Living Recovery provides critical information for practitioners and educators in mental health services about the self-described needs of young people diagnosed with mental illness. It portrays the stages of living with mental illness through the recovery model ELARâ?'emergence, loss, adaptation, and recovery. The author interviewed youth aged sixteen to twenty-seven in Canada, Australia, and the US, and her book relates the price of the stigma surrounding mental illness, especially for young people who are already challenged with the developmental tasks of adolescence. The text examines the youth-described â??social illnessâ? of stigma and the resulting self-marginalization they say is necessary to survive stigma and social isolation. When youth feel isolated, ignored, or shunned, the resulting shame and stress they may feel has the potential to exacerbate such illnesses as obsessive compulsive disorder, psychosis, anxiety, and/or various mood disorders.The findings from this research anticipate and identify interventions that are useful for youth with mental illness. If programs and systems of care take into account youth stories such as those presented here, interventions will become more meaningful and more likely to address problems related to social and emotional distresses.In charting journeys through the emergence of illness, to loss, adaptation, and recovery, the book reports on how mental illness disrupted these youthsâ?? lives on every level, especially in the transition from late adolescence to young adulthood. But youth also describe ways in which they adapted and recovered and how they came to â??own the illnessâ? with a greater sense of agency and self-direction.
Dr. JoAnn Leavey is a registered psychologist and registered nurse, writer, poet, musician, pilot, and life enthusiast who has lived and worked in Vancouver, London, and Toronto. She has spoken in over eleven countries, motivating and teaching people how to help youth and others living with mental health problems. She publishes regularly in Academy Forum, a journal of The American Academy of Psychoanalysis and Dynamic Psychiatry. In 2015 Dr. Leavey received the Governor General's Caring Canadian Award for her local and international medical, public and mental health, and environmental volunteer work.
Framing the Context for Youth
Living with Mental Illness
ESPECIALLY IN QUALITATIVE RESEARCH, it is important and necessary for researchers to be located in the research to ensure that any bias is uncovered and evident. The following information describes that location. I have worked in the mental health field for over fifteen years as a clinician, researcher, administrator, educator, and policy-maker. I have always been genuinely interested in people's mental and medical health, social stories, and recovery. When working with patients (especially with young people ages 16 to 24), over time I came to see the importance of early intervention. It was a key component in avoiding or at least mitigating some of the social stigma and social losses caused by having a chronic mental health condition. In addition, early intervention helped youth avoid some of the physical and emotional effects of their condition.
Inspired by these observations, I decided to start researching early intervention and stigma in the area of first episode psychosis. The information I gathered underscored my clinical observation that early intervention resulted in better outcomes for individuals, especially for young people experiencing mental health problems. What I did not initially see was a great deal of research focusing on the voices of the youth themselves. Since then, however, there has been an explosion of research focusing on early intervention, including a strong emphasis on young people. Yet there is still a gap in terms of what youth themselves have to say about their experiences with mental illness (Caine & Boydell, 2010).
This book is part of a growing body of research literature that supports reducing stigma, listening to individuals who live with mental health problems as experts in their experiences, and focusing on best practices to help them with recovery. This book focuses on the experiences of youth and provides a way of understanding mental illness/health in terms of the categories of ELAR: Emergence of a problem, Loss of self and social standing, Adaptation to a new understanding of self and other, and Recovery from a mental illness process.
In conducting this research, it was my privilege to hear fifty-three young people from three countries describe to me their journeys with mental illness. Together we explored what it was like living with a mental health problem; their subsequent adjustment problems due to the social stigma associated with mental illness; how they became alienated or self-marginalized because of the symptoms of the illness; and the social consequences they experienced because of the stigma. The youth were excited to have the opportunity to share their stories and express what was important to them about their experiences. They were firmly committed to telling their stories so that newly diagnosed youth or those beginning to feel "different" from the norm would have a chance to know that others feel the same way. The youth also wanted to encourage a more generous understanding of mental illness, one that includes less judgment and stigma. They opened their hearts so that others would open their minds to reduce negative labels and stigma. It is with this aim that I share their stories.
I would like to start by explaining my interest in young people experiencing mental health problems. As a result of several years of research, clinical work, advocacy, systems reviews, systems planning, evaluation, and discussion on the topic of youth and mental illness/wellness, I was impressed by the positive contributions that young people made to their own adaptation and recovery processes. I was particularly interested in their resilience in the face of being labelled with a mental health problem. For instance, these youth still managed to contribute to society, even though they felt stigmatized and initially frightened by the process of receiving a diagnosis and intervention. Further, I was impressed by their complete willingness to enhance our understanding by bravely sharing their stories. Their goal was to help other youth who might not be receiving the support they needed, or who were experiencing their first episode or emergence of a mental health problem and did not know whom to turn to. Finally, these young people were concerned about the future and were steadfastly working toward both personal and societal/community goals. All of these factors attracted my interest and curiosity.
In this book, you will learn how youth experience the emergence of their mental illness, the losses they experience, and how they adapt and recover. This information has the potential to open dialogue between youth, care providers, administrators, and policy-makers with the goal of developing a system of care that is more youth-centred. When mental health care programs and services become more relevant, timely, and meaningful, they then become more effective in the recovery process for young people.
So open your minds and your hearts to what is being presented. Use this information to help young people-or anyone you may encounter who is experiencing a mental health problem-to feel more accepted in society. Give them a chance to recover from the real problem, not the subsequent social marginalization they experience from being labelled as "different." It will take courage to stand up to old norms and advocate for young people with mental health problems. Reading this book will help convince you of the tremendous courage, strength, and insights these youth have regarding their own experiences, along with their desire to share in order to help other youth. This book is about their journeys, their experiences, and their offer to teach us what they know; their ultimate hope is that we will listen and that others will suffer less.
Terms Used in This Book
THE WORLD HEALTH ORGANIZATION (WHO) defines mental health as "a state of well-being in which the individual realises his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community" (2001, p. 1). The Public Health Agency of Canada also has a broad definition: "Mental health is the capacity of each and all of us to feel, think and act in ways that enhance our ability to enjoy life and deal with the challenges we face. It is a positive sense of emotional and spiritual well-being that respects the importance of culture, equity, social justice, interconnections and personal dignity" (2006, p. 2). I use the terms mental health problem, mental illness, and mental disorder interchangeably due to the inconsistent definitions and application of the terms in the available literature, among mental health workers, and by the participants themselves.
The participants in this research self-identified a wide range of conditions that they labelled as mental illness, including depression, psychosis, bipolar disorder, schizophrenia, anxiety disorder, post-traumatic stress syndrome, obsessive-compulsive disorder, personality disorders, eating disorders, learning disabilities, delusional disorder, mood disorder, generalized anxiety disorder, and Asperger syndrome. For the purposes of this book, all of these conditions are considered to be a mental illness.
Finally, I use the terms youth, young people, transition-aged youth, and transitional youth interchangeably. Further, the terms transitional youth and transition-aged youth refer to youth in transition through the developmental stages from adolescence to young adulthood.
Who Is This Book For?
A DIAGNOSIS OF MENTAL ILLNESS can be incorporated into daily living by considering mental illness as "just" another problem rather than something to be feared or stigmatized. The information provided in this book will help youth, parents, health care providers, policy-makers, governments, and service systems to understand mental illness in a different way. Appropriate and effective early intervention (in particular, medication) to help stabilize the illness so that youth can concentrate on reclaiming their social and identity losses is an important first step. Staying with their families when possible (as opposed to institutionalization) may help youth stabilize during their recovery and rehabilitation. Health care providers, policy-makers, governments, and service systems need to begin to address service delivery needs based in part on the psychosocial development of youth. Service provision needs to be developmentally focused so that youth can meet their life cycle needs; this means providing them with the opportunity to rehabilitate, to get work-related training and education, and to access organized support. Such supports include peer-related activities, groups, and programs. These peer groups need to include advocacy; they also need to educate individuals and the community and facilitate the recovery and reintegration of youth.
The identified gaps in service systems for youth with mental health problems need attention, but without formal peer support services for youth, services are less effective. When formal psychosocial supports and services with formalized peer components are available, more potential exists for youth to use these programs as an avenue of access to formal treatment interventions and as the basis for maintaining ongoing recovery.
Redefining Our Understanding of Mental "Illness"
OUR UNDERSTANDING of what mental illness means to youth can be expressed as follows:
Illness is a process that helps us understand the...