Amid rising understanding and support for mental health disorders, some — like bipolar disorder — remain heavily shrouded in stigma. Author and neuroscientist Lisa Genova’s new book, “More or Less Maddy,” tackles this subject with accuracy and compassion. We talk to Lisa and Mayo Clinic licensed clinical psychologist Dr. Lorelei Rowe about how bipolar can affect those with the disorder and their loved ones. TW: self-harm, suicidal thoughts.
Amid rising understanding and support for mental health disorders, some — like bipolar disorder — remain heavily shrouded in stigma. Author and neuroscientist Lisa Genova’s new book, “More or Less Maddy,” tackles this subject with accuracy and compassion. We talk to Lisa and Mayo Clinic licensed clinical psychologist Dr. Lorelei Rowe about how bipolar can affect those with the disorder and their loved ones. TW: self-harm, suicidal thoughts.
This episode was made possible with the generous support of Ken Stevens.
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Dr. Denise Millstine:Welcome to the “Read. Talk. Grow.” podcast, where we explore health topics through books. Our topic today is bipolar disorder; a complicated mental health condition that affects 3% to 4% of Americans and can be quite severe. Our book today is the new book by Lisa Genova, “More or Less Maddy.”
I'm your host, Dr. Denise Millstine. I'm an assistant professor of medicine at Mayo Clinic, where I practice women's health, internal medicine and integrative medicine. I am so excited about my guests today. Dr. Lisa Genova is the New York Times-bestselling author of several novels and the nonfiction “Remember: The Science of Memory and the Art of Forgetting.” Lisa has degrees in neuroscience from Harvard and biopsychology from Bates College. Her TED talks on Alzheimer's disease and memory have been viewed over 11 million times. Lisa is a true phenomenon in popular culture and brain health. Lisa, welcome to the show.
Lisa Genova: Denise, thank you so much for having me.
Dr. Denise Millstine: Dr. Lorelei Rowe is a licensed clinical psychologist and director of the Adult Transitions Program at Mayo Clinic in Rochester, Minnesota. Her clinical practice focuses on recovery from acute mental health crises, as well as treatment of chronic mental health conditions. Lorelei, welcome to the show.
Dr. Lorelei Rowe: Thank you. I'm so happy to be here.
Dr. Denise Millstine:“More or Less Maddy” is contemporary fiction featuring a very typical young woman, Maddy, who's started college navigating the ups and downs of life changes, relationships, life in New York City, only to find herself overwhelmed, devastatingly depressed, and then swinging into a terrifying, dangerous mania. The novel follows Maddy's diagnosis of bipolar disorder and then her treatment, which is a balancing act with compassion and empathy.
Okay, you both know how “Read. Talk. Grow.” works. We discuss books that portray health topics in an effort for people to better understand health experiences through story. In this case, we'll talk about the common but often misunderstood condition, bipolar disorder.
I do want listeners to be aware that there are several triggers in this book, which does include self-harm and also suicidal thoughts. Please, listeners, proceed with caution and take care of yourselves.
Lisa, you've written about brain health, including dementia, brain injury, Huntington's, ALS. What inspired you to tackle bipolar disorder next?
Lisa Genova: Yeah, so I am interested in writing stories about anyone living with any kind of issue that affects their ability to relate to others in themselves. It's going on from the neck up. So anyone who tends to be ignored, feared or misunderstood because of what is going on inside their brains. And so I hadn't tackled anything that is classified as mental illness yet, and that seemed the obvious place that I really needed to go.
And when considering what to write about, whether it would be depression or schizophrenia or an anxiety disorder, PTSD, bipolar disorder. Bipolar disorder really felt like it was hiding in plain sight everywhere, that there's an exceptional amount of taboo and stigma attached to it. And it's so prevalent, as you mentioned in the introduction. And so I thought that this book could become a vehicle for a much-needed open conversation about all these people who are struggling to thrive and live with bipolar disorder.
Dr. Denise Millstine: And we're so glad you did. We do hope that future novels are going to feature those other topics that you mentioned as well. Lorelei, tell us your reaction to the book and what it's like to be a clinical psychologist with your focus?
Dr. Lorelei Rowe: I think what thing that really struck me as I was reading this was how just how spot on it was, which is, of course, what we expect to be, given the author. But the descriptions of Maddy's experience were so similar to the things I've heard from patients, from what I've observed, and the part that, I mean there were many parts that really struck me, but in particular, when she's in the hospital and the doctor is talking with her about the different options, and she's sitting there thinking that she has to go along with this, that she doesn't really have a choice and isn't seeing how these things that we say that we have that are intended to be supportive and hopeful are just falling totally flat with her. And that was really valuable to me in thinking about what it's like for our patients, because you could see the patient coming through right there and what that would be like to be in that position.
There are so many things I can say about this book. I will not give them all right now, but I thought it was really written, as you said, with a lot of compassion and empathy for not only Maddy, but also for her family. Yeah. So that was, I think, just lovely. In terms of my work, so I've been a clinical psychologist for 20 some years now, and I've worked with a lot of different populations, including bipolar disorder.
Currently, I work in a transitions program, which is an intensive outpatient psychotherapy program for people who are coping with a mental health crisis or trying to prevent one. So we see a lot of people who have bipolar disorder within that program. So Maddy would fit right in actually.
Dr. Denise Millstine: Maybe our listeners aren't familiar with what an intensive outpatient program would be. I think maybe classically we think of inpatient psychiatric treatment, but would you just give a nutshell of what that looks like as an option for people in crisis?
Dr. Lorelei Rowe: Yeah, absolutely. So an intensive outpatient program is, or an IOP, sometimes they're called, you’ll hear about partial hospitalization programs are day programs. So the person is not in the hospital, they're at home, but they are participating in psychotherapy and sometimes we'll also have medication management. And it's done on a daily or several days a week basis, sometimes for a few hours, sometimes for the whole day. It really varies, but the idea is to have people who need more than outpatient but are ready to be out of the hospital to get that more intensive care.
Dr. Denise Millstine: We're so glad to do the work that you do as well. Lorelei. Thank you so much.
All right, Lisa, let's talk about Maddy. So the book starts really, really uncomfortably. We drop into meeting Maddy in Las Vegas, which, for the record, is not a good place to be during an episode of mania, after which she's made a series of impulsive and, frankly, bad decisions with much confusion as we're meeting her. She describes a crash. She says the high is over. A familiar, dreaded houseguest come to visit. A hated, sleazy, distant cousin from out of town who shows up unannounced and overstays. Tell us about your decision and to introduce us to Maddy in this phase during the prologue.
Lisa Genova: So I wanted to get your attention right away. Right. So I start there, and then I immediately go back 18 months and sort of build up to what brings us there. I think that it was a way to capture the attention of the reader right away, to show how destructive and devastating and disruptive a manic episode can be, and to hint at what led to it, perhaps, and to get at the destruction on both ends, that here comes the depression that's going, that's following that manic episode for her. And she's seen it before, and she doesn't want it, and there's nothing she can do to prevent that cousin from walking in the door.
So yeah, I wanted to sort of get the reader’s attention fast and then sort of know what this character is in for. So in some ways sort of dreading what's coming is we know what's coming before she does. As we then enter the story of 18 months prior and she's a 19-year-old finishing her first year of college. And she's, you know, experienced a breakup, and school was harder than high school. And she's sort of questioning the default expected pursuit of a, quote, “normal life” and sort of in a bit of a depression. But maybe situationally, she thinks at the time.
So none of this is on her radar, as it is for anyone who is newly diagnosed with bipolar. Like most people don't see this coming. Even if there's a family history. Because you wouldn't, right? Everything up until then has not been bipolar. So it is. It's a shock to everyone who gets this diagnosis.
Dr. Denise Millstine: Well, and I think with those transitions, maybe everybody, if not most people, experience swings in emotions and feelings of heaviness and feelings of being down. And especially if you've had the end of the relationship. So we see Maddy as we meet her in the first chapter, explaining away all the symptoms that she's experiencing in that first year of college.
Lisa Genova: Right. As a human, it's our birthright to experience the full range of human emotions. And who hasn't felt really bummed out at the loss of a relationship or a bad grade, or felt anxious over a new experience, or really excited about some good news? Yeah.
Dr. Denise Millstine: And almost nothing remarkable about her behavior either. Her mother saying, well, she's just going through a hard time. She herself is dismissing it. Lorelei, can you talk a little bit about the timing of that? So now she's just finished high school. She's a young adult, starting college. Would this be a common time we would see symptoms of bipolar disorder come to be seen and known?
Dr. Lorelei Rowe: Yeah. It is one of the most vulnerable times for people to develop these symptoms. A lot of times, people will have a series of depressive episodes before they have that first manic episode, so they'll know that something is going on. But the manic episode often is so confusing. It's a shock as you're saying, Lisa, that this is about the time that it typically happens is in the late teens to early 20s.
Dr. Denise Millstine: And is that what we need for a diagnosis of bipolar disorder? We need both phases of the condition.
Dr. Lorelei Rowe: No, actually it depends on which type of bipolar we're talking about. So if it's bipolar 1, having a full manic episode. So we talk, Lisa talks in the book about the hypomanic episode where the person is having some symptoms, but it's not so severe that it's causing her to need to be in the hospital or causing significant impairment. That hypomania is not enough to diagnose bipolar unless you also have depression.
But if they have a full blown manic episode, then that is enough to diagnose bipolar 1. Bipolar 2 you have to have both the depression and the hypomania.
Dr. Denise Millstine: So we'll talk a little bit about what the features of mania look like when we get to probably her first experience with that. Another thing I thought was interesting in that early chapter, Lorelei, was when she goes to see her pediatrician and she has to fill out all these forms, and it's kind of the first time we see her anyways, thinking about, oh, do I admit that I have felt down this often? And of course she sort of breezes over it and isn't exactly honest with how she answers those questions. But why do people get those forms in those questionnaires when they come to the doctor's office?
Dr. Lorelei Rowe: Well, we really want to make sure that we're screening for problems that could negatively affect people in the long run. If we can catch them early on, we have a better likelihood of effectively treating them and preventing other episodes in the future. Not all the time. There's some things that we can't prevent, but those screeners really do help us catch that.
At the same time, sometimes people have a hard time understanding them. Or as Maddy was experiencing, they seem hokey or unrealistic. She was saying, I think, like a quiz out of Cosmo. Definitely is not that. But I think the other thing that struck me is how much stigma she was associating with those questionnaires, even in that beginning. So way before she had her diagnosis, she was aware of the negative beliefs about depression that worried about how her pediatrician would see her, how her mother would see her.
Lisa Genova: Even how the receptionist who wasn't looking, or the other woman with her toddler in the doctor's office would see her if they could read her piece of paper. So yeah, that worried about what others think of her, which is so common at any age, but in particular that young age. Right?
Dr. Lorelei Rowe: Yes.
Dr. Denise Millstine: This feels like such a mundane part of what we do, these intake forms. But Lisa, I'm so glad that you included it, because it really is an important way that we as health care professionals can provide lots of opportunities for people to reveal the thoughts that they're having, the struggles that they're having, so that we can have open conversations. So thanks for not skipping the patient intake form. I think that was a good detail there.
We said we talk about symptoms of mania. But Lisa, let's talk about Maddy's early symptoms of depression where we see this as a bit more. You describe her waking up in the morning needing to get to a class, and she says she has to force herself to move. She has to force herself to get dressed. She even has to force herself to eat. Can you talk about those common symptoms of depression and how we saw them in Maddy, especially early on?
Lisa Genova: Yeah. And at this point, she's back together with her boyfriend. She's at NYU, the school she wanted to go to. Like things in her life really seem in place, and yet she feels horrible. And so that's a real disconnect in her. She can't she's basically like, what do I have to be depressed about? It can't be depression. And yet she feels physically heavy, like her limbs feel too heavy to move and to walk. The things that she used to enjoy, she finds no enjoyment in. Even like the waffles from the waffle food truck out front that she loves. She just like, has no appetite for that. She's not interested in meeting friends. She's not interested in the school topics. She can't focus on what the teachers saying. She just feels a sort of a despair and a hopelessness and the need to hide this from her boyfriend and the people around her.
Dr. Denise Millstine: So back to that concept that she's aware there's stigma associated and that she doesn't want to be judged. And she also doesn't want something to be wrong, even though clearly.
Lisa Genova: And that's something's wrong. But she doesn't know what it is. You know, she's never been diagnosed with depression before. And there's this sense of denial: I don't want that for myself. So I'm not going to go there.
Dr. Denise Millstine: Lorelei, like one of the important components of symptoms of depression that we see in Maddy and Lisa just mentioned is those physical symptoms. Can you talk a little bit about that? Because I think that's one that maybe people who haven't personally experienced depression might not be familiar with.
Dr. Lorelei Rowe: Sure. Yeah. One of the things that's always interesting to me is that we refer to these as mental illnesses, when they're really whole-body illnesses, whether it's depression or bipolar or anxiety, we experience it throughout our entire bodies. It's not just how we think and feel, but it is that sense of slowing. You mentioned the loss of appetite, and it's not just the loss of appetite for food, but also a loss of appetite for life that nothing tastes good. Things don't feel right. And so the whole body, the whole experience is one of heaviness, of slowness, of achiness, that it just, people don't feel well. And we'll often think of this as more of a physical illness, because it feels physical, because it is, as well as being emotional and mental.
Dr. Denise Millstine: I loved how Lisa said that, even at the beginning of the episode (talking about the topics) that she hadn't yet tackled…I think you said a topic that's labeled as a mental health, because of course, all of these are topics that you've written about are brain issues and whole-body issues as well. But it's important that we not talk about them like they're separate from other what we've traditionally called physical illnesses. So thank you both for highlighting that.
Lisa Genova: Yeah. And I love that you bring that up. It's definitely a conversation that I hope this book helps people participate in, and letting people recognize that. We're just in a moment in time, like we are not in the Age of Enlightenment and like, this is what mental illness is just a thing that exists. It's a term that has been made up to best describe at the time what's happening with brain and behavior and physical symptoms.
But it is a term that I think is not ideal in so many ways. I think, you know, it's interesting that that there are certain disorders and conditions whose origins are in the brain, but that have all of these other effects, behavioral and somatic, and are having to do with the body, and they're labeled as mental illness rather than a neurological condition or a neurological disorder or a brain disorder or a mental health disorder.
The distinction calling something a mental illness is just burdened with an extra level of shame, stigma, dismissiveness, distrust. And so I wonder if there's value in trying to move away from it at some point. I just don't know that it serves us, and I'm open to hearing in conversation how it does serve us, but I don't, I haven't figured out a way that it's useful.
Dr. Lorelei Rowe: I think that's such an important point. The term mental illness does have so much baggage to it, and even mental health. We're talking about mental health disorders. It's a weird term, like it's a health, but it's a disorder at the same time. What are we talking about there? And neurological conditions that are equally or brain based, like, a stroke or epilepsy don't have quite as much stigma associated with them, although sometimes they do have some.
But I'm not sure why we spend so much time kind of differentiating between the head and the rest of the body, as if they're, you know, they really are truly separate. But I think part of it has to do with the visibility of the diagnosis and the degree to which it is seen as intentional or volitional.
In the book, Maddy talks about how her mother thinks she would it be less embarrassing for her to be an addict and being an addict, although also has having a lot of neurological components is in that case, I think seemed to be intentional. It's something that she has control over, whereas the idea that we don't have control over what we think or feel or how we act is really, really frightening for people and it's frightening for family members. And a lot of times people struggle around how much control do I have? Are these emotions real emotions, or is this illness? Are these real thoughts? Or is this the illness? And trying to differentiate between that when people sometimes feel like they can't trust their own minds. And that can be very frightening.
Lisa Genova: Yeah, I agree with all of that. It's interesting though. Like we there is you know, we will call diseases of the heart cardiovascular. Right? So I still get the idea of categorizing like, well, these different disorders, like diseases or disorders like Alzheimer's or Huntington's or bipolar disorder originate in the brain. They're neurological.
But yeah, then parsing it out further and saying, well, these disorders that are mostly behavioral, that result in behaviors that, you know, somewhat scare us or make you distrustful or are so uncertain as a mental illness. I just I think it's a categorization that doesn't serve people well. So I don't know what the answer is yet, but I love that we're opening up the conversation.
Dr. Denise Millstine: Well, yeah, at least it's being recognized that we have created this mind body separation. And we all know our minds are part of our bodies and can be harnessed for helping us to heal, as well as making things worse. So I'm glad that we're talking about it.
*Hey listeners, we hope you're enjoying this episode of “Read. Talk. Grow.” If you find our discussions helpful and insightful, please take a moment to subscribe to and rate Read. Talk. Grow.” on your preferred podcast platform and don't forget to tell your friends to listen. Your support will help us reach more readers and those eager to learn about health through books. As always, feel free to drop us a line at readtalkgrow@mayo.edu with suggestions for books, topics or any comments. Thanks for listening.*
The next topic, Lisa, that I want to talk about is really a difficult one. So there's a description of Maddy cutting herself. She's in the depression phase of her illness and she says that she looks at her skin with a detached curiosity as she punctures it. Then she describes pain and then satisfaction. And this too has this swing in emotions thrill and then shame. She hides the cutting, the self-harm from others. This is a big shift for Maddy from, “I don't think anything's wrong” to suddenly, clearly knowing that she's exhibiting harmful behaviors. Can you talk about that with her as well?
Lisa Genova: Yes. And so, you know, I do a lot of research before I write these stories and for “More or Less Maddy,” I came to know nine people with bipolar disorder and many of their loved ones and other loved ones that didn't know those nine, in addition to all the reading I did. And self-harm, and in particular, cutting was a very common behavior during the depressive episodes of these folks.
What I came to appreciate and understand it, and it's a confusing behavior to them too, but it offers a sense of aliveness and relief from the overwhelm and the confusion of and the burden of the intense pain that they feel both emotionally and physically, and that once it's done, there is that relief. But then there's also, in the aftermath of that, the shame of knowing that they've harmed themselves. And there's physical evidence on their bodies now that need to be hidden from parents and boyfriends and the world at large, so that they won't be judged or distrusted or dismissed.
Dr. Denise Millstine: And maybe something Lorelei could comment about. If somebody or somebody you care about is cutting or harming themselves, this is certainly a sign that we need to bring health professionals into your care. Do you agree?
Dr. Lorelei Rowe: I would say so, yes. If someone is cutting, if someone you care about is harming themselves, it is a sign of extreme pain. As Lisa saying that this is done in a lot of ways, to release that pain, to give a sense that that pain is real in some ways, by making it physical. When we have someone we care about who's doing that behavior, though, it's really essential that we address it with compassion that this isn't something to be disgusted by or frightened by.
It is a sign of pain and a need for help, not a rebellion or a way in which somebody is trying to do something wrong. They're simply trying to cope. And it is the coping mechanism that works at that moment.
Dr. Denise Millstine: Thank you for framing it that way. And thank you, Lisa, for bringing up the difficult topic, which I know a lot of people have to navigate with, like I said, themselves or people they care about.
Lorelei, another really challenging topic is when Maddy receives a notice from the school that she's in danger of failing her course. She's in the library. She knows things are bad, but this is kind of the final straw of just how bad they are, and she starts to think about suicide. She sees there's no way out of this, and that brings her to this very dark place. It's terrifying, as a reader to watch, can you talk about suicidality and bipolar disorder?
Dr. Lorelei Rowe: Suicidality is very common in bipolar disorder. It is one of the disorders that has the highest risk for suicide, among the disorders with the highest risk. And this is in part because the depression is so intense with bipolar disorder. In many cases, it's more intense than it is with a major depressive disorder where the people do not have the swings to mania or hypomania.
It's also often because people experience a lot of impulsivity within bipolar disorder. It may have a lot of negative outcomes as a result of different things that have happened during manic episodes. The shame that we talked about. Suicidality again, we can think of as a coping mechanism, a way of trying to escape severe pain. That people will often feel this way when they feel that they have no other resources, there's nothing else that they can do.
Dr. Denise Millstine: Yeah, it's really challenging, but still, it's the reality of how severe and difficult this condition can be.
Okay, Lisa, you send Maddy to the student health, which is the right place for her to go. And again, she's only experienced episodes of depression up to this point, so she is probably rightfully diagnosed with depression and provided with a prescription for an antidepressant.
She starts taking the medication and literally within a couple of weeks she feels much better. And then she feels amazing. Can you talk about how medications will sometimes unmask bipolar disorder and what happens to her here?
Lisa Genova: Yes. So again, in the spirit of telling the truth under the imagined circumstances, I didn't just make this plot point up for dramatic effect. For people who have not yet been diagnosed with bipolar disorder and are experiencing depression, and without knowing it, there's a family history, there's no reason to suspect that bipolar is on the horizon. And to take an antidepressant seems like a reasonable thing to do.
So the physician prescribes it, she takes it. But the problem is that if what is underlying your depression is bipolar disorder, if that's what is in your neurological circuitry, then the antidepressant can then be the catalyst which precipitates a manic episode. So it launches people into mania. So if you are diagnosed with bipolar disorder, antidepressants are almost always off the table* because they will cause a manic episode.
Dr. Denise Millstine: And Lorelei, what a manic episode we see here. She suddenly is shopping, buying $20,000 worth of clothes. She is making risky, impulsive decisions about sex, and she has these, what we call delusions of grandeur. Can you talk about mania symptoms?
Dr. Lorelei Rowe: It's that experience of feeling this incredible rush of energy where people don't really need to sleep or need to sleep very little. They can feel either extremely high, hyperexcited with this sense of extreme well-being, or sometimes they feel extraordinarily irritable and angry. And with all of that energy comes a lot of distractibility, a lot of movement, a lot of jumping from thing to thing to thing, a lot of great ideas that can get to the point of being delusional.
And in some cases, people will also experience a combination of mania and depression, which we call a mixed episode, where it's like this very angry depression where they're not sleeping, they're extremely hyperactive, and they're irritable and also feeling down and having some of the other symptoms of depression.
Dr. Denise Millstine: Shortly after this, and absolutely terrifies her family with the choices she's making, the way she's behaving when she's with them. You are very compassionate to her and have her picked up by a police officer who, instead of bringing her to jail, recognizes that she's having a psychiatric emergency and brings her to the hospital instead, which is finally where she is diagnosed with bipolar disorder.
Can you talk about the experience and then go further about the medications, you were just talking about how that would change at this point.
Lisa Genova: So yeah, Maddy at this point has done the shopping, the excessive shopping, and the risky behavior with multiple sexual partners and she has been texting her sister all night long about being writing Taylor Swift's memoir, that she's collaborating with Taylor Swift and that she's also been hired by Netflix to write a one-hour comedy special. So she's not sleeping.
And she shows up on Thanksgiving Day to her family home, back in Connecticut and is looking for the car keys because she's planning to drive to Taylor Swift's house in Rhode Island to collaborate on the book. And it does not go well. It's scary. There's violence. I won't give it all away, but it's so shocking and so scary and upsetting to the family that the mother actually calls the police.
At this point, I also, I take my research so seriously. I paused and got in touch with a Boston police officer I know, who helped me with a lot of the research I did for another book called “Inside the O'Briens,” where the main character was a police officer. And I asked him how a police officer would handle this situation, and he gave me the information, “Like, well, if it's a rookie, he might just send her to jail.” Right? He might arrest her. But if he's been a patrol officer for a long time, he's seen a lot. And he'll if he's compassionate, he'll know that that she needs is hospitalization and medication. So I wanted to do the right thing by Maddy. And so, yeah.
So she ends up in a hospital, and now it's the psychiatrist who's evaluating the situation after excluding all possible causes. That could be something like a brain tumor or something metabolic. Something in the blood. It's now a conversation. What's been going on? Tell me about your sleep. Tell me about, you know, how you've been behaving. Tell me about your family history.
And after all of that, information is gathered both from Maddy directly and then also from mom, we need someone else there who knows you well, because while you're manic, you're not a good…you're an unreliable narrator. When you're manic, you're not a good witness to what's going on. Your brain actually doesn't lay down memories well, does not consolidate memories well when you're manic. So that will be spotty to be remembered by the person with it.
So between the conversations with Maddy and her mom, the doctor can then come to a very clear diagnosis of bipolar 1 for Maddy and then talk about the medications that can be used to keep her stable. While she was in the ER, they did put her on a tranquilizer to bring her down fast from that high energy manic state, but then it's an evaluation of what mood stabilizer would work best for you.
And then do we need to add other medications? Is there an anti-anxiety that you might need as well? Is there something else that you might need or down the line? Like, well, maybe we'll choose lithium for you, which is a mood stabilizer that works very well for most people, but maybe it doesn't hit the antidepressive lever as well as it's hitting the anti-mania lever for you, and you keep dipping into depression over time. So maybe we'll add something like a second generation antipsychotic drug that has more of a push on the antidepressant lever.
So this is the beginning of figuring out and trying to tailor a cocktail of medications that can keep Maddy's stable for longer, can reduce the number of relapses into mania depression, and reduce the severity should she swing into either of those states.
We also want to minimize the amount of side effects that she's going to deal with. And I know we're going to want to talk about that. Just so people know, these drugs were not designed for bipolar disorder, we have very little understanding as to the chemical biological nature of the cause of this disorder.
And so these drugs that we have in our toolbox right now are very crude, quite frankly. They're the best we've got. But they're serendipitously discovered drugs for other illnesses that are being applied to bipolar. And so because they're not specific to the illness, they're what we would call promiscuous. They're acting on receptors all over the brain that may not have anything to do with bipolar disorder. And so you're going to have a lot of side effects with these drugs.
Dr. Lorelei Rowe: One thing that really struck me is how lucky Maddy was. To be, not only that the police officer took her to the hospital, that the ER doctor recognized that she was having a psychiatric episode, that she was not on drugs, did not make assumptions that she was being, you know, a difficult teenager. That she had access to psychiatrists that were providing evidence based medicine.
All of that was a really, although very unpleasant for her, of course, was a really fortuitous way of beginning treatment and I think really speaks to her relatively smooth course. And I say that relatively, because it was hard for her. But over the course of those first couple of years, I think it's the median length for diagnosis of bipolar is something like 8 to 10 years. I can't remember off the top of my head.
Lisa Genova: Yeah, I think it's 7 to 10. I'm so glad you mentioned that. And it's like I do this in my books. I do give my character sort of this straight shot to diagnosis. One, in the effort of not writing an 800 page novel, but the other is to show the example of, in the best case scenario, what it should look like as a roadmap for a lot of families.
And yes, I'm so glad you mentioned that because she is in a place of privilege. Like when we mentioned the prevalence of bipolar in the country, it has to be underrepresented in those numbers because you have to come from a place of privilege to get that diagnosis in the first place.
Dr. Denise Millstine: Absolutely. Yeah. I think you've said so much, and you’ve both have said so much in that. Thinking about the psychiatric medications, just a couple of things to highlight what you've just said, Lisa, in terms of, you know, we first saw her with antidepressants. So something to elevate her mood. We see her in mania being prescribed a sedative or something that relaxes her down from the mania and an antipsychotic, which is to help with some of the agitation and confusion that she's experiencing.
And then when she finally is able to get to a psychiatrist who she's going to work with longitudinally, she's able to consider some of the options for what we have called mood stabilizers. But you very eloquently pointed out that is, just naming what we use them for, not naming by any stretch what their mechanism of action is, or claiming that we actually understand what the biology is that's going on in this brain.
And another important part that I want to highlight is how important it is, that Maddy has a witness with her. It's her mother. And so their relationship as a teenager to a mother is somewhat fraught and strained. But I love how the psychiatrist says to Maddy, it's not that I don't want to hear the story from you, but you might not remember. And also you might feel shame about some of the decisions that you made and you might feel like it's hard to tell me. And so somebody who is a step away can tell me what was happening so we can get you the best treatment.
And in the first instance of a mood stabilizer for Maddy, we see her go on lithium, which is an ancient medication. Maybe ancient is an exaggeration, but a really old medication that works but also comes with a lot of toxicity. Lorelai, can you talk about some of the difficulties with lithium?
Dr. Lorelei Rowe: I'm a psychologist, so probably not as well as Lisa can. I can simply say that a lot of medications for bipolar disorder have significant side effects, and patients often struggle with tolerating being on medications that feel bad that are supposed to help them to feel better, especially weight gain and other symptoms can be a real source of frustration and reason why people stop their medications, as she does.
Lisa Genova: Yeah. I mean, like one of the things that I came to appreciate in speaking with all the people I came to know with bipolar disorder, is how awful some of the side effects can be to live with. It is hand tremor, it is weight gain, it's acne, it's nausea, it's cognitive fogginess. It can be really tough to the point where people will wonder. I think everybody kind of wonders this at some point…are the symptoms that I'm experiencing from the side effects of the medications I'm taking to treat bipolar worse than the symptoms that I would experience from bipolar? So I think that figuring out the right combination of meds, whether your medication should be extended release, if there's an antiemetics you can be taking to alleviate the nausea.
What I think I've learned is it needs to be an ongoing collaboration and open communication between you and your psychiatrist so that you can let them know. Like, hey, this is really wearing on me. I can't live like this with these symptoms of these side effects. Like, what can we do? How can we adjust this rather than living with it, bearing it, and then not being able to bear it and go off the medication and that, oh my goodness, now I'm in a manic episode or the worst depression I've ever been in and suicidal. So yeah, the medications are wildly imperfect and they also can save lives.
Dr. Lorelei Rowe: Yeah, it's very much a cost benefit. And I think that's true for many medical problems as well. What I really enjoyed, and I thought you're talking about the collaborative relationship between the psychiatrist and the patient and her family. And I think that's another area of privilege there, where Maddy has a psychiatrist in a private hospital who has the time to spend with her.
And for many people with bipolar disorder who are in community mental health clinics, they're physicians and nurse practitioners or various providers are going to have a lot less time and maybe just as caring and just as qualified, but are limited in how much time they have to spend with their patients. But I did really appreciate how Dr. Weaver was willing to collaborate and talk with Maddy about what's working for her, what's not working for it. I think, again, it's the best case scenario we can hope for in terms of how treatment goes.
Lisa Genova: Yeah. Now, is this a is this a place where we can do better with online resources, either through a bipolar foundation or Mayo Clinic or even my website where we can say, hey, this is what a conversation could sound like in the doctor's office. Look, I know I just did that in the book, but also just in general.
Like what are the questions you can be asking your psychiatrist if you're experiencing the following in your bipolar journey. Just so that they can make the most out of their ten minutes in front of a doctor?
Dr. Lorelei Rowe: Yeah, absolutely. I agree. I think that that is an area where we can do very much, can do a whole lot better in terms of providing that education to people with all sorts of illnesses. And also, I think, providing education to, our clinicians to be able to ask the questions when patients are not able to. Because those are hard to do and we saw that with Maddy when she she's very, very depressed. Her ability to articulate what she needed took so much energy. And she really had to fight for it. So it's equally, if not more important that clinicians be trained to ask those questions. And I think we are. But emphasizing that as part of the standard of care.
Dr. Denise Millstine: And we can absolutely put some of those resources in the show notes for listeners. There is an enormous amount of freely available content that Mayo Clinic publishes that's directed to patients for people who have questions. And we will select some to put in the show notes, for sure.
I want to wrap up on a note of hope. So for listeners who haven't read the book yet, please go buy the book and read it. This is just the beginning of Maddy's story, and you go on quite a journey with her. We're not going to spoil or tell you where she lands, but while this is a very heavy topic, we'll add a teaser that she does explore life as a comedian not only when she's in the middle of her mania, but something that she's quite drawn to as well.
I wonder if you both would make a comment about balance and bipolar disorder, and how, moving forward, a hope could be for somebody living with bipolar disorder that they can find this balance in their life between their therapies, their support team, and living their full life.
Lisa Genova: So I mean, this is a disorder of instability. And so it is an instability of mood, emotions, sleep, circadian rhythm, thinking. It's sort of a holistic view is everywhere in your life. Where you can find balance is going to contribute to your stability. So it's not just the medications that we're relying on. It's oh, I'm noticing that I am suddenly getting less sleep. I had to take a transatlantic flight. I didn't sleep on the plane. Or oh, I had to be up late because we were celebrating my parents anniversary. If there's a reason that you know you're going to lose sleep, enlist support from other people, keep an eye out for me. Maybe I can take a nap. How do I account for counterbalance, that imbalance? Am I eating well? Am I exercising regularly? Is every hour is every sort of domain in my life in balance? And that will contribute to the balance as a whole. And then also maybe allow for if 90% of me is in balance and 10% falls out of balance, maybe I've got enough in place that I can be resilient to that, to any triggers that come along in that 10%.
It's a level of self-awareness, knowing what my triggers are. It's like, oh, for Maddy, it's if she starts talking too much about Taylor Swift and that she might have a special relationship with her. If she's not getting enough sleep. If she goes on a shopping spree. If she starts to think too negatively. If those automatic negative thoughts come back and she starts spiraling down a hole of depression for some reason. Can she or other people recognize, hey, you're getting out of balance, let's try to bring you back. So, I think there's a lot of hope and reason to have agency over your ability to stay in balance once you know what you're dealing with.
Dr. Denise Millstine: So well said. Lorelei?
Dr. Lorelei Rowe: I think that balance. You know it's something that we all need. And for people with bipolar disorder. And I really appreciate the point in the book where Maddy is thinking about has bipolar disorder versus is bipolar, that these are people living with an illness. They are not the illness. And for people who have this illness, the balance that we all need is just more important.
None of us do well when we don't sleep, when we don't eat properly, when we spend all of our time working and don't engage in enjoyable activities. But for people with bipolar disorder, they're a lot more prone to get to that place of losing interest in everything, or being so interested in everything that it's hard to slow down.
I'm going to make a quick plug for psychotherapies that are very helpful for bipolar disorder, that address these issues. David Miklowitz family-focused therapy, which addresses the beliefs that family members have about bipolar disorder and address the type of emotional over involvement or hostility that family members sometimes have due to just not understanding the illness.
And then Ellen Frank's work on social rhythm therapy and recognizing that people can exert control over their circadian rhythms, and that if we do those things, we're much more likely to reach that sense of balance, not only in day-to-day life, but balance and mood.
For people with bipolar disorder, balance and mood doesn't mean they don't feel emotions. And I think that's the other thing that's really important, is we will feel the full range of emotions that everybody else feels. And the key is not saying you're too excited or you're too sad. There's a difference between depressed sad versus regular sad and helping people to identify that know when what they're feeling is within that range of what's healthy for them. As opposed to getting to the extremes.
Dr. Denise Millstine: We will put all those resources and connections to those that you've just mentioned in the show notes.
I want to thank both of you for joining me today to talk about bipolar disorder, to talk about “More or Less Maddy,” which I hope our listeners will go out and read. Thank you.
Lisa Genova: Oh my goodness. Thank you Denise. Thank you. Lorelei, I thank you so much. This has been the best conversation, related to my book. I love that you so get it and appreciate the detail and authenticity that I hoped for to get it right about bipolar disorder. So thank you so much.
Dr. Lorelei Rowe: Thank you for putting out a book there that does present that authenticity that I think people will be able to see themselves in.
Dr. Denise Millstine: “Read. Talk. Grow.” is a product of the Women's Health Center at Mayo Clinic. This episode was made possible by the generous support of Ken Stevens. Our producer is Lisa Speckhard Pasque and our recording engineer is Rick Andresen.
Visit our show notes to see the books discussed today and for links to other health education materials. Follow us on social media like Instagram and Facebook, or reach out directly to our email readtalkgrow@mayo.edu with suggestions for books or topic ideas. We'd love to hear from you.
This podcast is for informational purposes only and is not designed to replace a physician's medical assessment and judgment. Information presented should not be relied on as medical advice. Please contact a health care professional for medical assistance if needed for questions pertaining to your own health. Keep reading everyone!
*A healthcare professional may cautiously add an antidepressant to manage depression in bipolar disorder. But an antidepressant sometimes can cause a manic or hypomanic episode. Antidepressants should be prescribed along with a mood stabilizer or antipsychotic medicine.