Personal Accounts: Color Within the Lines … Think Outside the Box

When my mental health became overtly dysfunctional 32 years ago, psychiatric disorders were assumed to be caused by family pathology and patients were expected to talk their way to health. Even affective and psychotic symptoms were assumed to be rooted in internal conflicts caused by pathological parenting. Medications were palliative and were used only to facilitate talk therapy.

Despite these limitations, people who presented with typical diagnostic profiles, who responded well to medications, and who had adequate medical insurance coverage could be helped. However, with an atypical profile, my disorders could not be properly diagnosed, and treatment efforts went awry. The challenges that I presented to mental health professionals—and to myself—were often insurmountable. For the first several years, each encounter resulted in a different diagnosis, a change of medication, and new prognostic expectations.

With each treatment failure, I became more depressed and desperate. I felt uncared for, ignored, dismissed, and abandoned. I felt that I was being discarded. I was treated as though I couldn't be helped or wasn't worth helping, and I came to believe that it was so. I was called "manipulative and noncompliant," and my parents were told that I probably couldn't be kept alive. My treatment teams agreed that I had to "hit bottom." I was "resistant" to treatment. I had the audacity or perversity to fail to get better; my basic character was flawed and I was responsible for my own misery.

Possessed with the aura of infallibility, doctors blamed me for their own lack of success. There was no room for them to misdiagnose or to make mistakes, or for alternative theories or treatments to be imagined. They set the stage for a self-fulfilling prophecy, and I played the starring role.

After several years of decline and three unsuccessful hospitalizations, I finally did receive appropriate and adequate help. Nevertheless, I recognized that I had to be my own therapist and resolved to distance myself from institutional psychiatry. My initial efforts were crude and consisted primarily of various forms of denial (that anything was wrong with me), blocking, and magical thinking (to control anxiety). I relied on external connections to support me during dangerous depressions, and, without reflection, patterned my life after those of my childhood friends who were married, working, or parenting. It didn't occur to me that I needed to make allowances for my mental health problems, because I did not acknowledge them. Nevertheless, my life was decidedly more troubled, less satisfying, and more difficult than I thought it should be. I didn't know why.

Twenty years later, I was once again on an inpatient unit trying to understand myself and the changes in psychiatric practice that had occurred over the years. No longer did I have a flawed character; now my depression was a mood disorder with a physical cause—an atypical bipolar II disorder with rapid cycling. Being told that I couldn't talk my way to health left me feeling helpless and vulnerable. I didn't know how to work with a condition like that. The final blow to my loosely constructed sense of self was to be additionally diagnosed as having borderline personality disorder. This presumably explained the mood shifts that the bipolar diagnosis could not.

For the past five years, I have grappled with the implications of these diagnoses. I have struggled to develop healthier coping skills, and I have begun to construct a conceptual system, which I refer to as grids, to link the behavioral, moral, and spiritual facets of my life. This structure helps me keep track of who I am and what I'm about. It is resilient and flexible, and it helps me to define my behavior; it compensates for my lack of personal security and protects me like a fence would around a well. I experience my borderline condition as a gaping internal hole that threatens to swallow me as I walk around its perimeter. I see into the hole and sense its depth, but I am protected by my grids from plummeting into it. Graphically expressed, for safety's sake, I must stay within the lines.

I have also tried to develop a behavioral grid to guide my relationships. The best of these are created and governed at the point where trust, limits, and constancy meet. This is my TLC. I can trust others best when our respective boundaries are recognized and maintained in a consensual agreement. Being able to rely on these boundaries helps to define my role and creates stability in my actions, thereby reducing my confusion and helping to prevent feelings of engulfment. "Constancy" provides another reliable fence by slowing my perception of change. It reduces my need to interpret and adapt to new situations and relationships, which can generate unbearable anxiety. It addresses my need for clear and reliable external expectations and consequences.

Unfortunately, as I have increasingly participated in the mainstream of life, I have come to rely more on constancy than on flexibility to manage my anxiety. I am more susceptible to confusion now and adapt more slowly and with more difficulty than I would like. Sometimes, I feel as though I don't merely have a full plate, but that I am operating a restaurant.

Using these behavioral and relational grids obviously does not solve all of my problems and may cause others to expect behavior that may be difficult or impossible to deliver. Avoiding the cognitive handicaps of polarization, splitting, and impulsiveness requires constant vigilance. Sometimes I fail. The consequences may be negligible in close personal relationships, or they may have serious repercussions, such as in the work environment. To paraphrase the familiar descriptor, I march to the beat of my own drum; I am frequently out of step with important others, and, fearing a significant misstep, I need to tread lightly throughout my day.

"Coloring within the lines" creates the quality of my life. My unique lifestyle is created on a daily basis by selecting from the palette of my life experiences. The choices reflect my deepest desires and needs, preferences and opportunities. Hopefully, when my life is sufficiently structured and safe, I am able to choose and use these colors well. With artful expression and discipline, I can choose to communicate the best (or worst) of my self in as unambiguous (or ambiguous) a manner as I wish. The key here is choice. For without clarity of self there can be no true choice.

"Thinking outside the box" allows me to distinguish myself from others and to contribute to society. Overcoming the challenges imposed by my mental health requires hope, persistent effort, thoughtfulness, and informed guidance. Persistent effort is the engine that moves me along my pathways; hope is the power that drives it.

The kinds of change that I continue to seek are accomplished with the assistance of therapists who understand and accept their personal and professional limitations. They genuinely appreciate and respect the problems of using a "broken mind" to fix itself, and balance safety and risk taking in pursuit of therapeutic change. These therapists have traveled the road with me, observing and participating in the changes that took place over time. Whenever a therapist failed to appreciate these changes, further growth was impeded and frustration and discord were introduced into our relationship. When either of us took excessive or inappropriate risks, my life was placed in jeopardy.

The most difficult behavior for me and for my therapists to manage has always been that of manipulation. Appropriate manipulation of our environment is necessary for everyone's growth and survival. My use of manipulative behavior has always been driven by a sense of urgency. At those times, my behavior may have been uninformed, misdirected, or poorly expressed. However, whenever my behavior was simply labeled and rejected as "manipulative," therapists were able to avoid their responsibility to examine their own behavior and the ways in which it blocked my progress. The label also allowed them to avoid trying to understand what I really needed and was not getting. Whenever I was considered manipulative or resistant, communication channels collapsed and the consequences for me were always injurious. Although my attempts were not always appropriate, I clung to this tactic because I knew no other way to achieve my goals. The stigma of this label haunted me wherever I sought treatment and effectively prevented me from examining the utility of this behavior.

Our diagnostic tools, axes, and differential diagnoses are more sophisticated now. We have a plethora of new and specialized medications and creative "off-label" uses of older medications. We have more—and more sophisticated—treatment modalities. Ironically, we also have reduced benefits, both outpatient and inpatient, which often prevents us from benefiting from these advances. Achieving health under these conditions is an uphill struggle, similar to that of the mythical Sisyphus.

Thankfully, we have a new understanding and attitude toward mental health. Doctors are no longer considered infallible, and consumers are acknowledged to be a valuable resource. As recently as ten years ago, I couldn't admit to a consumer support group that I suffered from a mood disorder; now I can proclaim it publicly in a national forum. This is a hopeful time for people who suffer from some types of mental illness.

Personality disorders, unfortunately, continue to challenge our best efforts. I wish I could say that the lessons I have learned could be easily adapted for others who share this diagnosis with me. I always felt that I would be all right if I knew that someone was listening to me and trying to understand what I was saying. Maybe people were listening and I couldn't recognize it; I'll never know. Perhaps that is the only lesson I can offer.

In the meantime, we all need to retain our vision of "normalcy," discover the benefits when we can, and limit the damage when we can't. Personally, therapeutically, and spiritually, I will continue to find the blessings in adversity; I invite you all to join me.

Ms. Granat-Goldstein is intake/member services representative at Community Behavioral Health of the City of Philadelphia Behavioral Health System and a member of the board of directors of Matrix Research Institute in Philadelphia (e-mail, [email protected]). Jeffrey L. Geller, M.D., M.P.H., is editor of this column.