SELF: Sharing Experience Lived Firsthand

Service users and survivors who work in a behavioral health settings are faced with important questions about whether or not to share their lived experience and when. We may ask ourselves: Am I ready? What about the risks and politics of disclosure? How do I address an associated expectation or barrier, or deal with the possibility of discrimination? What kind of support is available to me in the process?

These questions don’t come with easy answers. Decisions regarding disclosure in the workplace are often informed by individual circumstance such as social or financial resources, local culture, the need for accommodations, our relationship to the experience, and the degree of risk – real or anticipated – associated with sharing our particular story.

While support is key, its availability and messages are as varied as our roles – e.g. lived experience with mental health service use is a qualification for peer specialists, while doctors and nurses are often advised never to share such information, as if it’s incompatible with the “professional” role.

But these divides can perpetuate harmful stereotypes, stressful cultures of secrecy, feelings of isolation, and inauthentic, hierarchical relationships in service delivery. Motivated to explore these issues and more, I’m pleased to announce Sharing Experience Lived Firsthand (SELF). Sponsored by the Lived Experience Research Network (LERN), Directed by Casadi Marino, and with staff collaborators Hector Zayas, Beckie Child, and myself, Vanessa, this 2014 BRSS TACS grant-funded project will look at first-person accounts of disclosure with distress and mental health service use in behavioral health settings. Our goal is to make diverse perspectives available for consultation and to empower community members by offering support, information and options.

Here’s Where We Need You!

If you’ve made decisions about whether or not to share your lived experience while working in behavioral health settings, your input is vital to the creation of user/survivor informed and generated resources – webinar, pamphlets and guidebook. These will be made available to folks across the country who are considering the risks and benefits of “coming out,” wondering if it’s right for them or where to begin.

To Share your Experience Lived Firsthand, stay tuned in the coming weeks for web-based surveys and project updates – or contact: Vanessa: [email protected];  Khaki: [email protected]; or Beckie: [email protected] Until then, we hope you’ll enjoy “meeting” Project Director Khaki (Oregon) and staff collaborator Vanessa (Massachusetts) through our SELF interviews below:

How Did You End up in the Mental Health System?

Vanessa: At 15, I suddenly felt completely alien, not in my body. I had some far out experiences, altered perceptions, and I was terrified. I turned to running and dieting to manage it all, which, in an sense, were acceptable ways for women in my community to cope.  But this quickly got out of hand. I lost too much weight and drifted from friends because I didn’t think they’d understand this part of me. I mean, I didn’t understand, so how could I begin to explain?

I kept quiet and transferred schools, hoping to live anonymously to get through whatever this was and back to some narrow idea of normal. But that didn’t solve anything. I missed my friends. People worried. I stopped doing what I loved – dance, running and field hockey. My parents took me to a doctor and I told her as much as I could, which was that I was afraid something was really, really broken about me.

Then came the family history. The doctor discovered both my grandmother and mother had been in a psychiatric hospital, which I think answered her questions. I was told the broken-brain story of illness, which led to more distress, more isolation, and 17 years on multiple medications that for me didn’t help and almost cost me my life.

But looking back, I was just a kid, frightened to realize something was different about me, that I was attracted to men and women – that I was bisexual – and reliant on a family that  believed same-sex relationships are wrong. And at that time home just wasn’t always an emotionally or physically safe place. My parents were loving in ways, but absolutely going through their own very hard times. But all this took me years to understand. At 15, I was just caught, panicked, feeling like I had to choose between social and family support and being honest about what was happening. So I erased parts myself. It’s a formula to drive anyone mad. But, there’s no DSM code for that.

What Does Disclosure Mean to You?

Vanessa: Disclosure has felt more like a process of becoming than a single conversation. For me it’s been about shedding the shame that comes with being told there’s something wrong with you, which, trauma and psychiatric labels aside, we’ve all been told by virtue of exposure to endless cultural messages and commercial activity trying to sell us a better version of ourselves.

Of course the hiding or “passing” some part of ourself is a pretty universal phenomenon. We all do it to some extent, disowning parts then hanging out other parts for the whole world to see. But the difference for people who suffer in extreme ways, or who are different in ways that people can’t or are afraid to connect with, is that that experience is by definition the thing we’re expected to hide. Maybe not sharing these parts makes sense as a kind of strategy since discrimination is real and no one wants to be hurt or misunderstood. It may also be true that someone’s naturally a private person, or they don’t yet have the language with which to talk about it. For me it was all those things. But my silence came to embody the awful message that this really big part of my life wasn’t valuable, that it was something to be kept quiet, overcome and left behind. And my experiences only became more meaningful overtime, to the point of guiding my spiritual practice, relationship and career choices. Had I not been a patient for almost 20 years, I don’t think I’d have a sense that anything even needs to change. That message just isn’t in our textbooks.

What Were Your Concerns About Disclosure?

Vanessa: For a while it was fear of discrimination. But I quickly realized the discomfort was more layered than that. I’m a nurse and psychiatric nurse practitioner student. I’m in the medical model of understanding and supporting distress, which was really harmful to me and has been to so many people. Yet as a student learning to prescribe psychiatric drugs, I haven’t yet seen a single algorithm that accommodates this outcome. We have a long way to go in terms of research, practice, and really addressing the social determinants of mental health. In the meantime –  stacks of critical research aside –  just being me and honest about the last 20 years of my life necessarily challenges the framework in which I study. On stressful days I start to imagine my presence is breaking some kind of sterile, intellectual field. But really, that wouldn’t be a bad thing.

How Do You Carry Your Experience With You Into Your Classrooms and Clinical Settings?

Vanessa: I haven’t yet talked about my experience in the classroom or in clinical settings. It hasn’t felt like the time – large lecture halls, tightly scheduled lesson plans, or working on a medical unit, all while keeping my head above water – we’re learning six years of material in three years. But in papers and presentations I’ve introduced alternate frameworks and critical narratives that, for example, suggest medications can create many more problems than they help to solve. I first disclosed at school in a paper for a pharmacology class in which I discussed my life’s trajectory as patient from ages 15 to 33. I talked about my reaction to Prozac at 15 –  before the FDA black box warning – and the misdiagnosis of that reaction. I got a personal email from my professor who was really horrified, but also appreciative, considering designing a unit on critical perspectives and risk analysis. It was nice introduction to putting myself out there because, really, depending on where you are it can be nerve-wracking in the beginning.

Casadi “Khaki” Marino, LCISW

Would You Review Your Mental Health History?

Khaki: Mood disorders, addiction, and suicide are found on both sides of my family. My father was a survivor of neglect and abuse, developed substance addiction and bipolar disorder, physically abused my mother and brother, and physically and sexually abused me. He required that my crib be kept in the basement so that he wouldn’t be disturbed by my crying. I was left alone for extended periods of time and became a very moody child who could not sleep well. I plotted suicide in the first grade after gathering a jar of berries that I had been told were poisonous. I kept the jar hidden under my bed. Knowing that I had an option out allowed me to choose to stay. Fortunately, I had supportive teachers and kind neighbors. My grandmother sent me to church and faith became another source of support and meaning.

I began experiencing voices and visions at age seventeen. At first the experiences were by turns distracting, encouraging, and even entertaining, but by age eighteen I was hearing voices that told me that I was a bad person and should be dead.   I dropped out of college, lost my job and apartment, came to the attention of authorities due to my distressed behavior, and again plotted my demise. I was living in the San Francisco Bay area, and thought of jumping off the Golden Gate Bridge. While staring down from the bridge at the water, I became attuned with the singing of the water and heard a voice say, “I do not want you. You’re a lovely person. Don’t do this.” I listened and walked away. I later returned to college although I struggled with mood changes, other extreme states of consciousness, and marked shyness. I sought psychotherapy through student services and engaged in individual therapy off and on for years. My therapist was a Jungian practitioner who had an appreciation for the effects of trauma and the meaning to be found in the metaphors of odd perceptions and beliefs. I became a therapist myself, worked in community mental health and consumer advocacy for over fifteen years, and am currently pursuing a PhD in social work. My personal experiences with madness have informed my clinical, activist, and academic work.

Why is This Project Important to You?

Khaki: I have openly disclosed my history of madness since entering the field of mental health. I never considered doing otherwise. My experiential knowledge base coupled with professional training has contributed to my competency. Hiding such significant, relevant experiences instead of actively valuing them would have been a shame based decision on my part. I could not have been fully present in my occupation if I had kept my recovery identity to myself. I would have felt internally splintered and unbalanced. Instead, my relationships have featured authenticity. I believe I have influenced others to hold hope for those experiencing mental and emotional distress and to have faith in recovery. If I could get better, most anybody can.

However, disclosure has exposed me to ridicule and hostility and resulted in the loss of job offers and collegial relationships. I have long been told that I should never have entered the field. My integrity has been worth the cost. I am a stronger person for my disclosures. Disclosure is an individual choice with significant personal and professional consequences. I would never want to be responsible for the choice another person makes. I have immense respect for my colleagues who keep their mental health histories to themselves. Such histories belong to the individuals. I cannot shape another person’s life. Disclosure may be the most influential action someone in the field of mental health services and research could take. Disclosure speaks to pride. I would like to see more information on best practices available for those who may be considering disclosure. It is a choice to weigh with much serious consideration. I am looking forward to talking with others about their experiences with disclosure.