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Former Director of the NIMH Thomas Insel
The nation's psychiatrist weighs in on the 4 p's of recovery
This post is part of the accompanying tips, resources, interviews with experts, and stories of recovery that accompany the exclusive serialization of Cured: The Memoir. Help put mental health recovery front and center. Become a free subscriber and please spread the word by telling others about Cured and mental health recovery.
I’m so fortunate to have interviewed the psychiatrist and neuroscientist Thomas Insel. To say he’s an amazing, lovely man is an understatement. He’s one of the most prominent mental health researchers, policymakers, and thought leaders in the United States. He’s also championed me and my work to bring the possibility of mental health recovery to everyone in the most generous way.
As Director of the National Institute of Mental Health (NIMH) from 2002 to 2015, he was known as “the nation’s psychiatrist.” He oversaw a budget of over $20 billion, most of which went to mental health research, not providing services, a decision he felt would lead to the best outcomes.
After leaving the NIMH, he went on to head the Mental Health Team at Verily (formerly Google Life Sciences) and serve as special advisor to California Governor Gavin Newsome. But the most noteworthy turn in Insel’s career has been the move away from research as the answer to our mental health crisis and toward delivering care, particularly for those with serious mental illness (SMI). (Insel defines SMI as mental disorders that cause serious functional impairment or disability, particularly schizophrenia, bipolar disorder, major depressive disorder, post-traumatic stress disorder, anorexia nervosa, and borderline personality disorder.) Insel has since said, “[I]t was my job to make a difference for Americans with mental illness. I should have been able to help us bend the curves for death and disability. But I didn’t. Because I misunderstood the problem. Or maybe it’s more accurate to say that the problem I was solving by supporting brilliant scientists and dedicated clinicians was not the problem that faced nearly fifteen million Americans living with serious mental illness.”
Serving those with mental illness has become Insel’s mission. He co-founded Humanest (2020), an online care system and community to give more people access to mental health care. His new book Healing: Our Path from Mental Illness to Mental Health attempts to shift the conversation from those with relatively mild mental health concerns to the severely ill and neglected. The book calls for us to focus on recovery, which depends on three p’s: people (support), place (a refuge in which to heal), and purpose (work). Although many mental health professionals have been working toward and urging us in this direction for decades, this plea coming from someone as influential as Insel has a chance of being answered on a large scale.
Tom and I spoke via Zoom. He’s so personable and passionate about improving the mental health system. We jump right in. When I read Healing, it was the first time I heard someone in a position of power in the psychiatric community mention recovery. We sometimes refer to my memoir Pathological, the prequel to Cured.
Enjoy! And please share this with those who’ll benefit.
Sarah Fay: What is the message behind your book Healing?
Thomas Insel: The point of the book was to ring a bell on and raise awareness about the ridiculous situation that our jails have become mental hospitals and our mental hospitals have become jails. Part of it was trying to figure out how we allowed it to happen and part of it was trying to figure out what it’s going to take to actually reverse this.
Fay: Did you have a particular reader in mind as you were writing it?
Insel: I really wrote it for family members. Originally, the book was about homelessness and incarceration but when I tried to sell it to Penguin Random House, the editor said, “Homeless people don’t buy books. It’s an important topic, but that’s not going to sell.” I thought, Okay, but the families of homeless people and the families of people incarcerated do in fact buy books. So I wrote it for them.
Fay: I’ve been in the mental health system for thirty years and been treated by many clinicians. Only once was I told that recovery was possible and that was my most recent psychiatrist. There’s no question that knowing that mental illness isn’t chronic restored me to health. How does recovery fit into the reforms you suggest in your book?
Insel: Recovery is a really important concept. The mental health community likes to talk about remission. Okay, but recovery is something different. It’s way beyond remission in that it allows people to thrive. It tells people that they can be not only hopeful but that this experience—as awful as it might be—could at some point, be a source of strength. It’s the adage that you're taught in medical school: When you break your leg, once it heals, the point of the break is the strongest part of the bone. That’s a really good metaphor for how we should think about this. Use the illness but focus on recovery and helping people thrive.
Fay: How do DSM diagnoses fit into the recovery model?
Insel: I wrestled with that when I was at the NIMH. DSM has nothing to do with science or clinical care. A large part of what drives it is the APA; it’s their largest source of revenue. DSM is a really expensive book at a time when any diagnostic manual should be open source and in the public domain. The APA is basically a publishing house, and that’s their bread and butter.
I’m not anti-DSM. I was around before we had DSM-III, and I was part of putting that together. It was very, very helpful because we didn’t have a common language before 1980. But as one of my mentors once said to me, if you tell me someone has schizophrenia, you’ve told me 5% of what I really want to know. Part of our problem—whether it’s DSM or anything else—is we’re asking the diagnosis to do much more than it should.
What we have to do for this field is get beyond just focusing on symptoms and thinking much more holistically about what people need, particularly with serious mental illness. We need to look through a broader lens and engage on these other aspects which are not generally part of what we mean by health care.
Fay: What does it take for someone to recover from mental illness?
Insel: Recovery requires the 3 P’s: people, place, and purpose. Our commitment to patients with SMI should extend beyond acute care to helping them get the social support, the safe environment, and the sense of purpose that all of us need to thrive. One model for this is the clubhouse movement which should be seen as part of rehabilitative care and supported by public and private health insurance.
Fay: Why don’t we offer extended care after someone’s been in crisis in mental health? Where’s that bias coming from?
Insel: It’s the difference between health and health care. Health care is the repair shop and health is what happens out on the highway. The system is built around health care. It’s built for payers and a little bit for providers, not for patients or families. So it’s very expensive. We’re spending enormous amounts of money on acute care and crisis care when what we need is continuity of care: resources and interventions like supportive housing, supportive employment, and supportive education. It can be expensive, but we save on what we’re spending on acute care. We know these programs reduce the need for emergency room visits and hospitalization.
It’s stunning to me that we don’t think about mental health the way we think about physical health. There’s no question your insurance will pay for physical therapy, but there aren’t a lot of public or private insurance that will pay for supportive housing, supportive employment, and supportive education. People do much, much better with continuity of care. If you looked at the outcome data, you’d say, Oh my God, if this were a pill, it would be a blockbuster. These programs are really effective, and yet they aren’t covered, so patients don’t do them and it’s very hard to get them to scale.
Fay: Patient engagement is a problem when it comes to recovery. Why do you think that is?
Insel: It’s complicated. Certainly, there are a lot of negative attitudes towards psychiatric and psychological treatments and some of that is well earned because. There’s been a history of some pretty horrendous treatments in the past, but there’s a real misunderstanding about how effective some of them are now.
Frankly, the illnesses themselves get in the way. Unlike asthma or diabetes or cancer, where the worse you feel the more likely you’re going to get care, here it’s the other way around. You may have had this experience. When you’re despairing and depressed, you feel hopeless. When you’re anxious, you’re avoidant. If you have a psychotic episode, you lose your judgment and don’t even think you’re sick anymore because you think it’s everybody else. The challenges to engagement are baked into these illnesses. That’s tough. That’s a tough problem to solve.
We need to frame the question around When do people engage? Instead of expecting people to come to us, we need to figure out how to go to them and meet them where they are.
Fay: I consider myself to be fully recovered from serious mental illness. I’m also still taking medications. The withdrawal I experienced trying to go off my meds was life-threatening, so I don’t feel I can go off medication, nor do I want to try. I’m fortunate in that I have relatively few side effects. There’s this idea that mental health is somehow absent psychotropic drugs. How does medication fit into the recovery model?
Insel: For me, recovery is not about whether you’re on or off meds; it’s really about how you’re functioning and whether you’re able to do the things you want to do—whether you’re able to have a life.
At this point, psychotropic drugs are really empirical. I don’t think we know enough about their long-term use. There’s a little bit of data that says that when you take people off, they do better, but it’s confounded and not clear. Some people will relapse pretty quickly or even years later when they come off medication.
I think we have to understand for many, many people, medications are something that they’ll continue to take. I was trying to explain this to somebody the other day about what medication is and isn’t for and why we need both medication and psychological treatments to build skills. It’s like someone with a tremor learning to play the violin. There’s no pill you can take to suddenly have the skills to play the violin. But medication for the tremor will allow you to pick up the violin and learn the skills that you need. It’s still a lot of work and takes a lot of time, but it can be done.
Fay: Healing is more than a book for you. What made you start to think of it as a movement?
Insel: The book is really the flagship for a social movement. I thought, Okay, the book might get attention for a week or two, but how do we keep that conversation going? A friend who’s a journalist came to me and asked me about starting a digital publication about the intersection of mental health and social justice. I used my advance to fund Mindsite News, a nonprofit that focuses on injustices and solutions: What we can do? How can we do better when it comes to crisis care and continuity of care?
Then a lot of things started to come together. Ken Burns agreed to do a film and that documentary “Hiding in Plain Sight” is coming out in June. It focuses on youth mental health. We have advocacy efforts underway with groups like the CEO Alliance.
The book gave me the roadmap of what we needed to do; now, it’s about the execution.
With a very clear vision, in five to ten years, we will not be incarcerating people because they have a brain disorder and we won’t have people with brain disorders homeless eating out of dumpsters.
Fay: A lot of media and public attention goes to those with AMI who experience relatively little dysfunction. How can we shift the focus to those most in need?
Insel: That’s definitely true when it comes to the world of innovation. Last year, we had $5.1 billion in venture capital money going into digital mental health. Almost none of it went to serious mental illness. I mean, it’s not like people with SMI don’t need the innovation, but almost all that money went to people with less serious problems, partly because they could pay. And it was easier to build a company around either direct-to-consumer or working through employers, so a lot of the big digital mental health companies mostly market to employers. Eighty percent of people with serious mental are unemployed.
Fay: Are the “worried well” taking resources away from those with SMI?
Insel: I don’t know. You have to look at numbers. One thing that is happening right now in 2022 and last year as well is that a lot of people from the public mental health system are joining the gig economy. We’re losing a whole workforce from county mental health and campus mental health. I don’t know how we fix that, but it’s a huge, huge problem right now. I can’t blame people. They can make more money, work better hours, and don’t have to schlep to an office. They have a lot of autonomy. But it’s a real threat to our public mental health system. We are in a workforce crunch right now and the people with the most experience are often the people who have left.
Fay: In Healing, you outline many steps for us to take to improve the mental health care system. If you could make only one of them happen, what would it be?
Insel: The greatest injustice is the criminalization of mental illness. It’s unconscionable that we have ten times more people with serious mental illness in jails and prisons than in our public mental health institutions. The advent of 988 in July of this year may begin to change that. When we develop a behavioral health crisis system—not just a suicide prevention system—that includes someone to call, someone to come, and someplace to go, we will begin to shift from a criminal justice approach to a health care approach. We don’t need to incarcerate people for having a mental illness.
Fay: What’s the one thing you want everyone with an SMI to know?
Insel: The message for people with SMI and their providers has to be recovery. And, as I say in the book, recovery is more than remission.
Fay: What one thing do you want their families to know?
Insel: Families have traditionally been blamed or shamed for having a loved one with SMI. We need to help them understand that they can be part of the solution. The evidence for family psychoeducation is impressive. Yet too often families are not included in the care plan. They end up becoming the navigators, the caretakers, and often the first responders, but the health care system—or the criminal justice system—has not fully engaged families as a key asset for recovery.
Read Pathological: The True Story of Six Misdiagnoses (HarperCollins 2022)—the prequel to Cured.
Pathological was an Apple Best Books pick, hailed in The New York Times as a “fiery manifesto of a memoir,” and named one of the sixteen best mental health memoirs to read by Parade Magazine. It was featured on NPR, Oprah Daily, Salon, Forbes, The Los Angeles Times, and more.
Called “powerful, mesmerizing, and unputdownable,” Pathological recounts my twenty-five years in the mental health system. It’s a gripping, cautionary tale of what can happen when a young person negatively over-identifies with a psychiatric diagnosis and continues to do so into adulthood. Buy it now.