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Excerpts from Living Recovery: Youth Speak Out on “Owning” Mental Illness by JoAnn Elizabeth Leavey

From the Acknowledgements

I own the illness; the illness does not own me.

From Chapter 1

Alex: I just feel that I’m sad that I have a mental illness, because well, for one thing I’m just sad because I don’t want something bad. I see mental illness as bad, a bad omen, and especially since society used mental illness as something crazy or disturbed people have. Like they have those TV movies where, you know, a person is compulsively doing this and they’re thinking about spiders and spiders crawl on them. They make it so drastic, these illnesses, that people see it just as bad.

From Chapter 4

Carrie: Just don’t look at anything bad, just keep on going, keep your high hopes and just keep on going and just don’t look around people around you … or don’t look at them or their habits, because—just do what you think you have to do and don’t get caught up. [pause] Don’t think of anything negative too much. Just keep on going with the good—because negative affects your thinking, if you think negative you’re going to get more negative, more negative.

From Chapter 1

In conducting this research, it was my privilege to hear fifty-three young people from three countries describe 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.

From Chapter 3

Generally, I asked all participants questions about the relationship between mental illness and their lives. Responses sometimes differed between females and males, and not surprisingly, similarities emerged in same-sex responses. In general, females were more often concerned about being judged by peers and friends and losing social standing, whereas males were more concerned with family status. Both groups, however, seemed equally concerned with losing scholastic footing and vocational dreams and ability, although more females were currently working and concerned with future employment than males. Interestingly, the essence of what participants had to say was concordant despite the cultural diversity of the sample group. In fact, their norms, values, and interpretations of the social meaning of mental illness were similar, regardless of their gender or cultural background.

From Chapter 5

A Developing Theory

The meaning of mental illness to youth, the concept of the “interrupted self,” or the “mentally ill self,” as evidenced by the data in this study, can be stated as follows:

Illness considered as process helps us understand the experience of youth being diagnosed with a mental illness. We can view this process through a set of stages—emergence, loss, adaptation, and recovery—that youth move through in a dynamic manner at different times during their illness. Understanding the onset of mental illness in young people as a process is an important means by which to consider how youth adapt and change in relation to their internal and external circumstances of biological and social changes.

Overall, youth with mental illness experience their social world as a place where they are labelled and stigmatized. Youth with mental illness are required to negotiate the world through mental illness, which is present in all aspects of their internal physiological and external social experiences. The social and biological reality of mental illness creates the meaning of their worlds; that meaning then defines their internal and external environments. Therefore, what they experience externally has the potential to be expressed internally through a developmental disruption. Youth experience the effects of the social construction of mental illness and subsequently may experience the reality of an “interrupted-self.” When mental illness leads to an interrupted-self, there are negative identity and developmental implications for social maturation and development. This social reality is further complicated by youth having no control over the biological facts of acquiring the illness. Therefore, initially youth are victim to their illness both biologically and socially and must learn how to cope with this reality state, or way of being, and recover.