that my goal is to help one person. That’s my goal. As I have gotten more prominent, yes, I have an influence over a fairly decent number of people, but my goal is to help one person. For one person to read my work and say, that’s interesting. I never thought of that before. That’s my goal. It’s to be very authentic to the point where someone can read my work and say, yes, I respond to that because I see myself in it. That’s what I’m aiming to do, is to have one person actually see themselves in me. Influence is something that comes simply because so many people do respond to your work, right? It’s a byproduct, it’s not a goal. My goal has never been influence. My goal is to help one person. And if that happens, that’s enough for me.
Lisa: So I’m assuming you get a lot of feedback, what kind of feedback do you get then? Is there any that you’re?
Gabe: Yeah, what’s your favorite e-mail? Like, what’s, in your entire career, what is your favorite email that you’ve ever gotten?
Natasha: I do get feedback from people who say things like they never responded to a single person online, they never responded to a single piece of writing. They never responded to anything until they met me. I think that’s my favorite piece of feedback, because what that speaks to is authenticity. And what that speaks to is, I like to think quality of work. I’m just going to say that I like to think my work is good. So that’s my favorite thing when people say that to me. Also, when people say that the book is the best book they’ve read on bipolar disorder, that’s a great piece of feedback, something that will certainly go in my ego file forever.
Gabe: Yeah, and it should.
Natasha: It’s a beautiful thing when you are not thought of as a person in a sea of work, but actually someone who stands out for whatever way. In terms of the most negative piece of feedback I ever got, it was someone saying that people like me should be killed and go to hell. That was the worst piece of feedback I ever got. And I have had more than one death threat. So more than one person certainly has thought that about me. And so it’s a little scary when someone feels so strongly about your work in such a negative way. That’s a scary thing. You don’t want those people to take it a step further. Most people are never going to take it a step further than writing you some nasty comments, but you never know when someone will. So those are scary comments, yeah.
Gabe: This is where our criticism differs based on our gender. I remember
Gabe: I was sitting in a room with a bunch of, you know, influencers, writers, podcasters on the topic of living with mental illness. And I was young and naive. And I said, oh, yeah, I hate it when people tell me that I suck in email. And it was predominantly women. And they said, yeah, we hate it when they threaten to sexually assault us. And I was like, wait, what? And they’re like, oh, yeah. And they just the death threats, the sexual assaults. Suddenly I didn’t mind my email box so much. I’m assuming that this happens to you.
Natasha: I try to ignore those things, to be honest with you. Some of them have stayed with me when they’ve been particularly nasty, and I certainly don’t like it when people make it really personal. And also, if they’re not sure what to say about what you’ve actually said, then certainly it’s easy to attack you personally.
Lisa: It’s a way to derail.
Natasha: It’s a way to derail. It’s a way to hurt you. That’s what they’re trying to do. So don’t let that happen. Don’t let that hurt you. I tell people who, quote-unquote, want to be me, and there are some people who do. They’re silly. But I say you have to grow a very thick skin because there are people out there who certainly are going to want to hurt you because of what you do, because of what you say, and possibly because of the fact that you’re female. Yeah. You need to grow a thick skin and you need to know it’s coming, because it’s coming.
Lisa: Well, Natasha, thank you so much for being here with us. So before Gabe and I let you go, tell us about your upcoming master classes.
Natasha: Yes, I’ve been doing master classes now for a few months because. I’ve been doing a variety of subjects in a line of what I call Get Real. It’s real talk about real subjects that real people care about. I don’t want fluffy stuff. I don’t want politically correct stuff. I want stuff that is actionable and I want stuff that is real. My two upcoming master classes are one of them has to do with treating treatment resistant depression. And this is one area that I really feel health care falls down in, which is the depression area for bipolar disorder, where treatments seem to be so inadequate so often and patients are left to languish and suffer. And I’m also holding a master class on how to have difficult mental health conversations. Specifically, if you are a person with a mental illness, how do you have conversations with other people about your mental illness? And if you do not have a mental illness, how do you talk to people with a mental illness about mental health challenges? That’s what we’re going to be talking about in that particular master class. And there will be more after.
Lisa: Ok, if our listeners want to sign up for that master class or get more information about you, where can they find you?
Natasha: You can find me at NatashaTracy.com and you can find my book Lost Marbles: Insights into My Life with Depression & Bipolar on Amazon.
Gabe: Natasha, thank you so very much, really appreciated the conversation.
Lisa: Yes, thank you.
Natasha: Thank you, Gabe. Thank you, Lisa. Thank you for having me on.
Gabe: So, Lisa, was I right? Was Natasha a badass?
Lisa: Yes, she is pretty badass. She is. I’ve never actually met her, so that was nice. You see her name everywhere.
Gabe: You do, and she’s one of the people that I found when I was looking for resources, so, you know, before I was an advocate, when I was just trying to get well, I read her writing.
Lisa: I’ve seen her name since long back, I remember her from back then.
Gabe: She’s timeless. That’s really what we’re going for. Lisa, did Natasha give you anything to think about? Did she change your mind? Did she give you pause at all?
Lisa: I don’t know, I guess I would say she hasn’t changed my mind in part because I’m just not sure what my own mind is on this. I don’t really understand my own opinions on this. I haven’t worked it out in my own head yet. I don’t know why I’m having trouble doing so.
Gabe: I love that you are a mental health advocate. I love that you have a podcast. I love that you answer people’s questions. I love that you’ve worked with me for a decade, and yet you’re still unsure of the role of the patient. You’ve
Gabe: You’ve put a lot of time, energy and effort to getting your voice heard, but you’re not sure that anybody should actually listen to it. That’s confusing to me.
Lisa: I’m conflicted. I know it’s not sensible, I’m still uncomfortable with the entire concept, so why am I doing this? I have no idea. I can’t explain it. I don’t know why, but I’m just overly comforted by the idea of expertise. I like it when people have letters behind their name. It makes me feel, I don’t know, safe, secure, better. So when people who don’t start telling me things, I don’t like that.
Gabe: I agree 100%. Nobody is denying that. Again, if you only listen to patient experts, you’re going to get in trouble. But, you know, my dad is not an artist. He’s not an interior designer. But he gives great ideas that I can then ask the expert about and incorporate into the final design. I would not let my dad paint my house. He sucks at it, but he is kind of decent at picking colors. But I got to tell you, he’s got like no art school behind his name. Should I start ignoring him?
Lisa: I don’t know. I don’t know why I feel this way, because it’s not as if I’m all that conventional to start with. It makes me uncomfortable when people who I feel like do not have the necessary credentials start doing stuff. But why is that? The credentials themselves are quasi arbitrary.
Gabe: I, too, am uncomfortable with the idea that we are devaluing education.
Lisa: Exactly, yes,
Gabe: And experts.
Lisa: And it’s a cultural thing where we’re devaluing truth and science and expertise.
Gabe: I am extraordinarily uncomfortable with that and I do not like it.
Lisa: There’s this heavy strain of anti-intellectualism
Lisa: In our culture, and I feel like this is almost an offshoot of that, because instead of going to the experts, the people who have studied this for years or even decades, you’re turning to us because it makes you feel good emotionally, not because it’s a good thing. So, yeah, I see that as part and parcel of all the problems we have now. It prioritizes feelings over facts and you could just look around to see all the damage that has done and is doing.
Gabe: I agree that is disturbing and wrong on every level, but I have to say emotional support is not a bad thing. Study after study shows that patients do better, especially in the mental health field, if they have emotional support. And as you know, especially when it comes to severe and persistent mental illness, you have to be on board. You have to want it. You have to work hard. You have to self-report your symptoms. And if you don’t understand what’s going on, you’re not going to do that. Study after study after study shows that people who are involved in their own care and feel emotionally connected and cared for and, well frankly, feel good about their treatment do better. Are we going to deputize doctors that have never been through mental illness to follow us around? Do you think some of your discomfort is in society telling you that this is not your spot and that you can’t carve out your own niche because after all, it’s not your place?
Lisa: Yes, yes, but I’m not convinced the society is wrong. I feel like it’s not our place. I don’t know what our place should be. Yeah. I don’t know why this is such a dissonance for me.
Gabe: I suppose that’s a confusing thing to me, because I have been in the room, remember, Lisa and I used to be married, I have been in the room when Lisa Kiner, no medical training whatsoever, told a doctor that her diagnosis was wrong. You actually said to that doctor, you are wrong. I have sleep apnea. And the doctor said, I’m looking at the test and no, you don’t. And you said you are wrong and you got up and left. Now, how did you do that? Because if
Lisa: I know.
Gabe: I encourage another patient to do that, you would say that that’s not my role and that’s wrong. But you did it.
Lisa: I know and I don’t have a problem with that, and I do think that’s a proper thing to do. I do not have a problem with this idea that the health care system is way messed up. It needs different things. It does not worry about your emotional health at all. But I’m not comfortable with this idea that we have a role to play. I’m not.
Gabe: Do you think that it is OK to share your experiences so that other people know that they too can stand up to their doctors if they feel that the diagnosis is wrong or be a health care consumer.
Lisa: Yeah, I do.
Gabe: Don’t you see that as part of patient advocacy and being a patient expert, letting people know how to maneuver in the mental health system?
Lisa: When I was uncomfortable doing the live shows where people asked the questions and answering the questions, that was the thing you said, that this was that kind of equivalent that you were just giving people kind of a moral support or a cheerleading. And that was the one thing you said that made me feel better about it.
Gabe: Lisa, one of the most valuable things that you have ever done as a patient advocate, as a patient expert, as a mental health advocate, was teach me about a patient advocate in clinics, hospitals, doctors offices. I did not know this existed.
Lisa: Well, it didn’t used to.
Gabe: Well, I had a very bad experience, as you know. And you said you need to call the patient advocate immediately. And I said, what on earth is that? And I dial the number. I got a patient advocate and all of a sudden things started getting better. I
Gabe: Have said this
Lisa: It’s amazing.
Gabe: A thousand times and I even gave this advice to my father, who was having a very bad experience with pain control after surgery. And it was amazing how quickly these problems were resolved. This just isn’t posted anywhere. And if it is, it’s posted in fine print. It’s very difficult to find, there’s a magazine rack in front of it. That alone, in my opinion, makes patient advocacy and patient experts valuable because doctors weren’t willing to tell us about this, but patients were.
Lisa: Oh, that’s an interesting point. It’s a relatively new thing. I mean, you know, 20 years ago when I was having most of my interaction with health care, these things did not exist. Doctors never used to care about how you felt. They never used to have patient satisfaction surveys. That was never a thing. Things have changed a lot. And I do recognize that that is in large part because of advocates like Natasha and because of this whole movement of the patient voice. And that is 100% for sure, a positive thing. But yeah, I’m still not entirely comfortable with it and I’m not comfortable with our place in it. And I’m not even sure what our place should be.
Gabe: I want to echo the words of Natasha Tracy when she said, look, I don’t care if you believe me or not, in fact, I want you not to believe me. Double check what I’m saying. Look it up, find other sources, read my studies, read my citations. You should not take Natasha Tracy at her word. And she is incredibly comfortable with that. And I want to say you shouldn’t take Lisa Kiner at her word either. You shouldn’t take Gabe Howard at his word. Frankly, you shouldn’t take anybody at their word, not even your own mom. You know, the number of medical things that my mother told me was true, that turned out to be false. My mother still believes that if you eat pizza and then go swimming, you will drown. She just believes this. This is the oldest medical advice that people have passed down forever. That is absolutely incorrect. So, yeah, I encourage you to disbelieve what patient advocates say and do your own research and find out if we know what we’re talking about.
Lisa: Gabe, as you know, I’m uncomfortable with ambiguity, I want things to be black or white, I want things to be certain, I want to know for sure. Right. And the position of the patient and the patient voice is ambiguous. This has not been decided. It hasn’t been settled. Some people think the answer is that there’s no place for it. Some people think it belongs in a place much, much higher than it really does.
Gabe: Lisa, I appreciate you being honest and to our listeners, I appreciate you being honest as well. Tell us what you think. Hit us up at a [email protected] and tell us your thoughts. We are always open. Do you have an idea for a show topic? Want to hear Gabe and Lisa debate? Do you have a guest that you want on the show? [email protected] is where you need to pitch all of those things. Thank you so much, everybody, for listening. My name is Gabe Howard and I am the author of Mental Illness Is an Asshole: And Other Observations. You can, of course, get it on Amazon, but if you head over to gabehoward.com/merchandise, you can buy it there for less money. And I will sign it and we will send you Not Crazy show stickers. Thanks, everybody, for listening in.
Lisa: And we’ll see you next Tuesday.
Announcer: You’ve been listening to the Not Crazy Podcast from Psych Central. For free mental health resources and online support groups, visit PsychCentral.com. Not Crazy’s official website is PsychCentral.com/NotCrazy. To work with Gabe, go to gabehoward.com. Want to see Gabe and me in person? Not Crazy travels well. Have us record an episode live at your next event. E-mail [email protected] for details.
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