Whether you’ve just been diagnosed with schizophrenia or you’ve lived with your condition a long time, there’s value in learning more about the disease. These resources can help you navigate your particular symptoms and challenges and find inspiration, hope, and knowledge that you can and will get better -- and stay that way.
“There’s a great TED Talk by a woman named Eleanor Longden, where she talks about her experiences as a voice hearer,” says Sarah Keedy, PhD, associate professor of psychiatry and behavioral neuroscience at the University of Chicago Medical Center. In her 15-minute talk, Longden, who was diagnosed with schizophrenia as a college student, tells how she learned to let the voices she heard help her heal.
Corinne Cather, PhD, director of the Center of Excellence for Psychosocial and Systemic Research at Massachusetts General Hospital, recommends Kristin Neff’s video The Three Components of Self-Compassion. “If you take care of yourself on a day-to-day basis, everything goes better,” Cather says. Not judging and isolating yourself, and paying careful attention to what you are experiencing with your illness, are key to self-compassion.
Cather and her colleagues have also written a book, Facing Serious Mental Illness: A Guide for Patients and Families, that will be out this year as part of Massachusetts General Hospital Psychiatry Academy’s patient book series.
Keedy likes to direct her patients and their families to the National Alliance on Mental Illness (NAMI) website. The “Your Journey” tab on this advocacy site has advice on topics such as finding mental health professionals; relationships, faith, and spirituality; and finding housing and work. The numerous resources on NAMI’s site include the guide Navigating a Mental Health Crisis, which has tear-out pages to write down important information about your illness to carry with you or share with family and friends.
Other resources that may help:
There are a number of fiction, nonfiction, and self-help books about living with schizophrenia.
- Two books Cather recommends, Overcoming Paranoid & Suspicious Thoughts and Overcoming Distressing Voices, give insight into how cognitive behavioral techniques can help control these most commonly recognized symptoms.
- The Clinician’s Guide to CBT Using Mind Over Mood, also recommended by Cather, gives step-by-step instructions on using cognitive behavioral therapy to target the mood swings that often come with schizophrenia.
- Although some of the research information in Me, Myself, and Them: A Firsthand Account of One Young Person’s Experience with Schizophrenia may be dated (it was published in 2007), it’s available for free download through the Annenberg Public Policy Center in both English and Spanish.
- The seventh edition of Surviving Schizophrenia: A Family Manual updates this classic text, known for its clear language and look at the illness from the inside and the outside. It gives a complete overview of treatment, research, and living with schizophrenia.
- OnTrackNY, a resource primarily for young adults and their families, has an Employment Resource Book that helps people of any age with schizophrenia prepare for work, find work, and succeed in a job.
Some advocacy and information sites dedicated to mental health feature videos by people living with schizophrenia.
- RAISE (Recovery after an Initial Schizophrenia Episode) is a mental health initiative of the National Institute of Mental Health with videos on its patients and families resources page.
- The Center for Practice Innovations at Columbia University has videos on its Consumer and Family Portal featuring first-person accounts from people like Sebastian, a college student, and Melissa, who talks about managing work and her illness.
- What Is Schizophrenia? is an animated, narrated TED Talk video that explains what is known about schizophrenia’s causes, symptoms, and treatments.
- Compassion for Voices: A Tale of Courage and Hope from the Center for Mindfulness program of the same name is another animated film that takes a caring approach to helping people with schizophrenia live with the voices they hear.
- WebMD features a first-person account in Voices: Living with Schizophrenia and related videos about the illness in a playlist on the same page.
- Massachusetts General Hospital has several years’ worth of videos documenting its Schizophrenia Education Day, which presents new research to patients and their families.
Blogs can range from first-person accounts to message boards with answers from and for those living with schizophrenia.
- The NAMI Blog of the National Alliance on Mental Illness filters blog posts by category including schizophrenia, schizoaffective disorder, and schizophrenia spectrum and other psychotic illnesses.
- Time to Change, a website based in the United Kingdom, has numerous blog posts dedicated to living with schizophrenia and dispelling myths about the disease. Blog writers talk openly about their symptoms, treatments, and how they cope with their illness.
- SANE Australia works to dispel the stigma around mental illness, including schizophrenia, one of its most misunderstood conditions. The SANE Blog includes first-person accounts such as “My Life with Schizophrenia: I’m Here to Do My Best and Make the Most of My Life.”