Jessica A. Gold, MD, MS

Remember to eat, sleep, and keep yourself healthy. If it helps, journal, or do something else for your mental wellness. Dr Gold reminds us that you cannot help others if you are not taken care of too. 

 Writer's Contest; and Advisory Board Member of 

Videos

While helping each other, we oftentimes forget to preserve our own health. Dr Gold recommends tips for maintaining your own peace of mind. 

To Take Care of Others, You Must Take Care of Yourself

In these uncertain times, a lot of patients are likely to exhibit exacerbated symptoms of anxiety and stress. Dr Gold walks us through some tips of how to advise. 

Tips for Anxiety in Uncertain Times

Dr Jessi Gold provides quick tips for health care professionals to practice self-care during this difficult time.

Dr Gold is Assistant Professor of Psychiatry, 

To Care for Our Patients, We Must Take Care of Ourselves

In this episode we interview Carol A. Bernstein, MD, Associate Professor of Psychiatry, Vice Chair for Education in the Department of Psychiatry, and Associate Dean for Graduate Medical Education at 

Dr Bernstein details becoming involved in the interface with psychiatry and the media, particularly through her experience with 

. She describes the history of her involvement, what it is like to take radio callers and to think on your feet, and the benefits of using her voice to help psychiatric patients and families.

She answers questions about whether psychiatrists should only speak about what they are “expert in” and whether or not psychiatrists should even interact with and speak to the media at all. Also discussed is the importance of being a voice of knowledge and reason when others who might not know as much or are exploitative could be the voices the public would hear instead.

Among other things, Dr Bernstein talks about physician wellness, the Goldwater Rule, and the conversation around suicide as important but challenging issues in interactions with the media and psychiatry. She makes the case for being a voice and collaborating with the media, even on controversial issues.

Podcasts

Psyched! podcast hosts interview Carol A. Bernstein, MD, who makes the case for psychiatrists using their voice to help psychiatric patients and families.

Psychiatry and the Media: The Radio as a Psychoeducation Tool for the Public

PSYCHED! A PSYCHIATRY PODCAST
with David Carreon, MD and Jessica A. Gold, MD, MS

In our interview with Carol Tamminga, MD, we discuss biological psychiatry and the evolution of the field of psychiatry to now include a greater understanding of the neurobiologic underpinnings of disease through brain imaging, genetics, and circuits. We talk about the "battle" between biologic and psychologic and whether this should exist.

Dr Tamminga also discusses her groundbreaking research on schizophrenia and how trying to find biological confirmation for DSM diagnoses led her to finding "clusters" or "biotypes" instead. She details how she hopes her research will inform treatment in the future, as well as measurement of treatment response. She adds information about early intervention approaches for schizophrenia treatment and the role of cannabis in schizophrenia development.

Dr Tamminga is Lou and Ellen McGinley Distinguished Chair and the McKenzie Chair in Psychiatry at the University of Texas Southwestern Medical School and the Chief of the Translational Neuroscience Division in Schizophrenia at University of Texas Southwestern Medical Center, Dallas, TX.

A dimensional approach to the psychosis spectrum between bipolar disorder and schizophrenia: the Schizo-Bipolar Scale

Identification of Distinct Psychosis Biotypes Using Brain-Based Biomarkers

Brain Structure Biomarkers in the Psychosis Biotypes: Findings From the Bipolar-Schizophrenia Network for Intermediate Phenotypes

Associations between adolescent cannabis use and brain structure in psychosis

David Carreon:            Welcome to Psyched, a podcast about psychiatry that covers everything from the foundational to the cutting edge, from the popular to the weird. Thanks for tuning in.

David Carreon:            Hey, everybody. My name is David Carreon.

Jessi Gold:                   And this Jessi Gold.

David Carreon:            And are sitting with Carol Tamminga, the Lou and Ellen McGinley Distinguished Chair and McKenzie Chair in Psychiatry at UT Southwestern. She's the chair of UT Southwestern's department of psychiatry, and Chief Translational Neuroscience Division in schizophrenia.

David Carreon:            Thank you for joining us.

Carol Tamminga:        Well thanks a lot for inviting me I appreciate being here.

David Carreon:            For those psychiatrists that are not terribly familiar with biological psychiatry, what is biological psychiatry?

Carol Tamminga:        Biological psychiatry I guess would be that group of people who are interested in the biology of the brain that underlies psychiatric conditions. This is a very, very old society that's gone up and down, and their attention on different kinds of biology over the years. And now the biologic basis, the biologic understanding of the brain and its normal function has grown so much over the last 25 years, that is a very exciting time in biological psychiatry.

David Carreon:            Yeah I think that's something that's interesting to me too about like biology 50 years ago mean molecules, and, you know, and serotonin or dopamine. Now what is for somebody who went to residency 20 years ago or 30 years ago, what is biological focusing on these days?

Carol Tamminga:        Yeah biology is such a general term, and it's like the physiology of internal medicine or something like that. I don't think we have a better word to use right now, because we don't understand what the specific biologic ... perhaps pathophysiology would be a better word. We do not understand the pathophysiologies for our diseases, but as soon as we do then we'll be able to make that term, biology, more specific. And we'll be able to say that it's self-firing or it's circuit biology or something like that.

David Carreon:            So is it that society's been around for a long time...

Carol Tamminga:        It's a fairly long society. As you might imagine 50 years ago the biology that they talked about was fairly crude, and it was a little bit more than a black box when this started, but now there's so much in that black box, it's really fabulous.

Carol Tamminga:        Brain imaging has opened up the world of biology. Human postmortem brain analysis have opened all of it up. Of course genetics and then the transcriptome analysis have opened up what we know about different regions in the brain, and their connection to function. It's an exciting time in biology.

David Carreon:            I should say so.

Jessi Gold:                  I would assume that would make it an exciting time to be a psychiatrist too.

Carol Tamminga:        It is. When I started out being a psychiatrist, and I would tell people about diseases, psycheat- what I call psychiatric diseases, I would really draw the brain in a black box, because we knew such a little bit about it.

Carol Tamminga:        Then we knew a few things about things like dopamine, and serotonin, and got to know a little bit more about the synapse, and what was the structure of the synapse, and how cells communicated with each other. And then we thought it was really all about cells, and how one cell converted with another. But these days there's a real emphasis on circuits, and how different regions of the brain are connected with each other, and how they're connected with each other not only by neuronal connections, but by the characteristics, by the dynamic characteristics of the connections. The terminology that they use these days, I'm gonna have to practice a little bit offline on the connection that they- on the language that they use, it's very interesting, very interesting.

Jessi Gold:                  I'd imagine the language for all of this changes pretty rapidly.

Carol Tamminga:        It does. Yes, yes.

Carol Tamminga:        You know, the brain is the last undiscovered organ in the body. We know a lot about the heart, we know a lot about the pancreas. They're accessible to us, the brain has never been accessible, and it's much more complicated than any other organ. So it's taken a little while for us to get the brain ... for us to understand how even a normal brain works.

Carol Tamminga:        And then we don't know the pathophysiology for any of our diseases, so we don't even how to segment psychiatric syndromes into understandable units.

David Carreon:            Now that's something that I think I'd like to talk more about, because the average person thinks about something like major depressive disorder or schizophrenia as a thing, as an entity, as some thing existing in reality, like diabetes exists in reality. What's your perspective on psychiatric nosology or how these diagnosis work?

Carol Tamminga:        So I used to think schizophrenia was an entity too, and I used to call myself a "schizophrenia scientist", I don't anymore. We did an experiment a few years ago where we took ... we decided to study the dimension of psychosis. So we took a number of different diagnosis and we did deep phenotyping on all the diagnosis. So we took people with schizophrenia, people with schizoaffective disorder, people with psychotic bipolar disorder. If we could've found enough people with psychotic depression we would've taken those too, but we didn't find enough.

Carol Tamminga:        Then we did, we had, this was a study across five sites in the United States, so we had an opportunity to recruit quite a number of people. About a thousand probands, and about 500 normal people when we did deep phenotyping project.

Carol Tamminga:        So we looked at brain based behavior very carefully, we looked at brain imaging, we looked at EEG brainwave analysis, we looked at eye tracking analysis, we looked at cognition. We looked at signs and symptoms of course. And our intent was to find some number of tests that psychiatrists could use when a patient walked in their office. A psychiatric patient walks in psychiatrist office, and a psychiatrist sits down and talks to them for an hour. You know, they walk into a neurologist office, the neurologist says, "What are your complaints?". And they'll talk to them for 10 minutes, and send them off for three tests, and then they'll come back two weeks later and they'll get a diagnosis.

Carol Tamminga:        We kind of wanted a system like that, and we hadn't started out to ... not, we started out hypothesizing that we would find biomarkers associated with diagnosis, and we didn't find one. We had about 50 or 60 different phenotypes, and we didn't find one that clearly fell in a diagnostic way on any of these different psychotic diagnosis. So we were pretty disappointed, and we spent a little time being quite depressed, because it really meant that we didn't know anything. We didn't even know how to take psychotic disorders, and cluster them.

Carol Tamminga:        So we finally got over that part of it, because we needed to get our grant renewed. So we just simply stripped the diagnosis off all the probands together into a single group of psychosis people, and we took the brain biomarkers. We took the EG, we took the cognition, we took the brain imaging, and we u- we didn't take any signs and symptoms, we took just took the brain measures, and we took them together, and we reclustered the people. And we came out with three groups of three total experiment groups. These are, we're not up to diagnosis or anything like that. These are just are experimental groups. But the experimental groups had very interesting biological characteristics, and so we decided to study them more, and now we're into a second phase.

Carol Tamminga:        These are clusters of individuals, all with psychosis, as the diagnosis are spread through all the cluster, so why bother with that? The only reason we now have to really confirm that this makes sense for selecting treatments, or biologic sense so that we would have genes that perhaps, genes or epigenetic phenomena that categorize the groups. So we're now in the process of doing that.

Jessi Gold:                  Would you say that the initial failed experiment kind of forced you to rethink kind of what you had put on the diagnosis? Like being able to kind of shake up your thinking, and to clustering things, instead of just assuming that things fell into these nice diagnosis, that DSM created. Having the failed experiment sort of forced you away from that?

Carol Tamminga:        Totally, totally. We never would've thought of it otherwise. Because we didn't start out making the hypothesis that we didn't know anything, in terms of how to cluster our patients in a group. If people have lesions, so, in Alzheimer's disease patients have plaques and tangles. It's at least a place to start, you may not know the complete path of physiology, but at least you have the lesion. Parkinson's disease, you know, if you have the VTA, the dopamine cell degeneration a lot, it's very simplistic, but at least it's a place to start. We don't have that in psychiatry for psychiatric diagnosis.

Carol Tamminga:        So I think that the way that we did it for a long time is just by pure phenomenology. That we looked at people, we looked at their symptoms, we looked at their course of illness, and we assumed that that was meaningful way to ... divide people up. But it's turned out to not be a good thing to do, it's a little bit like dropsy in 1910. Dropsy is morbid obesity- excuse me, morbid edema. And dropsy is really a group of illnesses that determined my cardiac pulmonary renal disorder. So that's how I kind of think of psychosis. So now it's really back to the drawing board.

David Carreon:            Now this is really astonishing. I mean if we think, I mean, there are some people that I've talk to who just start out skeptical. There are some people that I've talked to, that never since they were a young psychiatrist believed in DSM or the diagnostic categories, but it sounds like you're saying you were somebody who really believed at the beginning of your career that schizophrenia was a thing, and then over the course of your research you changed your mind.

Carol Tamminga:        That's it. That's it.

Carol Tamminga:        I don't know that I ever believed that schizophrenia, and schizoaffective disorder were very different from each other. That's seemed like a little wishful thinking, but I certainly understood, I always believed that schizophrenia was an illness. And now I really think that psychosis is a category like congestive heart failure, and that we'll over the course of the next, I don't know how many years find individuals.

Carol Tamminga:        The three groups we've found we've named BSNIP biotypes. They're very different from each other, and they're very interesting, and I think that if each of these three different group hadn't been so interesting, from a biologic perspective, we would never have gotten caught on them.

Carol Tamminga:        This BSNIP biotype one is a group of people that have very low cognition, they have very low brain EEG, and they have the highest gray matter reduction of the three groups.

Carol Tamminga:        The group in the middle, which we call them biotype two, was a group with only modestly low cognition. And instead of low EEG, they had high EEG. So they had, instead of hyporeactive brains, they had hyperreactive brains. Both at rest, and in evoked potential paradigmes.

Carol Tamminga:        And then biotype three was the most amazing of all the groups, because of all the biotypes that we used to measure, they were hardly abnormal at all. But their psychosis was just as bad as all the other people's psychosis. So it was ... it's a group of people who are kind of a negative control with the same clinical presentation.

Jessi Gold:                  What do you think that actually means?

Carol Tamminga:        We were wondering. And we were sitting around a table thinking, so this is all of the 5 PI's, and all of the friends and stuff. So we were thinking.

David Carreon:            Paint this picture, where was this table?

Carol Tamminga:        We get together once a year. And we get together once a week by telephone and talk about a lot of practical things. And once a year we get together and sit around in a library. It was a kind of old fashioned not very updated room, where we're sitting on chairs that are falling apart, you know. We have a lot of coffee around the table, and there's a little bit of fruit in bowls in the middle.

Carol Tamminga:        So we're talking about what clearly the people who are very, very low cognition, very low EEG people look like. What we had all probably imagined psychosis or schizophrenia was gonna look like. We were surprised in the second group by modestly low cognition, and very high, we didn't expect people to have very high EEG. It wasn't synchronous EEG , so we didn't imagine that the EEG was productive in some way. That those were people who were smarter in s- they weren't smarter, but they had high EEG anyway.

Carol Tamminga:        Then we were puzzling about what was happened to this third group, and one of the guy's all of a sudden said, "I know those are the potheads". So there was one of the five sites, it just happened to be mine, that taken a careful enough marijuana history, because one of the people at our sites is interested in marijuana. And this was in fact, the statistics aren't very strong because it was just one of the five different sites, so it was not nearly a thousand people. But in fact they were, there was a good, a very high percentage of early cannabis use. And there was a 90% of that third group had at least some adolescent cannabis use, not even early adolescent cannabis use. So now in our second iteration of going back and looking at these things we have a very careful, especially early cannabis, early psychosis screening.

Jessi Gold:                  When you look at that, and then you see all these people coming and saying like cannabis no problems, and cannabis is-

Carol Tamminga:        Oh boy I really worry. It looks to me, and most of our studies. It looks like the worst time for cannabis is somewhere between 9 and 15 years of age. And that ... still a vulnerable time for cannabis is somewhere up to 20. But if you smoke cannabis after 20 it doesn't look like much bad happens. So it's clearly a vulnerable window for cannabis. It may be a vulnerable window for other things too we don't know, but we're studying it.

David Carreon:            With this, I mean this transition from the DSM to ... I guess this is some people would categorize what you're doing, and maybe explicitly as being under the research domain criteria. Is that true?

Carol Tamminga:        Well we got started before Doctor Enzo had suggested the RDoC, so we call ourselves "pre-Doc". But I think the RDoC principles must've been emerging all at the same time. They must have been emerging at the same time as we had developed measure where we could really distinguish, brain measures where we could distinguish one person's brain activity from another.

Carol Tamminga:        We now have, we took fibroblast from at least some of these people. And we transformed them to iPS cells, and now we're growing them to matur-

David Carreon:            What's a iPS cell?

David Carreon:            What's an iPS cell?

Carol Tamminga:        It's stem cell. So we took fibroblast and transformed them to stem cells, and then we took stem cells and transformed them to neurons. So now we get a chance to see whether between biotype one, two, and three, we can find cellular fingerprint of what we're, of some kind of pathology. I mean it would be very nice to have some kind of pathophysiology for all of this.

Carol Tamminga:        Still, I don't think, I don't think at all that these three different categories, we're still in the process of figuring out how many categories there outta be, and figuring out- these are still hypothetical categories I should say it that way. We don't think that those three categories are even gonna be diagnosis, we think that each of those three categories have buried in them perhaps a hundred different diagnosis, maybe. It would just be a guess without any, based on no knowledge.

David Carreon:            And I guess, what is the average practicing psychiatrist to do with this information? I mean we see people every day who have a you know, they come in and it's a you know, 34 year old patient with schizophrenia. What does that, what am I supposed to take that as if I'm in the emergency room or if I'm in clinic? What does that mean?

Carol Tamminga:        So psychiatry doesn't have tools that are specific and selective enough to bother with the kind of data I just talked about. So what we would like to do with these data is find out what the pathophysiology is, and find out what the target for drug development is, and then find you new drugs, find psychiatrists new drugs to use in the emergency room. So that when somebody walks in, and they, the doctor can do more than say, "You have cancer". I mean if you walk in we would like to say, "You've got this kind of cancer, and these are what the cells look like, and your cells are responsive to the following medication".

Carol Tamminga:        So really it's almost premature to learn about what I'm saying, because we can't do anything about it anyways. Well we could tell teenagers never to use marijuana, but this is for sure good advice, I know that. What we would hope to do one day is to work backwards to pathophysiology, and then use pathophysiology to move forward to provide new treatments.

Jessi Gold:                  To make our treatments a little bit less like a dartboard that you just shoot at depending on side effects?

Carol Tamminga:        Exactly. Sometimes it's not, it's most of the time it's much less precise than exactly what you're talking about. In ... I work at the state of Texas, and there's clearly not enough psychiatrists there. When psychiatrists see patients they treat the serially, and one person will give them an antidepressant, one person will give them a mood stabilizer, another person will give them antipsychotic. And no doctor really takes away what other people have had before.

Carol Tamminga:        So you see these people on, in fact in this particular study where we had probands, we psychotic probands, we had a wide range of diagnosis. So people always say, "Well you must've found that people in different diagnostic categories were treated with different drugs?"

Carol Tamminga:        And the sad part about it is the answer to that question is, "No". We found almost all the patients treated with almost all of the drugs that we have. So how wrong is that?

Jessi Gold:                  Something's wrong.

Carol Tamminga:        But it's unclear how to tell somebody how to do it in a better way.

Jessi Gold:                  Do you feel like that's because we also don't know how to really measure response?

Carol Tamminga:        You're exactly right. And response comes ... not right away. I mean we work with symptoms ... where it may take a while for the drug you have the person to work, but you don't know how long it's going to take, and you don't how long to wait. Most people wait maybe two weeks or something, before making a change.

Carol Tamminga:        The kind of symptoms that psychiatrists look at are, that first of all, are poorly treated and generally treated by the drugs that we have. So that's clears. And then they ... we don't know what the relationship is between the background of the illness with the drugs that we use. We're pretty lucky to have the drugs that we use. We could have nothing, because we don't know pathophysiology. I'm not gonna say we don't know anything, but we don't know pathophysiology.

Carol Tamminga:        The drugs that we have were just accidentally discovered, and then very well exploited from their discovery, but we need to know a lot more to get more precise drugs.

David Carreon:            And I think, I'm interested also, I think there is almost this feeling in psychiatry sometimes that it's a battle between the biological psychiatrists, and the people who care something about psychology. And that these, you know, people are dismissing each other, there's these two camps and battle lines are drawn. But would you say your perspective on this ... ought there be a battle?

Carol Tamminga:        No, no, no. Not a battle at all. In fact all behavior is based on brain behavior, so even psychological phenomenon, even though we look at them as psychological phenomemon are totally based in brain behavior. And I'm not psychologically oriented as a psychiatrist, but I would think that there's a huge area of looking at the relationship between brain changes and psychoanalysis that could really be looked at. Because psychoanalysis can't be anything other than changes in brain regional plasticity. And they would be very, very easy to study. Every time I interact with my psychoanalyst colleagues I try to talk them into doing brain imaging, and other kinds of tests.

Jessi Gold:                  When you were in training, did you know that you weren't like psychotherapeutic minded, and you wanted to be more focused on biology, like the whole time?

Carol Tamminga:        I did. I'm sorry to say. I studied Freud when I was a resident, I think all residents really do. And I asked biologically oriented questions of Freud to my teacher, and I quickly learned that that was not the proper student attitude. This was a long time ago. So I stopped asking questions. But I, you know, I, even Freud himself said all of these big behaviors are gonna be explained by brain activity in the future. So Freud himself when he was was explaining in using psychological phenomenon to explain to his students, he was very biologically oriented himself.

Jessi Gold:                  And I know that, maybe, even if you're not so much like a therapeutically minded you are really early intervention minded, when it comes to early psychosis.

Jessi Gold:                  What does that look like? Can you explain that a little bit more?

Carol Tamminga:        Well this is another kind of phenomenon that I've only come to realize recently. You know when you talk about cancer care, early detection is what it's all about. You don't let the cancer develop and loo at where the metastasis go, and how fast they grow, before you decide treat it. That's what we do in our field. Somebody gets a little bit psychotic, and you wait for it to develop a little further. You see if the psychosis is paired with affect changes. Whether the affect changes started before or after. Then you let it go a little bit more, and see what their social function is. If their social function deteriorates fast, deteriorates slowly.

Carol Tamminga:        And finally we do most of our testing for new drugs, and a lot of our research, we do in people who are 30 to 40 years old, and have had their illness for 15 years. And I think that the realization that we really need to get to all of this very early, and we need to get to people who are psychotic early to stop their psychosis, and particularly stop the psychosocial deterioration early. And then they'll stay better for longer. We're still in the process of testing whether they really stay better for long, and we'll have tweak our treatments so that they help the people stay better for longer. But I have no doubt that we're on the right track.

David Carreon:            You know, and that's something that also I, at some point in my career that I've heard lectures about schizophrenia that are rather fatalistic. It's this, you know, it's a biological illness, which has a 1% chance, and it just if you happen to have the unlucky gene at birth then you're just kind of up a creek, and so no point in early detection because it is what it is, and there's no turning, you know, changing it.

David Carreon:            Is that a true view of schizophrenia?

Carol Tamminga:        So I think that's wrong. I don't think that there would be a lot of psychiatrists who would be so ... fatalistic, would see it as such a single path forward. I don't think that we can take every person with a diagnosis of psychosis or schizophrenia and turn their illness around and cure them. We can't take everybody with cancer and cure them. We can't take everybody with heart disease, and give them, even do a transplant and get them cured. But we can do our best in tryin to predict which people to do the complex early treatments with.

David Carreon:            And what is that, for those who may never have heard of the early intervention, what does that involved? And I guess how, just very superficially or overview wise, how could that change somebody's course? Somebody on track to another or would get what we call schizophrenia? How would that change

Carol Tamminga:        So a lot of people, these studies started in Europe and most European countries. Probably in the 1990s, and there were several studies that studied at them, giving intensive interpersonal psychosocial, and constant antipsychotic treatment to people with early schizophrenia. These studies happened in Europe.

Carol Tamminga:        There were a couple of scientists in the U.S., Lisa Dickson being one of them, who kept and eye on those studies, and who was very interested in early treatment. And she was very interested in treating early everything that was, all of the psychological and medical burdens of people with early psychosis. So she paid attention to drug abuse in early schizophrenia. She paid attention to not only just the psychosis, but of course she treated the psychosis too, but she cared about families, and family patient interactions, and things like that.

Carol Tamminga:        She's the one that was the inspiration RAISE Study which then got completed around the country. Which was a two year early intervention study. Where people who with psychosis got, they were watched very carefully over two years. They had ... very intensive treatments, both psychological treatments, and the pharmacologic treatments, and family treatments, and CBT, and cognitive remediation for two years. And at the end of the two years, the people were better

Carol Tamminga:        Why they're better is unclear. It could be, it has to be that they watched very carefully by a group of people who were treating them, and therefore they stayed on their medication more. That must be a possibility. And another possibility there's just nothing that's worse for psychosis than drug abuse. So that drug abuse was given some attention, and people were treated for their drug abuse. Whether or not the cognitive remediation turned things around cognitively in the brain is a big question.

David Carreon:            Okay well we are coming to the end of our time. I wanna as-

Carol Tamminga:        Well it's been nice talking with you guys.

Jessi Gold:                  You too. Thank you for making time.

Presenters of Psyched! podcast talk about biological psychiatry, schizophrenia, and biotypes with a researcher who has presented groundbreaking work in the field.

The Last Undiscovered Organ in the Body


with David Carreon, MD and Jessica A. Gold, MD, MS

In this episode, we talk to Mark Lukach, author of the book 

My Lovely Wife in the Psych Ward: A Memoir

, about his experiences as the loved one of someone with new onset symptoms of mania, depression, suicidality, and psychosis. Mark tells us the story of his wife Giulia and how their future changed unexpectedly when they were 27 years old and she was first hospitalized on a psych ward.

 and then his book (no other books on caregiving in a romantic relationship! and feelings of loneliness), the response from others (including parents at his school!), and the role of writing in his marriage. He also shares it has been like in his relationship as a caregiver.

Mark details how he redefined what love is and the role of love in illness and pain, as well as learning to plan for a crisis in between crises. He also beautifully explains what’s it’s been like to be the caregiver and have his feelings and experience unacknowledged by so many-from her professionals to the mental health insurance system. He imagines what an ideal mental health system for caregivers might then look like-including redesigning the waiting room-and how maybe it could all be fixed with one word: inclusivity. Mark's website is 

Welcome to Psyched. A podcast about psychiatry that covers everything from the foundational to the cutting edge, from the popular to the weird. Thanks for tuning in.

David Carreon: And this is Psyched. Today we have Mark Lukach, a teacher and freelance writer. His work has been published in the 

, and other publications. He's currently the 9th grade Dean at the Athenian school where he also teaches history. He lives with his wife, Giulia, and their sons in the San Francisco Bay area. Mark first wrote about Giulia in a 

Modern Love column, and again in a piece for 

, which was the magazine's most read article in 2015.

David Carreon: Mark, thank you for joining us.

Mark Lukach: Sure thing, thanks so much for having me on. I really appreciate it.

David Carreon: Mark, tell us about this piece that you wrote about. What's the story behind it?

Mark Lukach: I actually don't initially identify as a writer. I really am a high school teacher, right? I met my wife Giulia when we were actually in our first week of college. It was very much puppy dog love at first sight, like chasing rainbows into the sunset kind of thing, you know? It just felt like a fairytale in many ways. We ended up getting married, pretty much directly out of college, and moved to California soon after that. I thought the future was set. I had this amazing woman who I was in love with, who I was married to, we were gonna have a family. I was doing my dream career of teaching high school history.

Then when we were 27, Giulia ended up having a psychotic episode. This was totally out of no where for us. It's onset was really disorienting and pretty terrifying, because we had no sense of what mental illness looked like. Giulia was definitely always really ambitious and had some perfectionist tendencies and could be hard on herself, but in no way would that, to me indicate ... I didn't expect or have any reason to expect that she was gonna end up having delusions and be fully paranoid and have to get hospitalized.

How it all went down was that, she ended up starting a new job and for whatever reason the combination of the work stress and the self imposed expectations, she kind of got paralyzed with anxiety at work and had a hard time doing even fairly menial tasks. Day to day emails, she would overthink everything, she'd forward them to me to proofread these two sentence emails and say, "I've been working on this for two hours, because I want to make sure it was just right." That was nothing like the Giulia that I had known before who was always so effective and efficient at work.

It started looking like that, and then it grew where she ended up experiencing ... she was having a hard time falling asleep. She lost her appetite, and then eventually she ended up not sleeping at all. I'm like, "What's going on. What's happening to you?" I actually had a friend who was getting a PhD in Psychiatry, and I checked in with him and he's like, "You know what, she's probably just adjusting to this new world, this new job." It was her most important job that she'd had.

So, we were kind of like, it's just situational, she's hopefully gonna settle in and adjust. I thought that was really good advice, but I had a hard time accepting that Giulia couldn't just figure it out. I was like, "Giulia, you're tired. You've been working hard, just go to sleep. I don't get it. Why can't you fall asleep if you're tired. And if you feel so upset, why can't you just relax and take it easy." I was really naive and unfortunately pretty unhelpful in that way too. I just thought, well when you're having a tough time, you take care of yourself, you get a good nights sleep, you step away from the stress, and then everything's gonna be okay.

It wasn't for her. She got rapidly worse. In the stop sleeping phase she ended up experiencing delusions. That's when I ended up taking her to the emergency room where they admitted her and said she was psychotic. I literally didn't even know what that word meant. I thought they meant she was like a psycho killer, or something, and so that she was dangerous. I didn't think she was actually dangerous to anybody, I just thought, this woman's really tired and really stressed out and needs to just rest.

My expectations of what was going to happen in the hospital were also very unrealistic. I thought that they would just give her the right pill or two and 48 hours later she'd be home and she'd be back at work within a few days. Just kinda back to herself. Instead, they experimented with a lot of different medications, she ended up being in the hospital for 23 days. I took that time off work. I actually took the semester off of teaching so that I could be there to support her through this.

She came home and was admitted to an outpatient program where at admission they said, "Our average time in here is like 4 to 6 weeks." And Giulia ended up being in that program for 9 months, just because they continued to struggle to find the right medication that could support her. I was thrust into the world of caregiving.

Your question was about writing. This is a really long answer to get to that because, when Giulia was hospitalized ... I'm a historian right? So I go and I research to find answers. I learned a lot about mental illness by reading books, researching the internet, et cetera.

I was really shocked to find that there was almost nothing out there about caregiving around mental illness, especially in the context of a romantic relationship. I did find some stuff about parents trying to support their children, which I think is really useful and mostly relevant, but I also think there's a really big different between a relationship between a parent and a child and a relationship between two partners who are trying to be equals. And who share a bank account and stuff like that.

I felt, of the many feelings that I had throughout this, just abject sadness and fear. All of it was compounded by the sense of loneliness. Even though I wasn't the only person in the world going through this, I sure felt like it, because I couldn't find anybody out there who was talking about it. I won't say that was my initial motivation to write about Giulia's mental health and my caregiving of it, but when she ended up getting out of that outpatient program, we had the idea that maybe our story could help people. That Giulia, if she was willing to share her experience, and if I was willing to share my experience as a caregiver, we could connect with people who also felt that sense of loneliness.

The first piece that I wrote was for the 

Modern Love column. It got published and it got a lot of attention, there's no question about it. I ended up getting a lot of emails because I think it struck a nerve with people who are like, I'm in a really similar situation, and I haven't found people who are writing about this.

Then, a few years later, I ended up working on a magazine piece that detailed not only Giulia's first episode, but also her second episode and how it was connected to the fact that we had become parents in the middle of it. That was called "

. I hate using this phrase, but for lack of a better term, that piece went viral. It had a few million reads within the first week of it. For a few weeks I was getting over 100 emails a day, and almost every single one of them said thank you for writing this, now here's my story. It was amazing to see how many other people felt that loneliness that I have felt.

That magazine article lead to me having the opportunity to turn it into a full book. The book's been out for about a year now. It's actually coming out in paperback in early May. It's had, what has been for me, a pretty similar effect, where it's just presented me with these amazing opportunities for me to speak to people who are also in a family dynamic that's impacted by mental illness. Whether it's someone who they themselves have been diagnosed, and I've gotten feed back that it's just given them a little bit of a sense of perspective on what their family members might go through. Or, the caregivers.

I'm so humbled that people have taken the time to read this, because the fact that its making people feel a little less alone is just such an amazing sense of like, yes, that's exactly what I wanted to do this for. Because, the tragedy of mental illness is that we are people who are scared to talk about it. Even though we are suffering and struggling, we add that extra layer of difficulty, because we think it's something that's too scary to share with your friends or share with others. As a result, you lose perspective on how many people are going through this. And how, if you actually do open up and talk about it, you can support each other, you can swap resources, you can share strategies, et cetera, et cetera.

Where we are today in 2018, Giulia has been hospitalized a total of 3 times. That first one was back in 2009, her second one was in 2012, and then the third was in 2014. They've all happened in the fall. They've all followed a very similar trajectory of starting with psychosis and then being followed by a very lengthy suicidal depression. Her official diagnosis is Bipolar 1. To support that, she's on Lithium, which has turned out to be really great for her. It feels like it helps to manage the illness without creating unwanted side effects.

We're cautiously optimistic that we have found a way to manage this in our lives. And to still get to be the type of individuals and family that we had always dreamed about. Giulia is back to thriving in her career, and that hasn't been an issue. I'm still a high school teacher. Our first born is almost 6 years old. And seven weeks ago, Giulia gave birth to our second child.

Mark Lukach: Things are going really wonderful there. He's an awesome little guy, and Giulia loves being a mom. I never want to think, "Oh, this is behind us." Because, I know that Bipolar is a lifelong condition. There's always reason to have to be cautious. I do feel really hopeful that through these really difficult years we've learned how to care for ourselves and each other, so that her Bipolar does not have to be something that ruins our family. We fell like regardless of how many future hospitalizations there may be, we think that we can make it as a family. Again, you literally asked one question and I just took off and ran with it. I hope that's okay. That's the context of our family's story and the writing I've done about it.

David Carreon: Mark, thank you so much for telling us that story. It's such a powerful story, and one of the things that just strikes me about how you tell it, is you started the story with the puppy dog rainbows into the sunset love and that's apparent and palpable in the way you tell the story, that you are in love with your wife.

Mark Lukach: Yeah. I am. I don't know what else to say other than yes, I agree with you.

David Carreon: I love that. It's often hard for people, as we see people who have mental illnesses, it's often hard for them to ... for people outside of the field to realize that there are real lives and real stories, and people can get back to thriving. That doesn't always happen, but that happens.

David Carreon: It's such a good balance between yeah things are hard, but that doesn't change the fact that she's a person who you're in love with, who can be back to thriving despite some very serious challenges.

Mark Lukach: Yeah. Through her diagnosis I had to redefine what love is, and what caring for someone you love looks like because my original thought was when someone you love is in pain, you wrap them up in a bear hug and you become their cocoon against the harshness that is hurting them. I also thought that it meant problem solving. I thought, hey you're sad, so I'm gonna help you feel better. Hey you're feeling suicidal at this moment, I'm gonna change the topic so that you don't have to think about that and you can think about something else.

I had to learn in response to both of those views is, for the first one I really had to learn the limitations of myself. I saw a therapist though out this and she used to always say, the good news and the bad news is that you're just not that powerful. I had this expectation that as her husband I was going to fix her, which is ridiculous, but I still felt it. I had to let that go and trust the process a little bit more, still be fully informed and researched and in communication with the doctors as much as I could, but also understand that the human brain is way more complicated than something that just a bear hug can fix.

I think the other thing that I really had to learn was that when people are in pain they're not necessarily looking for a problem solver. If I'm having a crappy day, and I want to talk with someone about it, it's not necessarily helpful for them to be like, well let's come up with a five point plan for how to make your day go better. A lot of times what people are actually just looking for is someone who's gonna sit back and listen to them, and not judge them, but just let them feel that way. And that the mere acknowledgement of your pain can help to heal that pain.

It's so interesting because I, myself, come from a family of doers. We're hands on lets get there and fix it. The act of listening looks like a very passive activity, because you're literally just sitting there, but I've realized that it's not only really difficult to do, but it's one of the most helpful things you can do, is to shut up, not try to solve things, but just to be there and to listen, became one of the most important things that I could provide to Giulia. If she was fearful about a relapse, that I shouldn't get in there and try to talk her out of that fear, but just to let it be. And if she was feeling suicidal in a moment, as long as I was with her, and I knew she was physically safe, those feelings couldn't ... they were sad, they were hard to hear, but that didn't mean I needed to deny their existence. Instead, I needed to do the exact opposite.

I really do think that what our love looked like when we met and got married, has changed a lot over the last 10 years as it's been reshaped by this, her mental health diagnosis.

Jessi Gold: I'm struck by a lot of what you've said. One thing I was thinking was you mentioned that a lot of people write about this, the parents writing about children, and often times when people get sick they take on the parental role for the person that they love. It sounds like you tried to not do that, as much as possible because you still-

Mark Lukach: I think I very much did in the beginning. I think it was instinctive. On the one hand I get where I was coming from. If Giulia was left to her own devices, she would have stayed in bed all day, or she would have done something much worse, like drive to the Golden Gate bridge and jump off because she talked about that all the time. I know that's something she wanted to do.

There had to be a part of this where I was controlling and dictating how she spent her time, in the way that a parent does a child. I had to learn the balance of saying, yes, I'm here to keep you safe but that doesn't mean I'm going to try to run your life. I didn't do that well at all in the first episode. The first episode I very much ran the show.

After the first episode, when Giulia was healthy and balanced and stable in between, she was really mad at me, and I couldn't understand why. I was like, I just basically gave up my life for almost a year to take care of you, and you're mad at me? How does that work? It was because she felt like her voice was not listened to during that care. If her doctor said something, and Giulia said something I was going to instinctively listen to her doctor. I would write off Giulia's perspective as well she's sick, right? She doesn't get it, the [inaudible 00:20:05] is worth it because the medicine are helping stabilize the psychosis, so you'll be fine Giulia, don't worry about it.

Instead, I had to really see and experience her resentment about how I had treated her to snap out of it and realize, I'm not helping by treating her like a child. I'm not supporting her by parenting her. I actually need to let her have a voice in this whole thing. It's hard to let someone have a voice when they think if you come near me you might get infected by the same devil that has infected me.

This was really what that magazine article I wrote was really about, was that we needed to basically work in between the crisis to plan for the crisis. If we faced a crisis, I would be able to advocate for Giulia's point of view because she had already shared it with me. As compared to not talking about the crisis, getting into it, and then I just have to act on instinct and hope that I'm acting in Giulia's best interest, but not actually know that for certain.

It took a lot of failure to get to that point. I tried to be honest about that in my book because I'm not saying that to judge myself and beat myself up, but because that's just the process it kind of has to go through. You kind of have to learn by doing, what it is to support each other, because you don't know what that support needs to be until you actually face it.

David Carreon: The way you approach your story and looking at your own part in how things could be better, I think this is partly what you were talking about before in what we've experienced a lot too in terms of the stigma. "Oh, well they're just crazy." We are the ones whether it be Psychiatrist, or the institutions or society, we know best the people who have mental illness, they don't need a voice because we're going to be their paternalistic doctors or-

David Carreon: We're gonna be the ones who get to say what happens. I really appreciate your reflections on why can't you just approach to people who are suffering it isn't necessarily helpful but at the same time, the other side of it which is well, nobody talks about this so how could anybody know what the right way to approach somebody with a mental illness is?

Mark Lukach: Exactly. You have to stumble your way through it because there isn't a roadmap out there. I wrote a memoir, I didn't write a how-to book, but my hope is that people can learn from the mistakes that I acknowledged that I made in order to, hopefully, modify how they might approach this if it faces their family.

Jessi Gold: Yeah, and you mentioned when you wrote your story that all these people started writing in saying thank you so much for telling your story, here's my story. What do you think stopped other people from doing it? And then what was it really like for you to have made the choice to become a voice for that.

Mark Lukach: I get it. We as a society are not very respectful towards mental health. I distinctly remember being, when Giulia was in the hospital the first time, and she was experiencing auditory hallucinations, hearing voices I on the radio heard a commercial where it was like a bunch of celebrities saying how crazy the prices were on a new car. And the person was like no, what's crazy is hearing celebrities tell you to buy this car. It's like the entire premise of the ad was to make fun of auditory hallucinations, right? Here was my wife at that moment in the hospital experiencing those and there was a marketing scheme built around what she was going through and suffering through.

I totally get why people want to keep this to themselves. And I also understand people are private. I, of course have things that I want to be private about, but I'm just generally more okay with sharing. I don't think this means that the best solution for everyone is to go around and broadcasting your story to everybody, but I do think that if you feel like you trust people then you can let them in and they might be able to help in a way that you wouldn't expect if you're too afraid to let them in, you know?

The reason Giulia and I wanted to go more public is because at the core I trusted that I was telling this story in a way that respected Giulia's dignity and that was protective and nurturing of our marriage, that I wasn't at this to vent about the way things have been, even though there's certainly moments where I'm frustrated.

Even though, most people who read this book I don't know them personally, I'm still secure enough in how it's written that I trust how they're gonna read it. I don't think they're gonna go there and be like, wow this dude's exploiting his wife's illness just to write a book. I know that's not what I was doing.  I'm pretty comfortable that that's not how it comes across.

Just being out there has been interesting, because I'm a teacher, my kids all know this book is out there. Many of them have read it, many of their parents have read it. I think I operate in my school a little differently as a result. I have certainly had families have shared with me things that they probably wouldn't have otherwise, because they see a little bit of a kindred spirit now. It's funny, let's say I'm a party, and they're like, "Oh what do you do?" I'll say I'm a teacher. But if I say I'm a writer they will ask well what have you written? And that's gonna lead to a much longer conversation that I'm not necessarily always up for in a social party.

It's really funny, Giulia and I have this thing there's some people where it's like yeah you've read our book no big deal, but there're other friends we're getting to know, we feel like we have to share this at the right moment because you want to make sure you actually have the time to get into this whole background, and it's not necessarily something you always do with casual acquaintances if that makes any sense.

David Carreon: Absolutely. I think I've had that experience, "Well what do you do?" "Well I'm a Psychiatrist." And sometimes they'd say, "Oh well I have a question for you." It's like "Oh no, this is an Uber. I just wanna go to the airport."

David Carreon: I'm curious about how telling your story ... so there're changes in how you, professionally as a teacher, how does this change? How does it change, if at all, your relationship with your wife?

Mark Lukach: I think that the book was, the writing which took many years, was something that may have in fact helped save our marriage. Because, it became the way that we could communicate about this. I said earlier after the first episode Giulia was really mad at me for how it had felt to her. I was really wounded by that because I felt that my experience was really invalidated. In those two feelings we had a really hard time communicating about what we had gone through. We couldn't sit there and talk about it face to face.

I came up with idea, well what if I write to Giulia about it, because then I can make sure that what I'm saying has been edited and is presented in a way that is more thoughtful than what I might just say in a conversation. Then Giulia could read it in her space, and that could be the invitation to have the difficult conversation because a lot of it's already out there.

The writing for me and the reading for Giulia was a conduit to a lot of healing for the two of us. Then what I would say further is that it's also become an anchor of the standard we want to have for our marriage. Which, obviously is not always lived up to. Marriage is certainly not perfect, and there's a lot of frustrating moments. I think there's a lot of idealism in this book about what a marriage is and how two people in a partnership can and should treat each other.

A lot of times when we're not being great to each other, one of the things that might check us is like, hey lets not forget what we agreed we wanted in this book about how we want to treat each other. Let's try to return to that way of being and not this less kind way that we're being right now.

It was kind of like a declaration of this is what we want our marriage to be like, unconditionally supporting, listening, hearing the hard things, and not getting mad at each other for them. Of course, we don't always do that in practice, but at least we can remember that we have done that before. We want to aspire to that in the future as much as we can.

Jessi Gold: Were there times when you were writing this story where you remembered something and she was like, "That didn't happen." Or "I never said that." Or a time where you remembered something and she was embarrassed that that had happened?

Mark Lukach: Oh yeah, definitely. Giulia had the first veto power for what ended up in the book, and the process was always kind of funny. I'd work on a section and I'd send it over to her, and she might not read it for a few days, so I'd be working on a different section. I would just hear her like, "What? You want to put this?" So then we would have to talk it out.

Yeah, we definitely remember differently, but that's okay. I think Giulia got to understand that this book is from my perspective, I think that's what makes it different, and I think that's why it's resonated with readers because it is from the caregiving experience. There's a lot of stuff that Giulia remembers from being in the hospital that's not in there because I wasn't there, and those aren't my memories.

There's a lot of ways that I interpreted situations that Giulia may have interpreted differently but she gets it, like really at the core, while this is about us and this is about our marriage and it's about her illness, it's through my lens. That is the lens that is so, I believe, underserved.

It was good, and even just that process of editing it, like I said, it forced us to have these difficult conversations. I think it forced us to confront something that is so painful, and your natural instinct is you just want to move on from difficult times and bury them in the backyard and not have to deal with them. But we kept forcing ourselves to reexamine them over and over again, and I think that puts us in a place where, now, we both feel like we've really accepted what we've gone through, and don't continue to feel the pain of it anymore.

David Carreon: I really like that way of putting it, that it was not feeling the pain of it anymore that you've come to some conclusion or some resolution.

Mark Lukach: It does kind of feel like that. Yeah, the book does feel like a conclusion in a way, even though we know that the journey still has a long way to go, at least the trauma of mental illness feels like, it's not traumatizing anymore.

David Carreon: As you describe this, I imagine some of these lessons might be more broadly applicable to, two people in a relationship have different perspectives on a particular event or having to come to terms with strong feelings or challenges. Have you gotten any feedback from people who read your book who might not be in the caregiving role or people who might find, well this was accepted as a 

Mark Lukach: Yeah, no for sure, I actually do think although this book is about mental illness, it's primarily a love story about a relationship. What I'd say is that I've had readers who have reached out to me saying this speaks to my experience so much. Then I have others who just like at a book event they might be like, well I haven't experienced mental illness, but, I'm in love and I'm in a relationship. So it still felt like it was really relevant to them.

That is also really ... to something as you know, this piece of work that I put out there, the fact that people are reading it, whether they've confronted mental illness or not. It's interesting because the title makes it very clear what this book is about, right? "My Lovely Wife in the Psych Ward." You know you're gonna be reading a book about mental health.

At first Giulia and I wished that maybe the book title could be more subtle, and maybe not so avert about setting the parameters of what the topic was gonna be. But now, both of us really understand the value of the title, which my publisher was pushing very hard, because it's an invitation to see mental illness in a different way, but also to see how universal the experiences of caregiving and being in love are regardless of what the circumstances are.

Jessi Gold: You've also mentioned that being in a caregiver role in a hospital can be complex, and sometimes non-acknowledged. Can you talk a little bit more about that, and what your experience was when she was sick and in the hospital and you ... even maybe in the later times where you knew a lot more about what was going on and had more opinions and had her opinions too.

Mark Lukach: Yeah. That's a great question because, unfortunately the day of admission, I felt just so ignored. Like we showed up and they're all focused on Giulia, which I get, but they basically were like go away, to me. Like we got this, we're gonna handle this, just come back during visiting hours. Without really orientation to me of where we were or what was happening, any of that stuff. I found that to be really frustrating.

I did appreciate that there was a social worker who was dedicated to Giulia's case and I was allowed to communicate with the social worker, that was helpful. She helped me make sense of it, but honestly, I just had to go see a therapist in order to, not only help me process, but even just understand the logistics of what was going on.

I called my insurance company and said, "Hey, my wife's been hospitalized with a psychotic episode, I'm basically going through an existential crisis and I would love to speak to a therapist through this." And their answer was, "Sorry, you don't have any diagnosis, so the most we can give you is 30 minutes of therapy a month." Which to me was infuriating. I ended up just paying out of pocket, because caregiving itself is not acknowledged as a burden, as a medical or psychiatric burden, even though it obviously is right? Caregivers have sacrificed their own health to take care of someone else and then end up having their own health issues, whether they're physical or emotional.

Giulia's been hospitalized three times and it was not until the third hospitalization that I had one of her doctors ask me how I was doing. I think that was really ... when it happened I realized how desperate I had been for one of her professionals to treat me as if this was also difficult for me, and that maybe I needed to be acknowledged in that front, you know? It's really hard.

Also, I say this, and I don't want to blame the doctors who Giulia has come across, because I absolutely know that they were clearly professional, doing the best they could in the circumstances they were in, which is often way too many patients, not enough time to get to know your patients. How do you even possibly have the time to get to know the patient's family and to be able to support the patient's family at the same time?

If I had one wish it was that, we just create more time and space for the professionals, the nurses and the doctors, to not just have to treat their patients as individuals but to be able to treat their patients as interconnected family members and friends and professionals and all those other things, so that they could be inclusive in how they were able to treat their patients. Of the perspectives of those who care for them and worry about them and want to help out.

David Carreon: I couldn't agree with you more. I think this is such an important and overlooked, I'm probably guilty of this myself as, when I was on the in patient board, it is difficult, but on the other hand, Psychiatry as a system needs to take seriously the fact that we're not doing most of the work. It's family members and parents and siblings and neighbors and the other people in somebody's life that are doing the heavy lifting of the day to day stuff. They'll see us once things settle down maybe once a month or once every few months.

David Carreon: There's every day between those things. I am glad you're telling your story; this really is an underappreciated, and frankly underdeveloped part of the mental healthcare system. How do we better partner with the families and friends and romantic partners?

In this podcast, author Mark Lukach shares his experiences as the loved one of someone with new onset symptoms of mania, depression, suicidality, and psychosis.

Jessica A. Gold, MD, MS

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