Can Psychological Sufferers Additionally Be Consultants?

Would you seek advice from a patient? Take part in an in-depth discussion on mentally ill patients as experts.

(Transcript available below)

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Guest information for the podcast episode "Natasha Tracy – Mental Patient Expert"

Natasha Tracy is an award-winning writer, speaker and Social Media Consultant from the Pacific Northwest. She works to provide high quality, insightful, and trustworthy information about bipolar disorder and related diseases to the public while engaging with the mental health community.

Natasha has written literally thousands of pages on mental health issues. She currently writes two award-winning blogs: Break bipolar and Bipolar Burble, The company was named a top 10 health blog by Healthista, Health.com, Healthline, Medical News Today, and others. Natasha was also presented at the Huffington Post, BPHope, Healthline, PsychCentral, Sharecare and many others.

About the not crazy podcast hosts

Gabe Howard is an award-winning writer and public speaker living with bipolar disorder. He is the author of the popular book, Insanity 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' 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 partnered with Gabe for over a decade to advocate mental health. She lives in Columbus, Ohio with her husband. enjoys international travel; and orders 12 pairs of shoes online, chooses the best and sends the other 11 back.

Computer generated transcript for “Natasha Tracy – Mental Patient Expert” episode

publisher's Note:: Please note that this transcript was computer generated and therefore may contain inaccuracies and grammatical errors. Thank you.

Lisa: Y.You're listening to Not Crazy, a psychologically central podcast hosted by my ex-husband with bipolar disorder. Together we created the Mental Health Podcast for People Who Hate Mental Health Podcasts.

publisher's Note:: Please note that this transcript was computer generated and therefore may contain inaccuracies and grammatical errors. Thank you.

Lisa: Y.You're listening to Not Crazy, a Psych Central podcast hosted by my ex-husband with bipolar disorder. Together we created the Mental Health Podcast for People Who Hate Mental Health Podcasts.

Gift: Hello everyone, and welcome to the Not Crazy podcast, I'm your host, Gabe Howard, and with me, as always, Lisa Kiner. Lisa?

Lisa: Hello everyone, today's quote is from Paul Kalanithi. Patients are not looking for scientific knowledge that doctors hide, but for existential authenticity that every person has to find for themselves.

Gift: Today we are going to talk about patients as experts as this is a controversial topic. Those of us with lived experience are experts. At the same time, I think this is very relevant, especially with the quote you just read. Lisa, why did you choose this particular quote?

Lisa: At first I didn't particularly like that quote because it has something like that, oh, doctors all have the cure for cancer, they hide it from us, you know, that kind of conspiracy. But the real point is that people who visit so-called patient experts are not looking for medical information. They are looking for security.

Gift: That's exactly how I heard it, Lisa. I wasn't thinking about any of this conspiracy, I was just thinking about the idea that your doctor was somehow handcuffed. They can only give you the scientific information, and scientific information is valuable and important and we need it. And nobody offends that in any way on this show. But reassurance is also important. Understanding is also important. That idea that someone else has been where we're going is also important. And of course it's a scary place to be there. And I would like to know what might await me from someone who has already walked this path. I still don't understand why people can't have two things. I am always shocked that the debate is: do we need support from lived experience or do we need support from doctors or medical institutions? Why the hell can't we both have? Why are they mutually exclusive?

Lisa: You know, that's a good question, and they really are. You can have one or the other. Nobody ever tries to combine them.

Gift: And I think you're wrong if you're trying to have one or the other, you know, you look like a guy who lives with bipolar disorder. If I'm diagnosed with bipolar disorder, do I tell my doctor to go and find a whole bunch of other people with severe and persistent mental illnesses and we all try to treat each other? That’s going to be bad. On the other hand, if I am diagnosed with bipolar disorder and I am not receiving support because I am afraid or because people see me differently or the stigma or the discrimination, my doctor cannot prescribe anything. I suppose we can discuss this in therapy when I bring it up and I have the words to bring it up. This is where I really believe that the lived experience or patient experience or the patient expert is the most valuable. They helped me put into words what was difficult to put into words. When I became so precious, you know, eight minutes with my doctor or 15 minutes with my doctor, I could say that I am worried 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: After all, efficiency is what we all strive for in healthcare.

Gift: It is. It's in America. I know that sounds funny, but it is. You know as well as I do that doctors just don't sit down and talk you off a ledge. You have no time. This is managed care.

Lisa: Medical care and healing has an emotional aspect that is not addressed that is totally ignored and I suppose this is the area of ​​the so called patient voice or the patient expert, probably the only area where this is appropriate.

Gift: You've thought about it a lot, Lisa.

Lisa: I have.

Gift: You know exactly where you want it and you have serious concerns that the lived experience expert is going somewhere.

Lisa: I do. I think we often see not only so-called experts trying to go elsewhere, but also people who want to. You and I could put us in the right place, but the people who write to us or our clients, ours should I say fans, so to speak

Gift: Yes,

Lisa: Listeners,

Gift: Why can't they be our fans, our listeners?

Lisa: OK?

Gift: We could go with listeners, our friends, our dear supportive loved ones on the other side of the earbuds.

Lisa: Yes, these people often take us to the wrong place and I feel uncomfortable and I'm not sure what to do with it

Gift: Can you give me an example of this? They say they are taking us to the wrong place. How?

Lisa: Whenever we have Facebook Live or something like that, people will ask questions that we are not qualified to answer. And number one thing I keep thinking is why are you asking someone about this on the internet? Why don't you ask a doctor that? You don't even ask a doctor on the internet. You ask two people who have already told you that they have no medical training. And that happens all the time. We get more of these questions than questions that we can actually answer.

Gift: Now, of course, we can fairly answer these questions. The answer is you need to have a conversation

Lisa: Speak to a doctor.

Gift: With a doctor and here are some tips to get that conversation started.

Lisa: However, that's not what they're looking for.

Gift: Well one thing you don't know You keep coming back. Our show is very popular. We have never had anyone write to us saying that you are not helpful. You didn't diagnose me through your podcast, Facebook Live, public appearance, etc. You often do this when you decide that the people asking us the question are already wrong when they ask us the question. And I am curious

Lisa: Yes.

Gift: Why. Why did you decide that their motivation is so vicious or stupid?

Lisa: Not mean, mostly stupid, I never think it's mean.

Gift: But why?

Lisa: I think part of it is that I personally would never do that. If I wanted medical information, I wouldn't be listening to a random person on Facebook. Go to a doctor, or at least a doctor-operated website. I don't like people asking us these questions. And every time, every time I want to say I don't know, ask a doctor. And you actually said to me, look, you can't answer every single question with a doctor, I don't know. I feel uncomfortable because that is the correct answer.

Gift: You say it's the right answer, but I wonder if your assets, status, privileges, and health insurance make it the right answer.

Lisa: That's true.

Gift: Are you saying that you are not going this route because you have so many better ones? Is this the equivalent of walking up to someone and saying, oh my god, why are you driving a 20 year old car that Consumer Reports says is a jalopy? What's wrong with you? The correct answer is to buy a 2021 Toyota Corolla, number one. I feel uncomfortable that anyone would drive this car. The assumption that every single person who asks us questions has the ability to see a doctor is two to understand that this is the way, because we are all taught good mental health care before we are sick. Everyone, including people with no mental illness or problems, fully understands what is happening. The fact that they ask strangers on the internet is because they chose to be stupid and ask incompetent people, not because they are so new to it that they just don't understand what to do, or that they & # 39; I've already asked a doctor, didn't understand the answer, and the doctor took it forward. And while you're screaming about being a health care consumer and getting a new doctor, because they are into case management and this is the only doctor they get, they can't. Do you say that

Lisa: But you do the opposite, you assume that all of these people have no other options. I don't think that's true. I think a large number of the people who ask us these questions are just like us. You are in a privileged position. You're middle class. You're probably even in the Midwest. And they have the same opportunities that we have of going to doctors and getting medical care from other sources. And they don't use it because they feel uncomfortable doing it.

Gift: Listen to what you just said. They are uncomfortable doing this. So they turn to someone for better information.

Lisa: It's not better information.

Gift: Why not? They are not using the information they have. It doesn't matter how good something is if you don't want to use it. Their current status is that they are not getting any help. They don't understand and are scared of it. Hence, this information that they have clearly does not work for them.

Lisa: So what? Numbers and facts and valid information don't work for me. Well then. What should I do with it?

Gift: It is interesting that you have this general attitude because you believe in de-escalation. You believe in the discussion. They believe that they should help you understand that it is in your best interest not to just say, hey, you made a bad decision and now you must face the consequences. You believe that very strongly. Just like doctors, when someone does this in the medical field, they are deities. The doctor said so. You didn't listen You don't deserve help.

Lisa: No, definitely not. No, you are completely wrong about what I am saying. No, I do not think so. Doctors are not gods. In fact, some of them are tails. 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 it's our job to educate people and tell them, look, stop asking me, go and ask someone else? Shouldn't that be our responsibility, and our job, to explain to people why they shouldn't talk to us? But you don't think so. You never agreed for me to give this answer.

Gift: No, that is not correct. That is a complete misrepresentation of me. First off, you said earlier that when you need to see a doctor, I can't answer every question. This is true. I said that. But you took it wildly out of context.

Lisa: OKAY.

Gift: Just wildly out of context. What I said is if someone says I think I might have bipolar disorder, what should I do? I said your answer may not be that you should see a doctor as this is not exhaustive. What I said you should say is listen, you have to figure out why you are thinking this and then you have to figure out what your options are. You have the option of speaking to your family doctor, making an appointment with a psychologist, and making an appointment with a psychiatrist. You cannot diagnose yourself. However, if you have reason to believe that you are bipolar, for example, as you used it in your question, this is what you need to investigate. And I want to assure you that even if you are correct, treatment is available and extremely valuable. I didn't say that you can't get involved in speaking to a doctor. I specifically told you when someone said, I think I have bipolar disorder. What should I do? And you say go to a doctor. That is not helpful. You will not listen. Think you are the first person to tell you this?

Lisa: Perhaps. We could be the first to tell them that. If you are in need of medical information then why should you be two random podcast hosts on the internet? Apart from that, it seems like the first stop for many of these people. I find that annoying.

Gift: I disagree, the fact that you believe you have bipolar disorder means that you thought about it and googled something. You've probably spoken to someone who realistically in our society probably wasn't encouraging. I believe that. I believe that when someone comes to us, they have already spoken to their circle. You have already spoken to them

Lisa: Do you really think so?

Gift: Yes I will. Because they found us. How did you find us? What did they google? We're not so public that you just stumble upon us in the mall. They had to have keywords to find us. We are not Joe Rogan. They don't just come across us. It takes an effort to find Gabe and Lisa. As much as I want to pretend we're known around the world. Yes / Yes. I go out in public and when I say hello I'm Gabe, the mental health podcaster, you know what I'm getting? Laughed at. Because nobody has heard from me.

Lisa: That's a good point, I didn't take that into account. How did you even find us?

Gift: I understand you are uncomfortable that we have to play a part.

Lisa: Yes, I am uncomfortable with this role and I am uncomfortable with the role other people keep trying to put us in. Yes, and that's the best word I can give. Uncomfortable.

Gift: I still claim, Lisa, that it is interesting that you feel this way in this area because you have no problem being a peer or an expert when you hear someone snore. You don't have a medical degree, but you tell pretty much anyone you meet that they need a CPAP. And when people say wait what is a CPAP? You answer them, you tell them how it works. They tell them what to expect from a doctor. You tell them about the sleep study. You tell them why it matters. Well this is not your role. As soon as you hear someone snore, tell them that you snore. Go to a doctor. And when they say why, you should say that I feel uncomfortable in this role, I won't answer any questions. And you should assume that this answer is complete and that that person will go to a doctor to snore and get CPAP right away.

Lisa: That's an interesting analogy you gave. I would say the special thing about it is that I don't hand out CPAPs, but neither do you.

Gift: Yes, me neither. I don't distribute drugs, diagnoses, nothing.

Lisa: No, you are not, but so many of the people we come in contact with are other so-called patient experts.

Gift: Then you say that, like you said, some doctors are idiots. Yeah, you didn't say all doctors are idiots. You didn't say the medical field is filled with egomaniac who misdiagnose you. But you said that some did. And you said that there are bad therapists, there are bad doctors, that you have to be a healthcare consumer. Say that. Why do you say that all peer advocates or all lived experience experts or that all patient experts are bad because you've encountered some bad ones?

Lisa: I think what it makes for me is that I feel like it's not deviant in our, let's call it field. The other so-called patient experts we speak to usually play the wrong role. When you say, oh, some doctors are idiots. Well, yes, but they are actually different. That's not the majority of them. Most of them are fine. I don't feel like it is with patient professionals. I think it's almost the other way around, most of them are wrong. And there are few. Most of them go well beyond their field of activity. And it makes me uncomfortable. It's so common. It's so common that it's basically the norm. I almost feel like it just has to go away.

Gift: I agree with you that there are a lot of bad apples. There really is. 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 it. There are more of them than of us. When do you just leave the entire industry behind?

Gift: Never. To be honest, never. I understand what you're saying Lisa, but I don't think the answer is to drop it. Take American history, for example. At one point in our history there were more people who believed that women were not allowed to vote. But the vocal minority worked really hard to find out that this was bullshit and they were right and they changed these people's minds. That's what I feel about as a mental health advocate. Deciding who we are, where we belong, what we are good at, to let the public know what to look for.

Gift: Lisa, you and I have different opinions on this and for what it's worth I think the conversation is good but we just have to sort it out. And I have a fanboy moment here because we asked Natasha Tracy to be on the show. Now Natasha Tracy is a bipolar lawyer. She's been around longer than me and I've been with it for a decade now. She is a patient expert. She is a technical expert. She is a bipolar lawyer. She is a mental health attorney. She wrote about the lived experience. She wrote about bipolar. She has done a lot of work in the mental health field. She is an outstanding patient expert and we are very excited to have her on the show. Natasha, welcome to the Not Crazy podcast.

Natascha: Hello gift. Hi Lisa. Thanks for the invitation.

Gift: We are very excited to speak to you for a number of reasons, but the biggest reason is because I want to hear your insights into a common problem we have in the mental health advocacy and that is you and me. And Lisa, I always forget Lisa, but we want people to get information from experts.

Natascha: Yes absolutely.

Gift: Yes. And it's easy to let certain experts know because they're like doctors or licensed social workers and have letters after their names or have a governing body to watch over them. But Natasha, you and I, we are patient experts, which means that no one is watching over us. But I'd bet if I said Natasha you're not an expert, no one should listen to you, you'll come out swinging.

Natascha: I think I have two opinions on this, right? I always tell people that everything I say should be double checked, everything I say should be discussed with a doctor. Nobody should listen to me in this regard. On the other hand, I know more about bipolar disorder than most people on the planet, including doctors. I am an excellent resource when it comes to bipolar and depressive issues.

Gift: You're not kidding, your research on the subject is legendary, it's excellent, and I could probably steal it, make up a fake doctor's name, put it there, put together a bunch of testimonials, and no one would be able to figure it out Was fraud. Because if you compared it to something you read in a medical journal written by a graduate student. or an M.D., it would get up, but.

Lisa: But that has nothing to do with Natasha's own experience or illness, with her bipolarity or depression, that would be the same with any committed researcher.

Natascha: However, I think there is a really big difference.

Lisa: okay

Natascha: Between the time I research a subject and the time I write about a subject and the time a standard Ph.D. or someone like that reads and writes on a subject and that is of course experience. Right? I come from a place where I've experienced many things, if not all of the things I write about. So when I put information together, I know that it will be valuable to other people who are going through the same situation. And the thing about a doctor is that they usually can't because they can't get into a patient's brain. I honestly can't get into a doctor's brain, but I can get into other patients' heads, which is why patients find the work so valuable because it's like I'm in their head.

Gift: Because you are in your own brain you know what we want to read about because you are actually us,

Natascha: I agree.

Gift: But for every Natasha Tracy, and even for every Gabe Howard, there are a thousand people who write 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 on the same level as yours. That makes me sad and usually angry. But we'll just be sad. How do you solve that? Because to me what I'm saying is no, no, no, you shouldn't listen to them because they are patients. And then we're here because I just blew myself away.

Natascha: When people ask me what I do, I say I am a bipolar disorder subject. And yes, I live with what gives me additional insight. But that doesn't really make me an expert. That's because I researched the subject for 17 years. So if you're talking about the average patient's perspective on mental illness, they didn't get that job done. You may have lived with it for 17 years. And it's not the same. It's not the same as actually researching a disease 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 gaining a wide range of knowledge and understanding that while I have that expertise, I don't have all the answers. The people you shouldn't listen to are the people who claim you have the answer because those people are always wrong.

Lisa: How do you get that out of there? How do you let people know that you have this background, that you have this research, that you just aren't? Because they are a dozen. There are a thousand people online who suffer from bipolar disorder and know the miracle cure.

Natascha: Law. So I think there are two really important things to me, the distinction between my work and someone else's work. And so one of them is just my job. If you want to learn more about me, you can check out my blog which has over five hundred articles. You can take a look at my blog on Healthy Place which also has hundreds of articles. Between those two things, I have over a thousand articles on bipolar disorder and from that you can determine how much I actually know and understand and whether you think I am believable. That's one thing. Another thing is to actually reference my work. So, cite sources for my work. For example, when I say that approximately 11% of people with bipolar disorder die of suicide, it is not because I made the number up, and not because I read the number on a website. This is because this is the number that is actually used by medical professionals. We believe that 11 percent is currently the case. That number may change tomorrow, but we currently believe in it. And I can cite a source from which exactly this number comes. So when you read my work you see a body, yes, but you also see quotations. I encourage people to click on all of my links to see where they got this information from. Because if I get this information from a random source that wasn't really designed for accuracy, now you have your answer, right? If this is a source I refer to, how reliable am I?

Lisa: Oh that's good, I like that point.

Gift: Natasha, what do you say to your critics, 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 is a growing group of people who are understandably angry at the patient voice because there are so many untested people.

Natascha: It is completely understandable. There are many people who are spreading misinformation, and many of these people are patients. I think this is an understandable thing to feel and get upset about. However, I think that like every doctor has testimonials, some of the doctors are good and some of them are not that good, patients have testimonials and some of them are good and some of them are not that good. I believe in doctors very much, so I tell people to speak to health professionals because I believe everything should go through them. However, this does not mean that every doctor is the best. First of all, someone was the last to finish their medical education. They did.

Gift: I always say that.

Natascha: That's the only thing. But another thing is that doctors are scientists and they are trained to think scientifically. Some of them don't think so in the long run. So you have people with a psychiatric degree who are just as crazy as the people who say olive oil is a cure for something. Sie sind genauso irrational wie diese Leute. Nun, das ist nicht besonders häufig, aber es passiert auf jeden Fall. Wenn Sie also jemanden anschauen, ob er eine Person mit Buchstaben nach seinem Nachnamen ist oder nicht, müssen Sie ihn individuell beurteilen. Und ähnlich wie nicht jeder Mensch mit bipolarer Störung gleich ist, ist nicht jeder Patient gleich und nicht jede Stimme ist gleich.

Lisa: Können Sie uns vielleicht eine endgültige Antwort von Natasha Tracy geben, welche Rolle sollte Ihrer Meinung nach die geduldige Stimme spielen?

Natascha: Die Rolle der Patientenstimme ist sehr komplex, da sie vom Patienten abhängt. Die erste Rolle der Patientenstimme ist also in ihrer Beziehung zur Gesundheitsversorgung zu hören. Was natürlich auch die erste Aufgabe der medizinischen Stimme ist, nämlich zuzuhören. Dies ist der erste Job und der wirklich wichtige, den Patienten unbedingt haben müssen, was eine Stimme in ihrer eigenen Genesung und in ihrer eigenen Behandlung ist. Sie müssen gehört und angehört werden. Das sind wirklich wichtige Dinge, wenn es um die geduldige Stimme geht. Nun, zweitens, Patienten, die Anwälte sind, Menschen, die ausgehen und etwas extra tun, hat diese Patientenstimme die Fähigkeit, Dinge zu formen. Diese Patientenstimme kann die Art und Weise beeinflussen, wie Ärzte im Allgemeinen mit ihren Patienten sprechen. Ein einzelner Patient kann also eine einzelne Beziehung beeinflussen, aber jemand, der mehr Menschen beeinflusst, kann Beziehungen im Allgemeinen beeinflussen. Ich denke also, dass die Patientenstimme auf positive Weise genutzt werden kann, um die Interaktion von Unternehmen mit Patienten zu verbessern, um die Interaktion von Ärzten mit Patienten zu verbessern und um das Gesundheitssystem im Allgemeinen zu verbessern, da sie die meisten sind Erfahrung damit.

Lisa: Nun, Sie tun dies schon lange und fungieren als geduldige Stimme. Sehen Sie Veränderungen?

Natascha: Ich denke, die Dinge haben sich geändert. Patientenstimmen sind heute sicherlich mehr zu hören als vor 15 Jahren. Ein Teil meiner Erfahrung ist natürlich von meiner eigenen Erfahrung als Patient geprägt. Ich werde heute mehr gehört als jemals zuvor. Aber das liegt auch daran, dass ich heute lauter bin als je zuvor.

Natascha: Ich denke also, besonders jüngere Ärzte werden mit den Stimmen der Patienten besser vertraut und mit der Tatsache, dass wir etwas hinzufügen müssen, was wir zu unserer Behandlung sagen können. Und ich denke, dass Patientenstimmen wie meine, die andere Patienten beeinflussen, wir es so gemacht haben, dass Patienten fast verlangen, dass sie häufiger angehört werden. Die Erwartungen der Ärzte haben sich also geändert, und die Erwartungen der Patienten haben sich geändert. Und ich denke, es hat auch eine Verschiebung in den Unternehmen gegeben, die sagen, wir werden alles tun, was wir tun werden, und wir brauchen Ihren Beitrag nicht wirklich, danke. Ich denke, es hat eine Abkehr davon gegeben, dem Patienten tatsächlich zuzuhören, weil er der Verbraucher ist und weil der Verbraucher die Macht über große Unternehmen hat, zu sagen, wir werden Sie unterstützen, wir werden Sie nicht unterstützen. Unternehmen erheben heute tatsächlich mehr Patientenmeinungen als jemals zuvor.

Lisa: Es ist interessant zu hören, dass Sie das Gefühl haben, dass es eine Verbesserung gibt.

Gabe: Es gibt jedoch eine Verbesserung.

Lisa: Natürlich reicht es nicht aus, es gibt noch mehr zu tun.

Gabe: Sie sagen, es ist so, nun, es gibt noch mehr zu tun und dann wird das Haus perfekt sein, aber

Lisa: Recht,

Gabe: So ist es nicht. Wurden

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.

Gabe: Yeah.

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

Lisa: Mm-hmm.

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

Lisa: Yes.

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: Ich weiß es nicht. 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

Gabe: Yeah.

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

Lisa: Yes,

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 show@PsychCentral.com 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? Show@PsychCentral.com 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 show@psychcentral.com for details.

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