Book Review: “You Are Not Alone” Delivers Hope for Mental Health

If you are a person with a mental illness or one of the millions who care for someone who does, I recommend the first book from the National Alliance on Mental Illness (NAMI.) Dr. Ken Duckworth, NAMI’s medical director, wrote You Are Not Alone: The NAMI Guide to Navigating Mental Health, With Advice from Experts and Wisdom from Real People and Families.

Duckworth was inspired to become a psychiatrist because his father suffered from a mental illness. He wanted to help make a difference for others.

He includes the lived experiences of 130 interviewees throughout the book. Some participants were diagnosed with mental illness, while others cared for someone with a mental illness. What a gift to hear these stories and understand two things, you are not alone, and there is hope. These stories are worth the book’s price, but he also provides a toolkit of resources.

Duckworth divides the book into four parts:

• Mental health and mental health conditions
• The recovery journey: evidence from lived experience
• Family matters
• Best practices

You Are Not Alone Delivers Expert Advice and Tips from Lived Experiences

This book is jam-packed with resources. Duckworth includes evidence-based information interspersed with excerpts from lived experiences. These caught my attention:

• Advice on screening tools for mental illness.
• A description of the new mental health crisis hotline you can reach by pressing 988.
• One parent Duckworth interviewed told the story of how she got services for her child from the school system. The child’s school didn’t offer options, so she went to each school in her district and pretended to be shopping for a new home. She asked questions about how they would support her child. Then she returned to her child’s school and said, “This is what I want for my child.”
• A tip that surprised me was that if your insurance network doesn’t have a specialist you need, you can petition to go out of network at in-network rates.
• In addition to hotlines, you can also use ‘warmlines,’ which provide peer support.
• A discussion of substance use disorder.
• A Frequently Asked Questions chapter includes answers to commonly asked questions, such as “How do I know if my teen’s behavior is normal rebellion or something more problematic?”
• How to keep records that may be useful in advocating for yourself or a family member.
• Plans for wellness recovery, psychiatric advanced directives, and crisis plans.
• Critical legal issues for those with a diagnosis.
• Self-care for caregivers.
• The impact of culture and intersectionality on finding resources and support. For example, there is a shortage of child and adolescent providers, especially in rural and minority communities. This burdens all providers who struggle to meet the needs of various people. This means all providers must be culturally competent to understand each client’s issues and how best to tackle healing.

NAMI Programs and Resources

NAMI is the grassroots organization for mental health.

“NAMI started as a small group of families gathered around a kitchen table in 1979 and has blossomed into the nation’s leading voice on mental health. Today, we are an alliance of more than 600 local Affiliates and 49 State Organizations who work in your community to raise awareness and provide support and education that was not previously available to those in need.”

Although I have volunteered for NAMI and even presented a session about mental health activism at a convention, this book taught me about their extensive programs. No wonder MacKenzie Scott gave NAMI $30 million in 2022. They are doing excellent work with a mostly volunteer base.

The NAMI Helpline

NAMI Flagship Programs

1. Family-to-Family is for family, significant others and friends of people with mental health conditions.
2. Family & Friends helps people understand how to support a loved one with a mental health diagnosis.
3. In Our Voice features the lived experience of those with a mental health condition and is designed to educate and change attitudes.
4. Connection Recovery Support Group is for adults who seek a community of peers.
5. Family Support Group is a peer-led group for those with a loved one experiencing mental illness.
6. Peer-to-Peer is for adults with mental health conditions who want to understand themselves and their recovery better.
7. Hearts+Minds connects physical and mental health for those with a diagnosis.

NAMI Specialty Programs

1. Homefront is for military service members, veterans, and their families.
2. Provider introduces mental health professionals to the lived experiences of people with a diagnosis and their families.
3. Smarts for Advocacy helps people with mental illness and their friends and family transform their passion and lived experience into skillful grassroots advocacy.
4. Ending the Silence helps middle and high schoolers learn about the warning signs of mental health conditions.
5. Basics is for parents and caregivers of children and adolescents experiencing problematic behaviors, with or without a diagnosis. Includes how to navigate state and school systems.
6. Faith Net: helps people within faith organizations understand the help their parishioners may need in addition to praying.
7. Sharing Hope is for people in Black communities to facilitate help and support.
8. Compartiendo Esperanza: Mental Wellness in the Latinx Community is for people in LatinX communities to facilitate help and support.
9. Sharing Your Story with Law Enforcement helps people share their lived experiences with mental illness with a law enforcement audience.

Find Your Local NAMI affiliate.

Mental Health Activism

Since I love helping people find joy and impact in activism, I was pleasantly surprised at the number of You Are Not Alone interviewees who (1) used advocacy to educate and as one component of their healing and (2) did so creatively.

It makes sense. Those with a diagnosis and caregivers have learned to advocate for themselves to get what they need. And they hope to make the path to resources easier for others.

There are many issues to tackle for our society to support mental health fully, and we need everyone’s help.

Traditional Activism

NAMI’s advocacy priorities are lobbying, fundraising, and education for mental health issues, and some of Duckworth’s You Are Not Alone interviewees used these methods:

• Pooja advocates on Capitol Hill for mental health issues.
• Mike presents NAMI’s Ending the Silence suicide prevention program in his area schools.
• High school student Kaitlyn lobbied for Colorado insurance companies to cover one free mental health and wellness checkup yearly.
• Haley, who was diagnosed with borderline personality disorder and who found solace in drumming, advocates through an organization called Emotions Matter.

But in my book with mental health activist Trish Lockard, Make a Difference With Mental Health Activism, we encourage potential activists who don’t find these methods possible or enjoyable to find the perfect activism opportunity through activism that matches their talents.

Creative Activism

• Josh plays music in the ME2 Orchestra, which is led by a conductor with a diagnosis. The short film Orchestrating Change is about the creation of ME2.
• Emma founded the Depressed Bake Shop to bring people together in community to bake and raise funds for mental health. Many participants found baking itself therapeutic.
• Diana found journaling by writing letters to an imaginary stranger to be an effective tool and founded the program Letters to Strangers.
• Miana experienced mental health issues and college and had trouble finding help. She created a peer support group at her college. Miana is profiled in Make a Difference with Mental Health Activism.
• Kenya wrote a book of poetry called Word Plays Series 1 Winter: Emotional Spasms, inspired by living with bipolar disorder.
• Mary Ellen created the researched-based Wellness Recovery Action Plan. WRAP is a toolkit for finding tools, creating a plan, anticipating obstacles, and getting support in a crisis.
• Shirley created the Remembrance Tree event that helps survivors honor the memory of those lost to suicide.
• Karyl created quilts to honor those lost to suicide. Read more about her story in Suicide Prevention at the Heart of Activist’s Memorial Efforts.
• Nick believes those diagnosed are superheroes. He created the persona NAMI Man and gives presentations to kids, saying, “I crush the stigma.” Then he takes his mask off and encourages them to talk.

You Are Not Alone

Duckworth interviewed my co-author, mental health activist Trish Lockard about her lived experiences for You Are Not Alone. The family history section includes her story.

“Ken showed great generosity when he accepted my request to write an afterword for Make a Difference with Mental Health Activism. At that time, he asked me if I would agree to be interviewed for a book he was beginning to write, to be titled You Are Not Alone. I was honored and thrilled to be asked to be part of such an important book. Ken put countless hours into You Are Not Alone, and it shows! This book is magnificent.” Trish Lockard

Well said.