Sunday, January 1, 2012

Becoming the "Good Patient"

During the fourteen years in which I used mental health services, I worked with countless psychiatrists, psychologists, social workers, and mental health workers, sometimes for days, sometimes for years. By the time I turned twenty-seven, with nearly half my life spent in therapy, I was confident of little else but my status as a “patient”. This identity had become one of the only constants in my life, and despite its dark nature, it evolved into something familiar, reliable, and predictable. As I became more and more comfortable in my discomfort, I gently slipped into a routine of continuous, automatic acquiescence to my treaters, forgetting that I had a voice.

When I stepped foot on the grounds of the oldest psychiatric hospital in the country in January of my freshman year in college, I was desperate enough to become willing to see a psychiatrist. I didn’t question whether or not I would be well cared for; these were the best psychiatrists in the country, after all! I was sure that I would walk away from this hospital healed and whole at some point in the future. I wish I could say I remember when this mindset dissolved, whether in an instant as the result of a particular conversation with my psychiatrist, or over a more gradual period of time. I can only say that by early spring of the same year, I had already forgotten that just a few months earlier I had held enough hope and faith in myself to believe that seeing a psychiatrist would be but a temporary stage in my life.

When I finally accepted my psychiatric diagnosis that freshman winter after fighting it for four years, I at once surrendered and ceased to ask questions about the validity of my diagnosis, the medication regimen I was immediately put on, or any treatment alternatives. This absolute acceptance of who I was— of who I must be, because I was being told this by a medical doctor— seeped into the foundation upon which I came to understand myself in the nine years to follow. I no longer believed that it was possible to evolve beyond existence as a chronic patient, and, worse than that, I forgot that it was even an option.

As a result, I unknowingly shifted my priorities away from the very reason I turned to psychiatry in the first place— to figure out what I needed to get my life back into balance again so that I would no longer need mental health treatment— and towards the task of becoming a ‘good patient’ in the eyes of the mental health professionals treating me. In essence, it became my vocation.

What I see in hindsight is that without the light of recovery at the end of my tunnel during those years, I experienced something akin to Stockholm syndrome. By conceding that I was bipolar and would be on bipolar medications for the rest of my life, I squelched the belief that maybe, one day, I could once again lead the balanced, stable, and healthy life that I’d had as a preadolescent girl. The high-achieving standards I’d once applied to school and sports were ripped out of their foundations and replanted in the soil of this new mental health world in which I found myself living. As if a wave of amnesia had swept over me, I quickly forgot that I was anything more than my diagnosis— it was as though I said to myself, “Well, Laura, since you’re going to be bipolar for the rest of your life, you might as well become good at it!”

This counterintuitive phenomenon occurs regularly in the mental health system. I say this with confidence because I’ve seen it time and time again, not only during my time spent both as an inpatient on locked wards and an outpatient in intensive outpatient programs, partial hospital programs, and group therapy, but also in my current role as a Peer Specialist working in the mental health system. It seems logical to assume that the most basic principle of mental health treatment should be to keep the wellbeing of the person receiving services front and center in all decision-making. It seems logical that this person’s voice should remain the most important one in the room, and that he or she knows better than anyone about what may be helping or hurting progress. It seems logical that the point of psychotherapy should be to access the root of a person’s emotional distress to resolve it and regain stability, rather than just focus on ‘treating the symptoms’— in essence, digging to the root of a weed to extricate it, rather than repetitively mowing away what’s visible at surface level only to have more grow right back.

However logical these points may seem, the principle of person-centered treatment can easily be turned on its head, with the main focus shifting away from the welfare of the people receiving services and often to the interests of the mental health professionals treating them. Although I believe there are many reasons why this happens, I have picked one to discuss here, as it stands out as the most glaringly obvious to me as I’ve made sense of my own experiences: the inherent power dynamic between the mental health “professional” and the mental health “patient”.

It was easy for me to believe that a doctor who had spent at least eight years training to become a mental health ‘expert’ knew more about me than I did, myself, during the time I spent in therapy. No matter how much I was assured that I was in a ‘therapeutic alliance’ complete with shared decision-making and mutuality, I felt convinced that the answers to my emotional struggles must lie in the realm of medical science, accessible only to the select few who had gained admission to MD and PhD programs, because I hadn’t been able to resolve them on my own. As a result, I surrendered my personal agency and almost always deferred to the countless ‘experts’ that sat across from me— who was I to think I could question what they were telling me about myself? They had science on their side, and I felt like I had no business making sense of a life I’d let slip so very much out of my grasp.

Because I no longer had the confidence that comes with a belief in self-determination, the things that once filled me with pride and purpose— academic passion, athletic performance, friendships, and career aspirations— fell apart one by one as my emotional instability intensified, leaving a glaring void once occupied by self-worth. I was left with a sense of urgency to find something, anything, to restore that feeling of competency I’d once had in those areas of my life, and becoming “good” at being a patient became the easiest, most logical replacement. It allowed me to feel like I was striving towards something, like I wasn’t just an aimless being drifting about in a dysfunctional life, but rather a person with a purpose and a mission.

I sought validation from my treaters for this newfound competency, and felt a sense of satisfaction whenever I saw my psychiatrist’s head nod at something I’d say, or I’d hear “I think we’re making good progress here”, regardless of whether or not I understood why that conclusion had been made. My answer to questions became the answer I thought my treater wanted me to give. I made sure that my level of eye contact and active engagement in conversation were enough to suggest a high level of insight and awareness, from what I’d picked up by reading psychiatrists’ clinical notes while working as a research assistant recruiting subjects for studies. I quickly became fluent in the language of the Diagnostic and Statistical Manual, learning how to self-diagnosis when I was becoming ‘manic’ (pressured speech, racing thoughts, impulsivity, grandiosity, etc.) or ‘depressed’ (flattened affect, lack of motivation, lack of concentration, feelings of hopelessness, apathy, lethargy, etc.), and being sure to keep my psychiatrist up-to-speed when such episodes occurred.

Essentially, I learned how to switch my gears into autopilot mode, ‘do the drill’ in therapy appointments, and detach from the deep parts of myself that were, I know today, the true causes of my emotional distress— those invisible roots hidden far beneath my surface, with weeds that continued to spread no matter how often they were clipped. I left each appointment feeling no different than when I arrived, and forgot that therapy was meant to be about growth, healing, and progress. The experience fast became a broken record for me, the same lyrics of the same stuck song skipping over and over again.

I saw these patterns around me when I was in treatment, and I watch them repeat themselves today in my capacity as a Peer Specialist. I often hear, “Well, my doctor thinks this medication is helping me, so I guess I should keep taking it”, or, “My occupational therapist thinks the goal I set for myself is too high and that I should lower it”. Sometimes, it’s “I’m having a hard time sleeping at night because I can’t stop thinking about my parents’ divorce, but I know it’s because I’m manic”, or “I’m so borderline! I get my feelings hurt so easily!” Script after script is read for the role of ‘good patient’, and no one stops to ask about the validity of the content, or who even wrote it.

In one of my Intensive Outpatient Programs, we diligently monitored our moods and wrote ‘chain analyses’ of our “bad behaviors” to be turned into our therapists at the end of each session, concerned that we’d be chided for tardiness or lack of detail. The more skilled we became at the Dialectical Behavioral Therapy (DBT) modules (“Interpersonal Effectiveness is DEAR MAN! Describe! Express! Assert! Reinforce! stay Mindful! Appear confident! Negotiate!”), the more we were convinced we could succeed in conversations with people out there in the “real world”, beyond the gates of the hospital at which we spent five to seven hours a day, five days a week. We became convinced we couldn’t handle life on life’s terms without the knowledge we were given by our treaters. Speaking for myself, I came to believe that although I had my own body, my ‘treatment team’ was my heartbeat, and without complete reliance on them, I couldn’t survive.

When I found liberation in my own mental health recovery and gained the confidence required to shed the costume I’d been wearing as a ‘good patient’ for all those years, I realized that I’d have to face the fear of the unknown— of owning my feelings, taking responsibility for my actions, of facing emotional discomfort without retreating, and of discovering who I really was underneath it all. It required faith, less so in myself in the beginning and more so in other people, because I needed to trust that if others in the recovery community had once been as lost and hopeless and empty as I was but no longer were, the same was possible for me, too.

Although it may be impossible to fully dismantle the inherent power differential between the mental health “professional” and his or her “patient”, it is entirely possible to gain an awareness of how easy it is for a person entering the mental health system to forget that there is always an exit somewhere down the line. By keeping a basic awareness of our innate capacity as humans to heal, becoming a patient no longer has to mean stagnating in the muck and mire of “chronic mental illness”, but rather, becomes more like weathering a storm that may pack hurricane force winds but that promises impermanence.

Although it took searching through the darkness of the unknown for me to find my own exit, the journey gave me the strength to search deep within myself to find those deep-seated roots that had twisted themselves deep into my core and to begin work at unraveling them with the help of peers who’d started their recovery journeys before me. As a result, I was able to face the treaters I’d worked so hard to gain acceptance from and assert my needs and desires, and I’ve come to believe that the only acceptance I need to create a life worth living is the acceptance I am learning to have of myself.

Tuesday, November 22, 2011

“Cutting Knowledge” to Recover Ourselves

I am incredibly excited to be joining the Foundation for Excellence in Mental Health Care as a blogger.  The Foundation’s vision, which states that “All People have hope, knowledge, tools, and community available to them to recover from mental health and trauma challenges”, is completely in line what I’ve come to believe in my heart after experiencing my own mental health recovery.  Had you asked me whether I thought recovery from “mental illness” was possible a little under two years ago, I would have shaken my head and said that it wasn’t.  Since that time, however, my life has utterly transformed, and I live today without a psychiatric diagnosis, off of all psychiatric medications, and no longer in psychotherapy, after spending thirteen years immersed in the mental health system. 

Some of you may know a bit about me through reading my blog on Robert Whitaker’s website,, where I’ve been sharing my story of mental health recovery.  I will continue to share my story there, and focus my writing here on the current issues in mental health reform—from the labeling and pathologization of emotions, the Diagnostic and Statistical Manual (DSM), and the impact of stigma; to ideas about informed consent, shared decision-making, psychotropic medications, and agency; and to the peer movement, mental health recovery, and hope.  But let me take a minute here to tell you briefly about who I am today.

I am twenty-eight years old, live in Boston, Massachusetts, and work as a Peer Specialist in the traditional mental health system.  I am a recovering alcoholic who took her last drink in February 2010.  I take a holistic approach to my personal health, focusing on nutrition, exercise, meaningful human connections, and the cultivation of a spiritual life.  I still experience some of the same thoughts and intense emotions I felt during my years living with a psychiatric diagnosis, but I now relate to them in a profoundly different and non-pathologizing way—one of the keystones of my recovery.

Some in the medical profession might challenge my story and say that I must have been “misdiagnosed”— that someone must have made a mistake along the way in telling me I had bipolar disorder and borderline personality disorder, because once someone has a mental illness, that person has it for life.  Whatever the protestations I may hear, and whatever the factors that contributed to my thirteen-year relationship with psychiatry may have been, I stand firm in my belief today that no matter how far down the scale a person has fallen, the innate human capacity to heal never disappears.  I have full faith in that universal aspect of our nature— that each of us has a deep wellspring of hope that might dwindle to a drip but that never fully dries out and is always capable of being replenished.

When I think about the stark contrast between the emotional and psychological darkness that encompassed me during my years as a self-described person with “chronic mental illness” and the lightness and hope that surround my life today, I feel overwhelmed with gratitude.  This gratitude reminds me that I am one of the lucky ones to make it through to the other side of the mental health system, miraculously intact and healthy, and that it is my vital responsibility to carry a message of recovery to those who don’t yet believe it, whether because they don’t want to or because they’ve lost faith in themselves that they can attain it.   

When Gina Nikkel and I met at the annual conference for the International Society for Ethical Psychology and Psychiatry (ISEPP) in Los Angeles several weeks ago and she asked if I’d be interested in blogging for the Foundation, the timing couldn’t have been better.  As a newcomer in the world of mental health reform, I was in the midst of my first foray into the part of the movement occupied primarily by mental health professionals, and I was quite moved and energized by what I saw: a large room of people whose professional identity is deeply tied to the very thing they have come to question— the idea that biomedical language, maybe even science, itself, holds the key to our understanding of emotional suffering—and who are passionate about discussing alternatives. 

Challenging this predominant paradigm through which the majority of modern Western society understands thoughts and emotions requires dialoguing from numerous angles, including the philosophical/ethical, the medical/scientific, the spiritual, and the experiential/peer/survivor.  My goal in writing this blog is to use my lived experience with both “mental illness” and recovery to help create a space where such dialogue can take place.

When I think back to the many years in which I unquestioningly used biomedical language to make sense of my experiences, I can’t help but reflect on the deep-seated belief I held that I could never and would never recover.  This belief was reinforced by countless mental health practitioners, who told me I might be able to “manage”, but only if I listened to my doctors and trusted that they would eventually find the right combination of medications to “treat” my bipolar disorder.  It was suggested that I think about my bipolar disorder as a lifelong condition “just like diabetes”.  Until we separate ourselves from such a reductionist mindset—that emotional suffering is an incurable biological disease requiring medical treatment— I worry that the concept of recovery will never truly take hold in mental health care.
And just what do I mean by the concept of mental health ‘recovery’?  Let me begin by saying that I believe it means no one thing.  Each of us carries unique experiences that shape who we are; to throw a standardized description of recovery to such human diversity would be to operate in the same single-track mindset that biomedical psychiatry has in its belief in psycho-pharmaceutical treatment.  I believe that mental health recovery is achieved when one finds meaning in his or her suffering, and can thus begin to relate to that suffering in a way that is no longer disempowering and imprisoning.

I can truly say that I am happier, healthier, more hopeful, and more connected to the vitality of life today— medication-free, diagnosis-free, and therapist-free— than I’ve been since very early childhood.  By stating this, I am not suggesting that my own route out of psychiatry is the only way to achieve recovery; indeed, each individual goes down a unique path that may very well include facets of the traditional mental health system. 

My goal in writing this blog is not to convince others that they need to believe what I believe, but rather to challenge preexisting ‘truths’ about the nature of emotional suffering.  As my favorite philosopher-historian, Michel Foucault, once wrote, “Knowledge is not for knowing: knowledge is for cutting”.  Indeed, it is easy to use the seductively ‘objective’ language of medicine and science to explain in a black-and-white way what is inherently gray.  The simple fact that biomedical knowledge exists about the causes and conditions of emotional and psychological suffering shouldn’t make it an unquestionable truth.

That being said, there is one truth to which I will hold fast, for I believe it resides at a human level as primal as our need for oxygen: recovery from mental health issues, however “acute” or “chronic” they may be, is entirely possible.  I know this is true because it has happened for me, after nearly a decade of living with a “chronic mental illness”.  I know this is true because I have heard many stories from others who have been similarly graced.  I know this is true because human beings successfully lived with emotions for thousands upon thousands of years prior to the birth of Thorazine just sixty years ago. 

I held no chance at tapping into my potential for recovery— not just from “bipolar disorder”, but also from the all-encompassing language of pathologization that is part and parcel of biomedical psychiatry— until I discovered that my essence as an emotive human being lies deeper than any pill bottle or medical textbook.  It is upon such a foundation that this blog will be written, with an open mind and an open heart to explore what’s working and what isn’t in the mental health system.