Podcast: Recognizing That You Aren’t Alone With Dr. Ken Duckworth
Scott talks to Dr. Ken Duckworth about his newly published book, You Are Not Alone: The NAMI Guide to Navigating Mental Health, where he interviewed NAMI members about their mental health journeys in an effort to help other people living with mental illness. Ken shares relatable first-person stories from the book that illustrate the diversity of mental health journeys, offers insight and advice collected from renowned clinicians, and reminds us that help is available to those who need it.
Ken Duckworth, MD, is the chief medical officer for the National Alliance on Mental Illness (NAMI). Dr. Duckworth is double board-certified in adult and child/adolescent psychiatry and has completed a forensic psychiatry fellowship. Ken is the author of NAMI’s first book, You Are Not Alone: The NAMI Guide to Navigating Mental Health.
Jenn: Welcome to Mindful Things.
The Mindful Things podcast is brought to you by the Deconstructing Stigma team at McLean Hospital. You can help us change attitudes about mental health by visiting deconstructingstigma.org. Now on to the show.
Scott: Alright, everyone. Thanks so much for joining us.
We’re excited to have Dr. Ken Duckworth here with us, who’s about to release a book called “You Are Not Alone,” which is a guide for families, and for just people in general, who are navigating, or trying to navigate, all things mental health.
Before we dive in, here’s a couple of things to know about Ken. He is a board-certified psychiatrist and acts as the chief medical officer of NAMI, the National Alliance on Mental Illness.
He’s an assistant professor of psychiatry at Harvard Medical School, and was previously the acting commissioner and medical director for the Mass Department of Mental Health. One of the great things about having Ken join us, I will say, is that he’s seen the impact of mental health in many different settings.
Prior to working at NAMI, he’s worked on the Assertive Community Treatment program, early psychosis program at an elementary school, a health plan, and with people who are unhoused. So he’s got a lot of great perspective from all different angles.
And then, one of the things I did want to note is that Ken’s quite passionate about the work that he does, something that was instilled in him by his loving father, a gentleman who lived with bipolar disorder. So Ken, thank you so much for being with us today.
Ken: Thank you so much for having me, and thanks everybody for joining.
I’m in a hotel room in New York City, so forgive my quirky non-welcoming background. I’m on Gayle King’s CBS This Morning show to talk about the book for somewhere between 13 seconds and five minutes, you know how it goes.
So I’m in New York City, so I’m not in my usual office. So I want to tell you a little bit about the idea for the book.
I grew up with a dad who was loving and delightful, and also very sick. And my family was from Philadelphia, and when I was eight, I saw the police drag my dad away while he was yelling. Nobody talked about it, nobody explained anything about it.
The next thing I know, we’re in a U-Haul, driving to Michigan. And I, as an eight-year-old, said, “I wonder if this has something to do with that,” but nobody could talk about it.
And so, this begins my understanding, or my quest to understand, what is this thing that is so strong that it can move a family 350 miles but you can’t talk about it? The answer is mental health and mental illness.
So I was not a science kid. I only got into the medical schools that did not require calculus. I never won a science fair in fifth grade, my volcanoes never really had game. I wasn’t a logical person to become a doctor, and there had been no doctors in my family.
But this mystery of this thing that would visit my dad and turn him into a person who would hallucinate, communicate with a microwave oven, and then, after treatment, he would be loving, delightful, and my cousins would say, “How come you’ve got the nice one?”
And so this is the curious, little admixture that gets me into this. So over time, I’ve looked at this from the family perspective, the first person perspective, I also came to Boston to train as a psychiatrist, and I’ve done a lot of different things, as was mentioned earlier.
So either I’m very curious about what helps people, or actually can’t keep a job. You can decide for yourself over time, which is more accurate for me. So the book I wanted to write, I would go to Brookline Booksmith in Brookline... I live in Roslindale, I’ve done my whole career right here in Massachusetts.
Brookline Booksmith and I’d think, “Isn’t that funny that there’s 100 memoirs and 100 textbooks?” I don’t find that either of them very helpful for average people. Very interesting. So this started about 20 years ago.
I’d go every five years, and I’d think, “Surely, somebody has written this practical book with real people in it and national experts. It’s a practical guide.” Isn’t that funny? And then, of course, Amazon turns up and I would Google “mental health recovery book,” “mental health practical guide.”
And what would come up is the Big Book of AA, which is a kind of recovery process, or a kind of guide, but it’s not exactly what I had in mind.
So when COVID happened, I noticed, in my media calls as the National Alliance of Mental Illness’ Chief Medical Officer, they went through questions about violence and psychosis, to how do people cope?
How do you deal with isolation? What is recovery? Can peers teach each other ‘cause we don’t have enough professionals? How do you deal with addiction, relapse?
All of a sudden, the media questions had gone from questions I didn’t want to ask... answer, to questions I looked forward to answering. This is when I realized.
So I pitched NAMI’s chief medical officer that we should have a book, and I should interview real people who use their names, which is true throughout the book. And that would help with the shame and isolation that I knew as a boy, and I still observe as a killer in American mental health and addiction.
People don’t feel comfortable discussing things, so they don’t talk about it. So I pitched this to NAMI and he said, “Great, go.” And so, I never, I’m a rookie author. As you can see, I have gray hair. I had one good idea, five publishers bid on the book.
I got a cool publisher, Molly Stern. She had previously edited Michelle Obama’s “Becoming.” She starts a new company and “You Are Not Alone” is her first book. All the proceeds, all the royalties, from this book, I’m donating them to NAMI. I gave the copyright to NAMI.
This is a straight up love gift for everybody like my dad and everybody who loves them. I felt like this was a book that was inside of me, and I just had to write it. So I feel very fortunate to have had this opportunity.
The book is selling extremely well, comically well. Like, “are you kidding me” well. And... In pre-sales. The book comes out tomorrow and as you know, as I mentioned, I’m going to have my 13 seconds of fame on CBS This Morning to talk about the book.
So I interviewed people from 38 states, ages 16 to 100. One woman said she was old as dirt, so you can decide how old that might be. She didn’t say. 11 different self-identified race and ethnicities.
People said who they were. One person said they were Hispanic, the next person said they were Latinx. 12 people said they were Black, 12 people said they were African American. Some people identified their gender and sexuality, some did not.
The idea was you identify yourself. So I have about 50 people who are first-person experience, about 50 people who are family members. How did the families learn to communicate? How did the families problem solve?
Then I have about 30 people that are both first person and family. They marry somebody with a mental health condition and they have a mental health condition. They had a mental health condition. They feel like they’re in recovery, their kid gets a mental health condition.
So let’s see, 50, 50, 30. I also, because I’m NAMI’s chief medical officer, NAMI’s the largest mental health group in America, I know everybody. And I said, “Hey, would you answer a really common question that I get as NAMI’s chief medical officer?”
Again, I’m going for practical help here. “I have bipolar disorder. Do I really have to take these meds forever?” Well, who cares what Ken Duckworth thinks? Why don’t I have the king of bipolar disorder, Andy Nierenberg, from Mass General Hospital answer that question? He answers the question in a beautiful way.
“I can’t find a therapist.” “How do I find a therapist?” “I can’t get my family member to agree to get help,” so I asked Bill Miller, who invented the whole field of motivational interviewing, to answer that question thoughtfully and compassionately.
“What are my rights in the workplace?” “What’s a disability accommodation?” These are all the things that I wanted a practical book to have.
And now, tomorrow, thousands of movies slinged across America ‘cause it appears to have happened. It was an entire team effort, I want to emphasize that. I am the author, but I involved many people to help me, including the 130 people who courageously volunteered to share their stories.
They come from Cape Cod to Hawaii, that’s east to west. From Anchorage, Alaska to San Antonio, that’s north to south. They’re all joining me on the Book Panel Across America. So tomorrow, I’ll be doing an event in New York City with four people from New York City who are in the book.
So it’s a great privilege, it’s quite the adventure. I’d be delighted to talk to you more about it. As you can see, it’s a realization of a dream. I do want to say, having never written a book, if you want to write a book, send me an email, @email, and I’ll coach you up.
I’m just a little behind with the book tour. But I feel like I knew I had a book in me but I wasn’t really sure, and now it’s come to pass. So I’d like to take questions. I know Shannon is helping with questions.
Scott: Ken, before we dig into audience questions, I have one thing I was hoping you could tell the audience a little more about. What does NAMI do to help support families and communities?
Ken: So the National Alliance on Mental Illness, NAMI, has 700 organizations across the country. So there’s NAMI Cambridge, there’s NAMI Boston, there’s NAMI Plymouth, there’s NAMI Cape Cod, just to give you an ex... An idea.
NAMI Middlesex County. They offer support groups, they offer family education, peer-to-peer education. They also, in addition to support and education, they do a lot of advocacy.
The 988 number that came out on July 16th, that you don’t have to go straight to the police if you have a mental health crisis, that’s a lot of NAMI advocacy.
Mental health parity, which many of you have heard about, is a good example of one of the things that NAMI advocated for. You have Dost Öngür, a national leader in the early psychosis movement, NAMI helped to make that happen by advocating in Congress for the funding to make sure that people with early psychosis could get thoughtful strengths-based care.
NAMI’s the only job I ever wanted. It’s a cool job because I get to hang out with people who are working the same problem that I’m working. But I want to emphasize, of the hundreds of thousands of members of NAMI, I’m really the doctor. I’m also a family member, so people say, “Hey, could you have your medical team join us?”
I’m like, “Dude, there’s no medical team.” These are heroes living with these conditions, and people who love them; mothers, fathers, sisters, sons, daughters. So I have one associate medical director, Christine Crawford, she’s wonderful.
I met her at Mass General Hospital in the Child Psychiatry Fellowship, and I said to her, “Would you like to be my helper?” And so, McLean, Mass General has been part of the fabric of NAMI, and Christine is working on the next book, which I can tell you about, if you’re interested.
So it’s a great question. NAMI’s a very special group. Many people have said to me over the years, “If only I knew about NAMI five years ago.” My goal is to have this book all over bookstores. I want it to be one of the books on the airport.
I don’t want NAMI to be the best kept secret. All the services are free. All of them are free. Every single service is free.
So if you take an eight-week course on family-to-family, if you join a support group, you’re in a city and you want to hang out with other people who understand a little bit about what you’ve been through, boom! In Kansas City? It’s happening, right? There’s a list everywhere.
In Bucks County, Pennsylvania, out north of Philly, there’s 65 groups a week. So you’ve probably heard of NAMI Walks. There are 77 NAMI Walks across America from last Saturday to November 5th, and another 50 in the springtime.
I’m like “What?” So I’ve been to the Boston NAMI Walk, Scott Rauch has attended several times, one of your leaders at McLean Hospital.
And I just want to say it’s a great way to participate in a movement where mental health is actually, truly considered health. We’re not there yet, we have work to do, but this book is one little pebble on that journey.
Scott: That’s great, thank you. One of the things... One of the things you brought up about the book was about the numbers, you said about 130 people were interviewed. And you used examples of real people and the different aspects and challenges that they face as it relates to their mental health.
And you use their names, and their locations, and the real quotes that get to the bottom of what they were commenting about. And just kind of... Put a name with a quote. It’s not just Dr. Ken talking to you about something. You’re hearing from actual people who’ve experienced these things firsthand. You know--
Ken: It’s radical. Within the field of medicine, it is radical ‘cause the typical book is the doctor writes the book and says, “my patients are my greatest teachers, they’re all confidential.” The joy of this is these aren’t my patients.
I have a big platform at the National Alliance on Mental Illness, I’m flipping the narrative where people with lived experience, family members, how do they figure out how to communicate? How do they work the problem of talking about a diagnosis? How did they solve some of the problems that they faced in access to care?
And in figuring out, “is a dog going to be helpful to me or a problem for me?” I mean, I’m talking about real, practical stuff. So it was a joy to do this process.
And again, the pandemic gave me the gift of Zoom interviews. I interviewed 130 people for about 150 hours, and there’s still a police officer in New Jersey who would keep talking if I didn’t end the interview.
I mean, he had so much to say, he was amazing, but I think it might have been a three hour interview. It was amazing. He’s in the book. And... The joy of the Zoom is I could talk to somebody in Hawaii, and someone in Texas, and someone in Massachusetts on the same day.
Then, I could record their transcripts and say, “This is the quote, Trevor,” “This is the quote, George,” “This is the quote…This is the quote I want to use. Is this okay?” Send it to them. “Yes, Ken, that is exactly what I want to say.”
And I’d say “It covers some vulnerable information.” And they said, “Ken, if it happened to me, it happened to millions of other people.” And so, this is this radical notion of how to build a book from the ground up with real people sharing what they learned.
So I could tell you dozens of stories throughout the book, but I think if you take a look at it, you’ll realize real people... And they don’t mind being contacted. They’ve already had... Betsy O’Brien from South Carolina, she’s already been contacted.
Somebody read the book and said, “I think I should talk to you, Betsy.” These people aren’t secret, they aren’t hiding. They’re resources, just like NAMI is. So that’s kind of the secret sauce of the book and I must have struck a nerve because the book is selling extremely well, to my great surprise.
Scott: So you kind of answered my question for me, but I still want to know the one thing. So I think, using real world exam... Actual people makes the reader feel like they’re not alone.
They’re not hypothetical, it’s not something NAMI made up to fill the gap. It really is an actual person with an actual name, people that can actually be contacted.
Ken: I don’t have email addresses in there, but you could find people.
If you live in Michigan and you’ve lost a family member who died by suicide, there’s a wonderful woman who works at the University of Michigan who gives a beautiful quote about how she’s made meaning of her life.
She’s not a secret person. You Google her, you’ll find her. I mean, she’s right there in Ann Arbor if you want to talk to her.
Scott: Did people have any reservations about being this upfront in public, in the book or--
Ken: It’s interesting! One of the major American publishers... As you know, there’s about five, and I got five big bids, that’s all I’m going to say. One of them said, “You can’t get people to use their names.”
And I said, “You were right 10 years ago,” but something changed in our society, and I can’t tell you whether it’s Naomi Osaka or other celebrities, other athletes, Michael Phelps, prominent people dying by suicide, I can’t tell you what it was, all of NAMI’s good work, but I was certain that I could find volunteers.
No one was ever pressured into doing this. In fact, I gave them nine different ways to get out of it. I’d say, “Okay, now you volunteered to be in the book.” I do a whole phone call with them. “You understand that we’ll be using your name?”
One person said, “Oh, I didn’t know that. I didn’t read the email. Thank you very much, I’m not ready to share my story.” Great. Big win. I don’t want anybody in the book who isn’t at a place in their life, whether they’re 25 or 80, to share their story.
What I observed is that people want to make meaning of what they’ve been through, and so the old choices were privacy and anonymity. So I’m not interested... I’m not encouraging people to go tell their boss they have bipolar disorder tomorrow. I’m not encouraging them.
What I’m encouraging you to do is read the book and you’ll find a half a dozen people who’ve lived with this and have managed it, and have either found a better workplace, or relationships, or strategies on exercise and meditation, how they’ve used lithium, right? How they’ve figured out how to live with some of the consequences of side effects of medicines.
So that’s what I was always interested in, is real, actual people. Real people. But they’re not my patients, and so there’s no HIPAA problem or anything like that. People signed a very intense informed consent form.
Then I sent them their quotes, and I said, “Are you sure you want to use this quote?” People talk about being abused as a child and how that impacted their drug addiction later in life. A woman lost her children to the Department of Social Services, got them back! And I said, “Are you sure you want to share that?”
And what she said to me is the recurrent refrain, “Ken, if it happened to me, it happened to thousands of other people, and that’s all there is to it, and I want to have a voice.” The overall experience of people that I interviewed, which was just such a privilege.
“I never thought my suffering would mean anything to anyone. And you, happily, gave me a chance to tell my story,” and whether that’s how to work a marriage when one person has severe depression, that’s an adorable couple from Iowa; how to learn to let go of your son who has schizoaffective disorder, I mean, not controlling his life.
I interviewed the father and he discussed his process, and then the son, who doesn’t live with his dad... Son lives in Michigan, dad lives in California. Son says, “Do you know when you fall out of a boat and you’re drowning, and your parent jumps in to try to save you and then you’re both drowning?
That was our life before my dad learned that he could trust me, even though I had schizoaffective disorder, even though I was struggling with things. He would love me, and trust me, and not be all over me.”
That’s a story of a true family, and that may not work for you. Something different might work for you. I happen to love that story ‘cause he took the family to family class, which is a NAMI classic, validated and randomized control trials to improve hope and empowerment, and I thought “Isn’t that amazing?”
These guys transformed their relationship. Where formerly, the father was all over the son 24/7, and he came to realize, “I got to learn to let this go. He’s got to live his life, he’s in his 30s now. I can’t be all over him just because he has a lot of symptoms and he is vulnerable.”
And the son is now a peer specialist in Michigan, and living a great life. It was a beautiful interview with the two of them. Most of the interviews were quite beautiful.
Scott: Ken, I got to ask, how did you find the folks who participated in the book?
Ken: Okay. Most people, I’d give a talk at NAMI Wisconsin, random state, NAMI Connecticut, NAMI Georgia, and I’d say at the end of my talk, “Hey, I’m writing NAMI’s first book. If you want to be in it, you have to use your name. Send me an email.”
So I had very few people that I reached out to. Very few. There were a few public people who’ve given TED Talks who I thought were remarkable people, and I just said them, “Would you like to be in NAMI’s book?”
The plane is leaving with you or without you. Nobody is dependent upon you telling your story. John Moe, who wrote a cool book called “The Hilarious World of Depression,” I was on his podcast show three or four times. And we became kind of friends, and I said, “John, are you interested in being part of this?”
But mostly, it was people from NAMI. The executive director of Hawaii. “Ken, I grew up in Japan, we can’t talk about mental health. I want to be in the book ‘cause I want people to know that I figured out how to talk about it, even though I’m Japanese by origin.”
So people would find me and I would say to them, “Think about this, don’t agree to this. Think about it. Talk to your husband about it. Talk to your kids about it. You’re going to talk about opiate addiction in this book, think about it with your wife.
If you have a therapist, talk to them. There’s no rush here. There’s no urgency, the plane is leaving. I’m happy to have you on it,” but the book is not dependent on any one sort. In fact, I only wrote in the book proposal, that I was going to interview 50 people. It just got so interesting, I kept going.
So I had no intention of 100 people. My intention was to find people who wanted to be able to share their story, and I was so moved by some of the people, I thought, “Okay.” I talked to one person in Tennessee and she said, “Have you talked to Carol?”
And I said, “No, who’s Carol?” She said, “Carol’s a legend in Tennessee, you have to interview her. I’ll make an email connection.”
I said, “Hey, the plane’s leaving with or without Carol.” Carol, “Of course, I want to be in your book. This is amazing what you’re doing. Nobody ever asks people with the experience of illness what they’ve learned. It’s all about what the doctors know.”
And again, I like doctors, I hang out with doctors, but the idea is it’s a both/and world. You can have medical treatment, you can also have recovery tools. So that was basically the process. I went for diversity of both experts and individuals in the book.
And fortunately, it seemed to sort out pretty well. It’s not perfect diversity, but it’s strong. It’s very strong overall in diversity.
Scott: One of the things that we have a couple questions about is around stigma. I should say, I work pretty heavily in the area of a mental health stigma.
We have a project called “Deconstructing Stigma” at McLean, about storytelling and getting into public venues to give exposure--
Ken: Storytelling. Boom! So there’s research, Patrick Corrigan, University of Illinois, says contact with real people is the best way to change attitudes. So running ads, “Mental wellness is health.” “Mental health is health.”
That’s fine, that doesn’t change anybody’s attitude. Meeting people with mental health conditions, so there’s a program NAMI has called “Ending the Silence.”
I interviewed people who teach that course in the schools. A gentleman named Mike in Wisconsin says “Any time I go to McDonald’s, people say, ‘Hey, weren’t you the guy who talked about mental illness in my health class?’”
And he says, “Yeah, I was that guy, actually. That’s what I do, that’s kind of my jam.” And they said, “It’s great ‘cause it got my brother into treatment. It probably saved his life.” And he says to me, “I’m just a guy walking around with schizophrenia. Imagine what that has done for me, teaching this class.”
So I think storytelling, sharing experience, is one of the pieces of magic. So some people might know the “Humans of New York” project and book. It’s all stories of people in New York.
And people who have gray hair might remember Studs Terkel, who interviewed real people about their aspects of life, not mental health. So I billed this book as Humans of New York, or Studs Terkel, meets the mental health journey.
Scott: So when it comes to stigma, there’s a couple of different reasons general... Probably many different reasons, why people are afraid to disclose that they may be struggling with something.
It could be they’re afraid of being rejected or treated differently. And then, sometimes, people also, when it comes to stigma, they apply it to themselves. They think that they can’t do certain things, achieve certain things, because they are struggling with their mental health.
Would you talk just a little bit about what families are typically experiencing as it relates to stigma, both the individuals themselves but also the families, and how they’re afraid to disclose to others about the--
Ken: Very interesting. I wouldn’t say that everybody should go out and disclose. What I wanted... I found people who were at a place in their journey that this was valuable to them to give to others.
I interviewed a woman from the South Asian community and she said, “Nobody talks about mental health or mental illness in our community. Nobody!” She posts on Facebook, her own mental health condition.
What happens? She gets 300 messages from people in the South Asian community, thanking her and sharing her experience. Was that courageous? Incredibly. Incredibly courageous.
Did she take a risk? She took a big risk. Is there downsides for her? I think it’s still yet to be determined. But she said, basically, this thing that millions of people have, we got to be able to talk about it. We just have to be able to take this on.
So I think families find, at NAMI, that they’re welcomed and they find people who think like them, and are kind of in the same boat, and that’s very reassuring. Nobody wants to feel alone, hence the title of the book.
Scott: You mentioned that people were willing to speak much more openly today than they were even 10 years ago.
Do you think there’s any... I mean, you alluded to this a little bit. You’re not really confident there’s one thing in particular that’s leading to people feeling more comfortable and open. Is there anything that you’ve seen trend-wise that could possibly explain why it’s only...
I mean, 10 years is not that much time in the grand scheme of things, and it seems like people are kind of at a different point than they were 10 years ago. I mean, any insight into why?
Ken: Yeah, I think mental health parity helps. So back in the day, I was a private practitioner, a psychiatrist, right across the street from Mass General.
When I was a Commissioner of Mental Health, I’d see patients after work, two nights a week. Only had $500 of outpatient benefits and you could only get two hospitalizations per year.
Whereas if you had diabetes, you could go into the hospital as much as you want, and you could go see your doctor as often as needed. So we had placed... We, as a society, had placed these artificial limitations on treatment services.
So since parity 1.0... That’s a whole other discussion. Parity, we’re still not quite there.
But since the insurance companies have been prohibited from denying care as a structural idea, just as a structural idea, you can’t just give people with mental health two hospitalizations and people with lupus unlimited, that’s what we were doing, I think it’s opened up.
And I saw it when I was at a health plan here in Massachusetts, utilization of mental health went up. People then thought, “Okay, I have a benefit I can use now.” So that’s part of it.
I think another part of it is that the rate of anxiety and depression among young people has been rising. You could have a whole discussion on how much climate change, or school violence, or uncertainty fits into that, but the facts are clear.
There’s a rising rate of anxiety and depression. And also, for many, not all, subpopulations, we’ve been seeing a slow and steady increase in the outcome of suicide. Suicide generates a tremendous amount of grief and distress on many people in the world, in a family.
So what I would say is, it’s not one thing. I think Simone Biles is amazing. Demi Lovato is amazing. Famous people do something and then you say, “I can join this club.” There are guys in the NBA who talk about their mental health now.
Unimaginable, right? And like Kevin Love can do it? Guys getting a triple double from time to time, he’s a cool dude. I was a high school basketball player. That’s a guy I can identify with, minus the millions of dollar contract.
But like, the dude is a real person that I watch on television. That’s a real person. He’s kind of like me. And he admits to leaving a game in the middle of the game, ‘cause he had a full panic attack as part of his anxiety/depression.
So I can’t really explain it, other than there’s thousands and thousands of people that are sharing their story at businesses, your program at McLean. How long has that been going?
Scott: Five years.
Ken: Five years! So you’re making my point, right? That program didn’t exist five years ago, so something’s changed in the water. How do we get to the point where a small number of Americans smoke? How do we get to the point of a designated driver?
I don’t think you can really identify one thing, but somehow society has moved. And if I got one thing right in the book, I intuited that people would share their story. I only shot for 50. I had no idea it was just going to keep going. I had no idea.
“Oh, you can’t do this book without talking to Jeremiah. You can’t do that.” Jeremiah was raised in foster care and he was traumatized so badly, he started to hear voices, and chess saved his life. Playing chess! Chess... He couldn’t be touched ‘cause of his post-traumatic stress.
He found a way to compete, and engage, and be successful. Got to talk to Jeremiah, you know? So over and over again, people would find other people. “Oh, you haven’t talked to Nadine about her service dog? You’ve got to. You can’t write a book without talking to Nadine.”
So again, some of the referrals come from the community. And then, I reached out to Nadine, “Any chance?” She said, “Are you kidding me? I’m dying to get into your book. I didn’t have your email.”
So this is the kind of thing that was happening, really, all across the country. It took me a whole year. I’ve been working on the draft outline of this book for five years in my mind. Mostly, I would throw them out. I would think, “I’ve never wrote a book before.”
I never really thought I could do it, I didn’t grow up with writers. And then, when COVID happened, I immediately saw, this is our moment, and so I started to do three interviews a day through Zoom, about an hour each, and then I’d write in between, and I’d walk my dog, and occasionally see my wife.
My wife asked me at dinner one night, “Could we talk about something other than the book?” And I said, “No. I actually... My whole 24/7, I dream about the book. I wake up at three o’clock in the morning about the book. I walk the dog, I think about the book. I can’t stop thinking about the book.”
If any of you’ve ever done a PhD, this is what people describe, that kind of overwhelming creative process. I’m an MD, all we have to do is stay alive, and they pound you, and graduate you.
They beat you up and keep you going, but you never have to write a creative writing project. So this is unusual in that regard.
Scott: So one of the quotes I had pulled from the book, that I thought was really important.
It was really because I usually have a hard time putting this into so few words, and you did a great job with it, is “mental health services have been systematically underfunded, ignored, or allowed to be second-class in health insurance policies for decades.”
And I’m bringing this up now because you were just speaking to parity and things like that. Are there any... What actions can our viewers take to be part of the change around mental health being supported?
Ken: The Massachusetts Association for Mental Health is the group that does the best work here in Massachusetts. Danna Mauch leads it. There’s probably 500 people that come to the annual dinner, right? Which is actually happening this evening. I can’t be there.
But that’s one example. Getting involved with the National Alliance on Mental Illness, right? There’s chapters all across Massachusetts. We’re here. I mean, we’re around, you know? So I think engaging in this.
Also, fighting your insurance company if they say no. There are reviews that are independent that bind the health plan. And when a health plan loses a few of them, they have to change the rules. I’ll just leave it at that. So stay active, don’t give up.
This is a problem we need to continue to work. The mental healthcare system could not be more disorganized, chaotic, and underfunded. It could not be. If you tried to make it impossible, you couldn’t work the problem to make it worse.
If you could find a child psychiatrist that will accept your insurance and has an appointment, you should immediately stop what you’re doing and purchase lottery tickets. This is the luckiest day you’re going to have.
Now, that is a problem ‘cause there is no cardiologist that doesn’t accept insurance. Nobody’s ever had a radiologist private pay, never, never. I had my knee replaced due to years of loose living, basketball, and tennis, what did they do? They charge an enormous amount of money and they accepted the insurance rates.
Mental health rates are too low. So practitioners say, “I’m not accepting your insurance.” That’s a structural payment problem. It’s right in the structure of it. That’s fundamentally unfair. So we haven’t really made mental health part of health.
Scott: Thank you, that was a... That’s great. Switching gears a little bit, you brought up the story before about the... Well, “young man,” you said he’s in his 30s, living with schizoaffective disorder who’s now working as a peer specialist.
Scott: Would you talk for a moment about what a peer specialist is and their role in recovery?
Ken: So a peer specialist is a person who takes their experience, in his case it’s schizoaffective disorder, and he said, “Ken, I thought I’d lost a decade of my life. I was homeless, psychotic, using substances.”
Then he said, “When I applied to become a peer specialist, I realized these are qualifications. That that wasn’t a wasted decade. That, in fact, the fact that I knew what this was like from the inside out was the best reason for me to become a peer specialist.”
I also asked a national peer specialist in the back of the book, where I have our experts, “How do I use my experience to become a peer specialist?” And he lays it out. “Here’s how I did it. Here’s the organizations that do it. You should consider doing it.”
Scott: Overall, there’s just... There’s a tremendous amount of great insight into the book, I’ve been through it. And there’s so many different things in there that I would love for people to know.
For the folks who haven’t read the book, if they’re unable to read the book, I want to give you an example. There’s some key takeaways, I would say, about mental health and I’d love to know a little bit about what some of those would be for you, for the general public.
I’d say for me, one of the things I want to scream from the rooftops is about the importance of early intervention when people are struggling, especially when it comes to child and adolescent mental health. They...
People put things off, they think a child is magically going to snap out of it, or they think the problem’s going to go away, and sometimes they definitely don’t, and sometimes it gets very, very serious.
And the data shows us about the importance of that early intervention. Are there a couple of basic things that you wish that you could just download into every person’s brain about mental health?
Ken: Half of all mental health conditions occur before age 15. Half! So I interview a woman who has an anxiety disorder, it has onset at age seven. Most people can’t imagine.
There are families all across America that will say to their kid who’s panicky and anxious and not sleeping and overwhelmed, “Just go to school.”
Now, is there a role for structure and encouragement? Of course there is. But the possibility, they might also need some kind of additional support. I interviewed a 15-year-old woman... She was 15, now she’s in her 30s. She’s an actress.
She got cognitive behavior therapy manual sent to her home. She didn’t want to go to a therapist, she was too ashamed. She didn’t want to go to a school guidance counselor, but she was smart enough to figure out that cognitive behavior therapy works for anxiety and panic.
She used the workbooks. She’s 15 years old, I want to emphasize this. I put that person in there because real people can figure this stuff out. She worked this problem. So I think early intervention is important.
Your Dost Öngür, who’s really a treasure of the early psychosis movement at McLean, he bought some books for all of his programs and I’m very grateful to him. I interviewed two people who got into these early psychosis programs, called coordinated specialty care.
This is a transformational way of approaching care. It’s positive, strengths-based, it doesn’t lean on medicines. It’s usually held in a different clinic or service than the traditional mental health center.
So I volunteered at such a program for five years, it was absolutely fabulous. People would come, they were all trying to figure out, “How do you do relationships when you’re living with a psychosis?”
Bringing the families in, having conversations, figuring out what condition it was. Psychosis is a symptom, not a diagnosis. So I would say those are five extremely happy years of mine.
Scott: Early in the book, we were talking about if someone you knew, or yourself, or someone that you love, needs help, there was a quote that said “the best way to assess your blood pressure is to take it,” which I absolutely loved. And it’s--
Ken: You don’t know what your blood pressure is! You have no idea and neither do I!
And when you’re in CVS, you stick your arm in that crappy little blood pressure thing, and it says it’s 180 over 100. You know it’s not right, but you also know you better check it out. It’s a signal.
So all the PHQ-9, Patient Health Questionnaire-9, GAD-7, the trauma scale, all these things exist. These are the same things you would take in your doctor’s office. This is not in place of a therapist. This is not in place of a professional evaluation.
But if you go to CVS and see your blood pressure is too high, you pay attention to it. If you take the PHQ-9 and you have a score of 18, that’s a high score. You should talk to your doctor, primary care doctor. Find a mental health practitioner, you should get going. You should attend to this.
So it’s not diagnostic, but it’s a useful way. People used to go to the doctor’s to learn their blood pressure. “Oh my God, I can’t learn my blood pressure for six months. That’s when I see Dr. Smith again.”
The whole idea of the democratization of medicine is we don’t have biological measures. You can’t take a blood test to see if you’re depressed, or if you have bipolar disorder, or if you’ve been traumatized. You can’t, we’re not that good. Brain’s too complicated, let’s be humble, let’s acknowledge that.
But these screening tests have been validated on hundreds and hundreds of thousands of people, and they do have some correlation to clinical reality. Mental Health America, NAMI’s sister agency, has all these screening tools online.
Scott: So I think some people are definitely going to be more motivated than others to either take one of the assessments themselves, or would be more open to it if someone suggested it to them.
Do you have any advice for people who are trying to get someone to maybe engage with treatment, or even a self-assessment?
Ken: So I interviewed the man who invented a strategy called motivational interviewing. So let’s say you say to me, “Ken, you’re depressed, you need help.” I say, “No, I don’t,” right? It’s kind of the response.
He would say that people have a kind of committee inside of them, and when you push on one side of the boat, the boat rights the other way, right? You say, “You need help.” I say, “No, I don’t,” right?
Bill Miller, who invented motivational interviewing, is in part four, the expert part of the book. “How do I get somebody in my family to seek help when they don’t want it?” And he discusses the basic principles of motivational interviewing. You listen for something the person is worried about, you don’t tell them the way it is.
They have something they’re concerned about, you develop that and answer questions. And there, of course, are a lot of resources on motivational interviewing. But let’s say you say, “Ken, I think you’re depressed,” and I say, “No, I’m not.”
That kind of ends the conversation. Another way to do it is you say, “Ken, you’ve been complaining a lot about sleep. Can we talk about that?” Now, that’s something I bring to the table. I’m not happy about it. I’m not ready to accept a possible mental health diagnosis.
“You’ve got to be kidding me! I don’t have that and sleep problems.” But you could say, “Well, alright, fine. Let’s talk about the sleep problem. I’m worrying about such and such, had some stress at my job.”
“Would you consider checking your sleep out with your primary care doctor?” “Maybe, I’ll think about it.” Stop the conversation, stop. They’re thinking about it. Let them think about it.
Don’t pound them and say, “Ken, remember I told you you were depressed last week and you said, ‘no, I’m not.’ I told you I was right.” Don’t do that. Let them think about it.
You can’t make a person do things in most aspects of mental health, so you have to find the most respectful, non-confrontational, relationship way of finding a pathway so that they feel they can accept whatever the idea is.
The primary care doctor or pediatrician. Most people like their doctors. Some people are afraid of psychiatrists, but most people like their primary care doctors. And so, if I had a sleep problem and you said, “Ken, can I drive you to see your primary care doctor?”
I’d say “Yes,” right? Okay, you’re helping me now. You’re not telling me the way it is. You’re following something that was important to me. And then, my primary care doctor would ask me about sleep and would ask me about other things.
And maybe I’ll get to an assessment. Very common question, and I wanted to include motivational interviewing in the book for that very reason.
Scott: In the chapter that was around trauma, you shared a story about a retired police captain named Robert.
Scott: And I... That really resonated. That story really resonated with me because Robert was struggling so much that his wife told him that if he didn’t seek help, he might as well move out.
Ken: Hit the road, Jack! That was after three days! So his police officers were in a shootout and he says, “You know on TV, where there’s blood everywhere? That was my team.” And he became very traumatized.
And within three days, his wife said, “You’ve got to deal with this.” So that is probably an exception to the motivational interviewing rule, right? You’ve got to know your quality of your relationships.
Robert now teaches police officers. Teaches them about how to deescalate situations with people with mental health problems.
But he’s taken this post-traumatic experience, which he lived and got better from, with cognitive behavior therapy, some other strategies that he used, and now he’s become a teacher by helping other people. Back to peer specialists, a lot of people find value in them.
Scott: One of the things about Robert that really caught me was the fact that he found out that he was... He was susceptible or... He said... The thing that stuck in my brain was that he said that he felt like he was Superman--
Ken: “Oh, me? I’m Superman!”
Scott: It helped him realize--
Ken: He’s a cop, he’s got a gun. People look to him for everything, from help, to directions, to problem solving. The idea that he, a man, men are less likely to seek help, less likely to go to therapy, more likely to die by suicide.
Emphasis, I want to say, the male not seeking help thing is another concern. And I interviewed a young man who grew up in fraternity life, and said, “It’s unimaginable that you would seek help as a man, just unimaginable, in my particular fraternity culture.”
And of course, problems flow from that. But Robert transcended the first thing by saying, “Alright, fine. I’m Superman as a police officer. I’m a dude. I’m taking care of things, I walk around with a gun.
The truth is I can’t sleep, my thoughts are out of control, I can’t handle the day.” And so, it’s just really important.
Scott: Question around child and adolescent mental health. Does your book offer suggestions or tips for parents around children...
Or I’m sorry, around adult children who are experiencing mental health challenges? Are there other resources you would also suggest?
Ken: So this is parents of adult children?
Ken: Yeah, that’s the most common parent-child dynamic. So I didn’t really do too many stories of parents and young kids.
My colleague, Christine Crawford, is writing that book, a guide for parents for children ages zero to 18. The publisher wanted another follow up book ‘cause this book is going to sell more than a couple copies, and they’re like, “We want to do one for parents.”
And so I called Christine and I said, “Can I ruin your life and make your career?” And she said, “Sure. That’s an interesting opening line.” I said, “They asked me to write the next book and I don’t want to do it. I want you to do it.” So she’s working on it now.
Parents and adult children. Adult children with schizophrenia, adult children with bipolar disorder, adult children with addiction. This is a key part of the book, how parents in the Family-To-Family Program... George and Patrick, that I discussed earlier, is a good example.
The man who’s drowning off a boat and wanting to be trusted to swim to shore, not have his father jump in and drown with him. So there are stories like that. And there’s five chapters devoted to families and interviews with people in the family space.
Four chapters, first-person lived experience. Seven chapters where I try to lay out the problems and challenges with first person stories and family stories throughout. And then, in the expert section, I have the traditional research experts, right?
The leading person in their field. The director of the National Institute of Mental Health answers the question, “Why should I participate in research?” So again, who cares what Ken thinks? I’ll get the leading person on planet earth to answer that question, right?
So that was the structure of the book, so families are a big part of the book. NAMI started out as a family-only organization and over time, it has grown to become also the largest first-person peer group in America, and that was intentional.
Through elections, and boards, and decision making. It wasn’t like the... Parents began ‘cause the psychiatrist were blaming them for their kids’ schizophrenia, and they said, “You’ve got to be kidding me.”
And I interviewed a man in Montana who was told that exact thing. And it’s like, “You’ve got to be kidding me. I know I’m just a guy, I’m a dentist, but my wife and I love each other, we have another kid who doesn’t have schizophrenia.
Why would this be my fault? What did we do wrong?” That’s kind of the origin story of NAMI, but NAMI has grown tremendously since then. It’s no longer families only. It’s no longer anti-psychiatry. They treat me great. I feel treated great.
But NAMI is very interested in research. You’ve got to be able to learn more about the brain and that’s rooted in the origin story, “Are you kidding me, you’re going to blame me for my kid’s schizophrenia?”
So families are a key part of the book, but it’s not only for families. So when a family member is struggling, let’s say their son is hearing voices and doesn’t know he’s sick, so I interview a family who’s going through that, I discuss what I observed in my own life...
Again, I’m part of the book. The book is not my memoir, but my experience is integrated in the book. Then I have a person who describes losing awareness to psychosis, like a fog rolling in. I think that’s helpful to families to learn from the person who’s experienced it and can talk about it.
And I think it might be helpful for some... Or people who are peers to learn how their families have managed some of the uncertainty and anxiety. So the reason I did this book together was ‘cause I think we can all learn from each other.
Some people told me I should write two different books, a book for families and a book for individuals, and I said, “I actually don’t think that’s the way to go. I think the way to go is you do the whole ball of wax together.
If you don’t want to read about somebody who’s just like you, read about somebody who’s like your mother. What is she experiencing? What does she think?”
Scott: No, I love the perspective, thank you. That’s fantastic to hear, that you took that approach. You mentioned before, mental health and an employer and disclosing in the workplace.
Would you speak briefly about your thoughts on that?
Ken: I interviewed a woman named Wendy who had bipolar disorder, and she was treated very badly by a non-profit, and she was told, basically, “We don’t want you here. We can’t handle you.”
And then, she went to work at my alma mater, the University of Michigan. It’s just a happy coincidence that the team I obsess over on Saturdays, and... Watching college football, is the organization that treated her so lovingly.
And by having a large employer, large employers have a little more freedom to do what they said to her. “Wendy, we love you. We just want you well. You take the time you need.” So she didn’t know anything about ADA, Americans with Disabilities Act and accommodations, that’s in the back of the book.
I had a national expert lawyer say, “What are my rights in the workplace?” So again, if you ask for an ADA accommodation, you still have to do the job. It does not excuse you from the responsibilities of the job.
But it could be, for example, you need 8:00 AM off to go to a substance use meeting or to a NAMI support group, and can the employer get to yes with you on that? Or night shifts are a big problem, is there a way you could not work night shifts? That doesn’t...
So it’s not magic, but the employer culture is part of the culture chapter, right? And how... Different employers have different work cultures. That’s why I don’t encourage people to read the book and say, “Hey guys, I’ve got post-traumatic stress disorder and addiction.”
I don’t encourage people to do that. I encourage people to assess the culture of the place they’re working. That’s the cue.
Scott: One last question then I’m going to let you go. One of the things you talk about in the book is about the responsibility of taking care of family with mental health challenges, whether it’s a child, a teen, or older adult.
And I think, pretty often, we’re told to practice self-care, but I think a lot of the suggestions, generally, as far as I’m concerned, they’re kind of... They’re a lot of easier said than done.
Ken: Yeah, I’ll say--
Scott: What do you recommend?
Ken: Yeah, they say that to nurses on the intensive care unit during COVID, “practice self-care.” Fundamentally, the way to practice self-care is to give them days off, right? But you don’t get to have a day off if you’re a caregiver, if you’re a parent.
So I just think it’s really important to acknowledge, right? The limitations of the idea of self-care.
But I do think talking to other people who are like you, talking to other people, sharing your experience with other people, or having something that has nothing to do with the person you care for, whether it’s playing tennis, or a book club, or the McLean Monday Night Author Club, whatever it is.
Something that has nothing to do with caregiving, right? I think people find a lot of different ways, but the general admonition, “improve your self-care,” to some people, feels like it’s a kind of blame that’s unhelpful.
So you have to recognize the situation. Of course, we should all do a better job of attending to our own personal wellness. But the rate of physician suicide is high and saying to those people, “you need to work on your wellness plan” is one thing.
Another thing would be to say, “If you get mental health counseling, it won’t count against your medical license.” That’s closer to wellness. And by the way, you’re allowed to work part-time here at fancy hospital.
If you’re dealing with something, if you have an ill parent or child who deal... That’s the ultimate self-care, is to structure your life so that it’s not overwhelming.
Giving somebody an overwhelming task and saying, “You should really work on your self-care.” That’s not really how I think about it.
Scott: I have to say, I think everyone very much appreciates your insight today. That’s going to conclude our session. Alright, thank you so much. Have a great night.
Ken: Good night, everyone, thank you.
Jenn: Thanks for tuning in to Mindful Things! Please subscribe to us and rate us on iTunes, Spotify, or wherever you listen to podcasts.
Don’t forget, mental health is everyone’s responsibility. If you or a loved one are in crisis, the Samaritans are available 24 hours a day at 877.870.4673. Again, that’s 877.870.4673.
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The McLean Hospital podcast Mindful Things is intended to provide general information and to help listeners learn about mental health, educational opportunities, and research initiatives. This podcast is not an attempt to practice medicine or to provide specific medical advice.
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