YOU ARE NOT ALONE
You Are Not Alone
Ken Duckworth, MD
“Powerful and poignant, this book is for anyone who has struggled with mental health challenges. As a therapist myself, I value the bravery with which these people share their personal experiences to help destigmatize mental health for others. Let’s talk about it all.”
- LORI GOTTLIEB, AUTHOR OF MAYBE YOU SHOULD TALK TO SOMEONE
A USA Today Bestseller
The NAMI Guide to Navigating Mental Health―With Advice from Experts and Wisdom from Real People and Families
Written with authority and compassion, this is the essential resource for individuals and families seeking expert guidance on diagnosis, treatment, and recovery, featuring inspiring, true stories from real people in their own words.
ORDER NOW
You Are Not Alone: Voices of Recovery Podcast
You Are Not Alone: Voices of Recovery is an insightful podcast series from NAMI that draws from among more than 100 interviews conducted by Dr. Duckworth for the book, showcasing real people sharing authentic stories of their mental health journeys.
ABOUT THE BOOK
Millions of people in the United States are affected by mental illness every year. The Covid-19 pandemic not only caused new or aggravated symptoms in people, but further exposed the shortcomings of the American mental health system. Despite advances in telehealth, the healthcare industry remains chaotic, underfunded, and often inaccessible, and many people are asking themselves the same questions: What does it mean when different doctors give me different diagnoses? What if my insurance company won’t cover my treatment? Will I have to be on medication my whole life? Will I ever feel better? Families and friends are often left in the dark about how best to help their loved ones, from dealing with financial and logistical issues, to handling the emotional challenges of loving someone who is suffering.
You Are Not Alone is here to offer help. Written by Dr. Ken Duckworth with the wisdom of a psychiatrist and the vulnerability of a peer, this comprehensive guide centers the poignant lived experiences of over 125 individuals from across the country whose first-person stories illustrate the diversity of mental health journeys. This book also provides
Practical guidance on dealing with a vast array of mental health conditions and navigating care
Research-based evidence on what treatments and approaches work
Insight and advice from renowned clinical experts and practitioners
This singular resource—the first book from the National Alliance on Mental Illness—is a powerful reminder that help is here, and we are not alone.
REVIEWS
“In this invaluable book, Dr. Duckworth amplifies the voices of real people who have dealt with mental illness, both doctors and patients. His crowd-sourced method will help people facing similar challenges feel connected to a vast community. If you read this book, you cannot feel alone in your struggles.”
- ANDREW SOLOMON, AUTHOR OF THE NOONDAY DEMON AND FAR FROM THE TREE
“Wonderful and necessary. Dr. Duckworth provides excellent clinical information and practical advice, placing it within the deeply human context provided by those who know firsthand the pain of depression, trauma, anxiety, bipolar disorder, and schizophrenia.”
- KAY REDFIELD JAMISON, PHD, PROFESSOR OF PSYCHIATRY, JOHNS HOPKINS SCHOOL OF MEDICINE, AND AUTHOR OF AN UNQUIET MIND
“Families dealing with mental illness, which means virtually all families, need a guide that conveys hope, wisdom, and actionable information. You Are Not Alone is that guide. Unlike previous books, this is a practical guide to help all of us navigate the stormy seas of a loved one’s mental illness. A must-read.”
- THOMAS INSEL, MD, FORMER DIRECTOR OF THE NATIONAL INSTITUTES OF MENTAL HEALTH AND AUTHOR OF HEALING
“A unique, hopeful catalog of first-person lived experience with mental health collated by a humane, experienced clinician. These shared journeys will help others feel less isolated and overwhelmed. Highly recommended as an essential guide for every physician, mental health provider, and program dealing with any aspect of mental health. You Are Not Alone is a treasure.”
- BRUCE D. PERRY, MD, PHD, AUTHOR OF WHAT HAPPENED TO YOU?
About NAMI
This is the first and only book fully supported by the National Alliance on Mental Illness, America’s largest grassroots organization helping people with mental illness and their families build better lives. There are more than 600 NAMI State Organizations and Affiliates across the country.
Ken Duckworth, MD
KEN DUCKWORTH, MD, is the chief medical officer of the National Alliance on Mental Illness (NAMI) and has worked with NAMI since 2003. Ken is board certified in adult psychiatry and child and adolescent psychiatry, and is an assistant professor of psychiatry at Harvard Medical School. He was previously acting commissioner and medical director at the Massachusetts Department of Mental Health. Ken has worked on an assertive community treatment team, at an early psychosis program, at an elementary school, at a health plan, and with people who are unhoused. His passion for this work comes from his loving dad who had bipolar disorder. Ken lives with his family in Boston.
NAMI CEO Dan Gillison in conversation with Dr. Ken Duckworth about the book You Are Not Alone
CONTACT:
To inquire about booking Dr. Duckworth for speaking engagements, or about corporate or bulk orders of the book, please contact NAMI@zandoprojects.com
Book Tour
Join Dr. Ken as he travels the country to discuss You Are Not Alone with leading mental health experts, advocates, and participants from the book. This tour schedule will be continuously updated. Stay tuned for more to come!
September 15, 3pm-4pm ET – Virtual
National Institute of Mental Health Speaker Series
In conversation with NIMH Director Josh Gordon on NAMI and NIMH’s powerful ongoing partnership
September 17, 10am-11:30am ET – Orlando, Florida
NAMI Florida State Conference
Plenary session and book signing
September 19, 6pm ET – Virtual
McLean Hospital Author Series
Webinar: Recognizing That You Aren’t Alone
September 21, 7pm ET – Brookline, Massachusetts
Brookline Booksmith and NAMI Massachusetts
Launch event and livestream
September 25 – Anchorage, Alaska
Barnes & Noble Anchorage with NAMI Alaska
Book signing
September 26, 8am - 1pm GMT– Anchorage, Alaska
NAMI Alaska Mental Health Symposium
Keynote and book signing
September 29 – Seattle, Washington
Town Hall Seattle
Arno G. Motulsky Science series co-presented with NAMI Washington, NAMI Seattle, NAMI Eastside, and NAMI South King County. Books sold on site by Third Place Books.
September 30 – Virtual
NAMI Indiana State Conference
2022 Keynote: Lived Experiences Featured in You Are Not Alone
October 1 – Denver, Colorado
NAMI Colorado State Conference
Opening plenary
October 2, 5:30pm ET – Philadelphia, Pennsylvania
Head House Bookstore
In conversation with New York Times Bestselling Author and UPenn Professor Angela Duckworth
October 13 – Princeton, NJ
NAMI Mercer County
Discussion and book signing
October 18 – Virtual
NAMI Montana State Conference
Presentation
October 26 – Ann Arbor, Michigan
Heinz C. Prechter Bipolar Research Program
Presentation and book signing
October 27 - Ann Arbor, Michigan
NAMI Washtenaw County
Presentation and book signing
November 11 – Albany, New York
NAMI New York State Education Conference
Panel presentation
November 18 – Des Moines, Iowa
NAMI Iowa State Conference
Panel presentation
November 30, 6pm PT – Menlo Park, California
Kepler’s Literary Foundation
In conversation with Angie Coiro, in conjunction with the Mental Health Association of San Mateo County
December 10, 10am - 11am GMT– Honolulu, Hawaii
NAMI Hawaii Annual Meeting
Presentation and book signing
Stories
Part of living with this condition is you have to make sense of it. We have immense capacity to be resilient, but we can’t do that without that sense of meaning or purpose.
-Carlos Larrauri
Carlos A. Larrauri found NAMI while searching for support groups after being diagnosed with schizophrenia in his early twenties. Support from his close-knit Cuban American family and a longstanding love for learning were two key aspects in his recovery journey.
I talked to my mom, she came to campus, and we sat down: my mother, myself, and my academic advisor. He said, “Carlos, you’re an adult. You have the right to privacy. I don’t have to share anything that’s happened to you on campus.” I said, “With all due respect, I have a Cuban mother. I’ve never had the right to privacy.” That joke was a rare moment of lucidity in the psychosis. Otherwise, I was pretty gone by then. It was a little ray of light that shined through in that moment. And, from there, we began the process of getting care.
There’s moments that don’t seem to have sense or reason, and sometimes you have to find the humor to some degree, because, otherwise, all you’re left with is the tragedy.
Now a member of the NAMI Board of Directors, co-chair of the NIMH-funded AMP Schizophrenia research program, a psychiatric mental health nurse practitioner, and law student, Carlos’s lived experience is one of his many strengths as a provider, researcher, and advocate.
Early on, recovery meant getting back to school because that was the thing I had top of mind. It meant not necessarily achieving all the milestones at the same time, but achieving them at the right time, maybe one at a time. You can get there, but maybe you need more time, or more steps along the way.
When you realize you’re not alone, that is what ultimately propels you to take that first step into treatment.
-Stephen Smith
I was completely at rock bottom, didn’t know what to do; I thought my life was over. And then, online, I saw that there were people out there who were describing their experience and it was pretty much identical to mine, and there was a name for it: OCD. OCD––that’s exactly what I’m going through. I thought, “you're not alone.”
Stephen Smith battled with obsessive compulsive disorder symptoms for years on his own before discovering through online communities that others shared his experiences and were finding treatment methods that worked for them. Eventually, he found exposure response prevention therapy, or ERP, that helped him cope with his symptoms. Inspired to help others find relief through ERP, Stephen founded NOCD, an online platform that connects individuals to licensed therapists specializing in OCD treatment with ERP.
We spent years in research and development just making sure the clinical outcomes were excellent, making sure we had the right team in place, et cetera. And by, really, the middle to end of 2019, we figured out how all that should come together. And then we started launching NOCD therapy. Now we’re doing tens of thousands of treatment sessions per month. We’re growing and we’re looking to help as many people as we can. We have an incredible team, almost 100 operational people, and hundreds of therapists.
For Stephen, finding a community of people with shared experience was a critical step in his recovery journey. He now lives in San Antonio with his wife, two kids, and two Bernedoodles.
I think for me, my definition of recovery just comes down to feeling like I can practice gratitude and truly mean it.
-Diana Chao
It's easy to become bitter and angry when you're trying to heal in a world that seems to want you to be anything but healed. I tried so hard to do those gratitude journal things and all that, and I was so angry. But over the years, I've grown to really be able to appreciate the beautiful things in my life. And that gratitude, also meant for me that I was untangling myself from all the negative energy that had ensnared me for so long. It showed that I had the capacity still to be human, in not just negative ways, but also in the positive and beautiful and complicated ways.
Diagnosed with bipolar disorder at age 13, Diana Chao has since become a fierce and compassionate advocate for youth mental health. Now, at only 22 years old, she is the founder of Letters to Strangers, the world’s largest global youth for youth mental health organization.
At the time that I started Letters to Strangers, there was really no other organization like it. Organizations either focused mostly on adults or were run by adults for youth. We now have a generation that has experienced such a huge, unbelievable digital transformation of everything. It was so difficult to talk to adults about social media, cyberbullying, and body image. That youth-to-youth peer support structure, we were really at the beginning of that. I think anyone who had interest in something like that ended up finding us online, and that's how they joined.
Diana’s experience as a first generation Buyi Chinese American navigating an early-onset diagnosis informs and enriches her work– a renowned speaker and advocate, she is also a proud NAMI ambassador.
I hope my recovery story helps people to accept themselves. My story is a story of not only self-acceptance but self-celebration.
-Ky Quickbane
My lived experience with psychosis began when I ran out of money to go to school. All of that kind of came crashing down on me, because I couldn’t get financial aid anymore. I don’t think I necessarily had a big sense of self-direction and self power.
When the pandemic hit, I started doing the Allegheny County Warmline. As a warmline operator, the hardest part was not knowing what mental state the other person was in when you picked up the phone. We have to know how to ask the right questions. An invaluable question that I think needs to be added or recognized in the mental health system is, What do you need right now, at this moment?
Ky Quickbane is a twenty-eight-year-old queer trans man in Pittsburgh, PA. In an interview for NAMI’s upcoming book You Are Not Alone, Ky discusses his work as a warmline operator, his experiences living with a mental health condition, and how they overlap with his experience as a trans man. For Ky, a key part of recovery is self-acceptance and celebration.
Recovery for me, it’s a learning process. Every day I surprise myself, in that I learn something new about how my brain works. I learn new ways to not judge myself, because I am a beautiful human and couldn’t see that for a really long time. I think that everybody has some aspect of them that is worth celebrating and that only they can bring to the table. And I was afraid for so long, because I didn’t think that anybody would be able to look at me, and say, “You know kid, you got this, and you deserve to be here.”
My definition of recovery is getting to a place of peace with whatever mental health condition you’re living with. It doesn’t mean that those symptoms go away altogether, but you can manage it and still fulfill whatever your purpose is.
-Tera Carter
When I got diagnosed with bipolar disorder type I, I was thirty-nine years old. My psychiatrist is the one who told me about NAMI. He said, “They have support groups, they have education classes.” I was hungry for information about what was going on with me. I really feel like education empowers you when you’re living with a mental health condition. The more you know, the more power you get because you have a better understanding of what’s going on with you.
Tera Carter, a certified peer specialist living in Georgia, works as a second responder for the mobile crisis team in Atlanta. In an interview for NAMI’s upcoming You Are Not Alone, Tera shared about her work with the crisis team and how her own lived experience guides her advocacy.
When we go out, my role as a second responder is to communicate why we’re there, we’re with the mobile crisis team. The certified peer specialists are very well respected in Atlanta. I think that the clinicians and organizations and agencies really see what we bring to the table.
Because of my own experience, getting diagnosed late in life, I feel strongly about being able to help people anyway that I can, especially young people, to be able to understand what’s going on with them at an early age, so that they won’t have all the years of experience not being able to live a fully productive life because of an illness. I'm very passionate about it.
Tera also works as alumni coordinator at Skyland Trail, a nonprofit mental health treatment organization in Atlanta.
I was about twenty-five. I went through a solid five years of, I would call it hell, and then finally found the right meds, found the right doctor, but not in that order. Eventually, I was able to share my story.
-Nikki Rashes
I was dating someone for a short time, a med student who you would think would be educated in mental health. After he heard I had bipolar disorder, I got that phone call of, “Ooh, I don’t think I can deal with this.” And he walked away. I sent him an educational email, and then I got online and was just like, “I’ve made it to the other side. People need to know what this is like. People need to understand that there’s still life, that this isn’t a horrible sentence to misery by having a mental illness.” And so I came across NAMI. I came across In Our Own Voice and said, “I want to tell my story. I want people to hear how this really works.” Before I knew it, I was volunteering full-time with them.
Illinois-based Nikki Rashes currently serves as a Senior Manager for Programs, Digital Training and Delivery, at NAMI national. She’s also a grandmother and a stepmom. NAMI programming allowed Nikki to tell her story in a way that was liberating—after twelve years with NAMI, she continues to facilitate programs that help others as well as support her own continuous recovery journey.
Once I realized my purpose––which was to make a difference and give people hope, to let them see that this is the face of mental illness, this is the average person who is living with a mental health condition––it was easy giving presentations because it just felt like this is what I want to do. This is my mission.
I believe I finally understand my purpose. This is my purpose, to help other families.
-Monique Owens
When NAMI was introduced to me, I said, “Look, I’ll try anything if it’s going to help.” And it did. When my classmates told their stories, that was the first time I broke down and cried and realized that I wasn’t the only one going through it. At least now I have a name, I have an understanding. I hadn’t been educated yet. I just needed somebody who was willing to listen to me and make me feel like I’m not the only one feeling like I’m losing my mind. I really was feeling down and felt helpless. I was amazed at the strength in that room. I was amazed at how the instructors were very empathetic, very understanding. They allowed us to speak. I didn’t feel like we were rushed.
Monique Owens, a mother and grandmother living in Maryland, struggled for years to cope with her children’s behavioral challenges and mental health concerns. NAMI’s classes and support groups provided tools and a nurturing community that were instrumental in helping her find solutions. Now, Monique teaches those same classes and support groups as a way of paying it forward.
I went to class because I wanted to know what do I do? I went back and talked with my family and said, "Hey, I just attended this group, and I learned a lot.” I changed the way I talked with them, I changed the way I communicated. Now, I’ve taught NAMI’s Family-to-Family classes, and I’ve taught their Basics classes. I’m also a support group facilitator. It has been an amazing experience because I’m able to help other families.
For me, vulnerability is a recognition that you can be knocked down, and confidence in your ability to get back up.
-Pooja Mehta
I started telling my story on my own terms. The first time I told my story about anxiety and depression openly was an anonymous article in the school newspaper. I still have the clipping. I braced myself for the impact, for people lashing out, telling me this was bad or whatever. I just waited to see what the response was. And it was positive.
That inspired me to, with a group of other students, found the NAMI on campus at Duke, which to this day is the largest student organization on campus, because I saw a need. I realized that there's a lot of us.
For Pooja Mehta, vulnerability is a cornerstone of her recovery journey. A 27-year-old South Asian-American woman, Pooja is an active social media advocate and cofounder of NAMI on campus at Duke. Part of her mission is transparency:
I share very openly, because I really don't like this idea of social media being a highlight reel. I really don't like this idea of trying to portray life on Instagram, but really only showing the highlights. Life is not great all the time for anyone.
You're not alone. There's a lot of people in this struggle and it's unique but it's universal at the same time. Founding NAMI at Duke helped me become more accepting of my personal diagnoses and struggles. I started engaging in therapy. I started taking my medication willingly. I started doing things to help and support myself. And I started being able to function in a way I wanted to. I started transforming into this person who I liked. And so I kept doing it.
Everything that’s happened to me, I know it’s happened to someone else too.
-Cathy Guild
I began to see a therapist then, and that’s how I learned I can actually talk to someone and I'm not punished for it. I’m not told I’m crazy. They told me I wasn’t alone. Other people go through this. And then there was a plan. Who knew that there could be a plan? To actually help you so you can feel and get better. I thought that was amazing.
Boston-based mental health care worker and advocate Cathy Guild describes herself as a mother of three and mother figure to many others. In an interview for NAMI’s upcoming book, You Are Not Alone, Cathy opened up about mental health, her struggles with PTSD and addiction, motherhood, and some of the darker moments in her recovery.
Someone called DSS on me. They were going to take my child away, so I told her father and he took her and he sent her down to his family. I felt like a failure of a mother at the time. And then I thought about it, and I wasn’t being much of a mother anyways. I was not there for my children.
I went to therapy and I got through this thing. And then they said to me, “We’re going to see about you getting your children back.” I was floored. I couldn’t believe I could have my children back in my life. Now that I’ve got some recovery under my belt, it’s time to get my whole family together.
For Cathy, validation of her experience was a critical piece of the healing and she shares her story hoping it will be validating to others.
The most powerful way that I could share who NAMI was and what they were capable of doing was to share my story.
-Karen Ranus
Formerly the executive director of NAMI Central Texas, Austin-based Karen Ranus has spent years engaging with others through NAMI’s community of support groups and classes. Karen’s journey with NAMI started when her daughter was hospitalized after a mental health crisis with suicidality.
We didn’t have a clear understanding of what we were navigating, and suddenly, after three days the hospital sent my daughter home and claimed, “She’s not in crisis anymore.” But we brought her home and it still felt very much like a crisis to us. And in the midst of all this, as a mom, I was doing what lots of moms and dads do. I was trying to figure it all out. Nobody at the hospital said, “Hey, you should try NAMI.” And I’m calling the case manager after we’ve left the hospital, but there’s a limit to how much they’re able to do. And so, along the way in the midst of my searching, I discovered NAMI.
For Karen, storytelling is a nexus of community-building and healing—which is why NAMI’s peer-based programs became such an integral part of her mental health advocacy work.
I think it’s important to recognize that stigma manifests itself as shame for the families and individuals who experience it. It’s so much easier to feel compassion and empathy for other people– what I realized I was not extending that to myself. I’m now a big believer that storytelling is one of the most powerful ways that we break open the conversations, that we break through the shame.
