"Normal Is a Place I Visit"
The following essay by Dr. Suzanne Fiala appeared in the Journal of the American Medical Association as an editorial, written for a feature which it appears regularly in this journal, called "A Piece of My Mind". Here's the official publication data (I hope no one objects to my having made the following piece from this journal available. It is such a public service that I hope the editors at JAMA would be pleased to see it widely available).
Normal Is a Place I Visit
I LIVE IN A DIFFERENT WORLD. I GO THROUGH THE SAME motions as others: I wake, relate, and work. But my life plays out in a different theater. The on-stage me is an illusion. The actor is friendly and outgoing, provides good patient care in a group practice, and successfully juggles the rigors of home and career as a single parent. She appears to live a hectic but happy life, and manages to do it with efficiency and grace.
I have bipolar disorder: manic depression. Normal is a place I visit, not one in which I am allowed to remain. I vacillate between recurrent depression and occasional episodes of exuberant, expansive hypomania. After 30 years of living with this illness I have become adept at hiding it. But it continues to be difficult to bear. The pain, fatigue, and loneliness are, at times, overwhelming.
I play many roles: physician, mother, daughter, sister, friend, music-lover, avid reader, and gardener. Most of the time, I love the things that I do and I do them very well. At other times, I struggle just to climb out of bed and get through a day an hour at a time.
In my family tree one can connect the dots of mental illness through four generations. My father was severely affected, as was his father. Two of my three sisters have mood disorders of varying severity. Several of their children and two of my own suffer from bipolar disorder, depression, anxiety, obsessive-compulsive disorder, or ADD. The third sister and her children have been spared.
At 14, I did not have the words to explain the moods that afflicted me as they did my father. I recall telling my mother that although I was frequently depressed, when I felt good I felt “better than good.” Better than she could even imagine: a child's innocent definition of bipolar disorder. It only gradually dawned on me that few people experience the world from this place that I considered normal.
I am a high achiever. Though I was diagnosed with recurrent depression while in medical school and was treated with a variety of antidepressants, I went through medical training with flying colors. Upon my graduation I was the recipient of an award given to the graduate who demonstrated outstanding dedication to studies and clinical work and compassion for patients. I was chief resident of my prestigious residency program. My professional record is excellent and unblemished.
Eight years ago a personal tragedy caused my illness to fully manifest itself and wreak havoc. After the event occurred I did not sleep for many weeks. My mind was a blur of irrational thoughts and feelings. Though my behavior was erratic and my actions out of character, I did not realize I was ill. Eventually the manic symptoms burned out, leaving me desolate and suicidal. I was hospitalized for 2 weeks in a psychiatric unit. It was there that I was diagnosed with bipolar II and began the struggle to understand, accept, and consistently treat my illness.
After the hospitalization, I sought counseling, trying and discarding a series of doctors and medications. I would follow doctor's orders until I believed that I was cured or simply knew best. Then I would scrabble for alternative options: mega-vitamins, herbs, acupuncture, hypnosis, magnets, religion. When those methods failed and I crashed, I would grudgingly return to a new doctor to try again. My resistance and denial took years to overcome.
For the last 6 years, I have had the same, wonderful psychiatrist. He knows me better than any other person does. I see him regularly. In his office, I can talk freely and honestly about every aspect of my life. He functions as my objective safety net, monitoring my ability to practice medicine without jeopardizing my patients.
He and I try to find the right permutation of medications that will allow me to operate closer to the x-axis with the fewest adverse effects. Side effects abound: headaches, nausea, constipation, lethargy, no libido, irritability, sedation, poor sleep, night sweats, disturbing dreams, impaired memory. Medication is not fun, but it beats the alternatives.
Without treatment, I can feel my brain chemistry changing, almost like an aura preceding a migraine or seizure. A speck appears on the horizon and I am filled with foreboding. I know a storm is brewing. It is like a twister gathering force as it bears down on me. It twists and mangles my thoughts and erodes my relationships. I become distracted and lose things. I forget to pay my bills. Surviving and monitoring my internal reality demand most of my attention and energy. Getting through a day of work, going to the grocery store, and getting the children to bed take every ounce of discipline I possess.
Without medication I periodically fall into desolate and hopeless depressions. Moving my body and mind through a day is like wading through wet cement. There are times when I wish that I would fall asleep and not wake up.
I have also experienced periods of overwhelming anxiety. My mind will race in circles thinking about all the people and animals in the world that are in pain or hungry. I feel the burden of their suffering on my own shoulders. I wonder if I turned off the stove and need to check it three times before being able to go to bed. I lay awake wondering when my parents are going to die, and how I will go on after that comforting touchstone is gone. I make rounds on my sleeping children and count their breaths, and pray for their health and safety.
Before I sought consistent treatment, my manic times were too crazy. I recall looking at stuffed rabbits in a department store display and finding them so strangely appealing that I felt compelled to buy six to give to friends. Or becoming fascinated one day with the subjects of geology and fossil hunting, buying almost a dozen reference books in one afternoon and never opening them again. I would get new pets from a shelter. I would buy a new car over the weekend, or give extravagant gifts that I could ill afford to people that I loved. I would forget to eat until I drove to the quick mart for candy bars and cookies late at night. I tossed and turned without sleep waiting for the sunrise.
Today my manic periods are mild. I just feel exquisitely, superbly good. Colors are brighter, music is richer; I am intoxicated with life, exuberant and overflowing with joy. Everything is Technicolor and Surround-sound. I am considered a “high-functioning manic-depressive”; my highs make me sharper, give me energy and an edge. I feel like a finely tuned violin, experiencing the vibration and nuance of the slightest stroke.
It has not all been negative; this disease has also brought me unexpected gifts. It gives me energy and passion and a core of strength and resilience that have served me well. My analytical and intellectual skills have not been undermined by manic depression. Some aspects of being a good physician are enhanced. The illness has given me a compassion and sensitivity for others that has made me a better doctor. Being personally intimate with pain and suffering has been translated into an ability to reach out to my patients at a deep level of connection and caring. My experiences with the extremes of emotions make me feel more in touch with the joys and sorrows of being human. I have felt emotionally reborn countless times, awakening from the black shroud of pain and despair to transcendent joy at being alive. Only from a place of such hopelessness and suffering can I fully cherish the sunlight, hear the music of the wind, and know the sacredness of birds singing at sunrise.
No matter how well things are going, my radar is always scanning the perimeter. The illness still lulls me into thinking I have finally exorcised it, only to rise up and remind me of its presence. Though I have been stable on medications for over 6 years, my symptoms never fully disappear. The tides of change are always present in my head, just in a much muted, more tolerable and manageable form.
I have made an uncomfortable peace with the fact that my illness is chronic and will be with me for the rest of my life. I don't know what a mind without drastic and recurrent mood swings would feel like. Manic depression is as much a part of me as my blonde hair and blue eyes. I now treat it with the attention and respect it requires of me.
Manic depression has affected every aspect of my life. I yearn for a normal family and have tried more than once to maintain a marriage, but my illness has intruded. Manic depression has affected my ability to maintain a long-term relationship as well as my ability to choose a healthy and loving partner in the first place.
Though I am considered gregarious with patients and acquaintances, I have few intimate friends. I hold people at a safe distance. Hardly anyone is allowed to see me backstage, sans makeup and costume. Having friends only raises the stress level to be “on.” I do not plan far ahead for I don't know what my mood will be when it's time to go to the book club or concert. I am a sailboat tacking into a perpetual headwind, my life a series of zigs and zags.
My illness has been my deepest secret. Aside from my family and personal physicians, I have told fewer than five people of my illness during my life. To this day, members of my family have never openly discussed my illness or my hospitalization. My family is not cold or uncaring; they are just uninformed and uncomfortable with this subject. As is most of our society.
I have lived in fear that one day I will be unable to continue the pretense of being normal and will be “found out.” My medical colleagues don't know. As a clinician and physician, I am seen as intelligent, efficient, and compassionate. I am unpretentious and friendly and care deeply about my patients. I am known for not mincing words, but I have earned the respect of my peers and the loyalty and trust of my patients.
If my colleagues knew that I was bipolar, I fear that I would never again be taken seriously, that I would be viewed as the “impaired physician” who, at a display of passion or emotion, would be seen as having an “episode.” My hard-earned credibility would be gone. My right to express even normal anger or irritability, happiness, or my effervescent sense of humor would be suspected as pathological. I would lose the right to just have a bad day.
If I had lost a breast to cancer or had Parkinson disease, I would have the concern and sympathy of my community. But this illness is perhaps harder to bear because it is yoked with shame and secrecy. I am not missing a body part nor do I have a resting tremor. Yet I still struggle with a chronic and debilitating illness associated with a high morbidity and mortality rate.
I tell my patients to try to accept mental illness as a medical model like diabetes or hypertension. I discuss genetics, neurotransmitters, and the latest medical studies. I point out that they would not feel disheartened if they could not control their blood sugar or blood pressure by sheer willpower; nor should they feel shame at needing medication for mental illnesses.
I can talk a good talk, but I know the reality of the walk. I have heard too many physicians joke about their “crazy patients,” seen political careers ruined due to hints of depression. I have stood silently by: angry, but too ashamed to speak out.
While I was in medical training a local family physician made the news. He was known as a kind, compassionate, and wonderful doctor. His patients loved him, he was respected within the medical community, and he had a wonderful family. One day he pulled his car over to the side of the road and shot himself in the head. I know that kind of desperation. The pain of mental illness paired with the isolation and shame of the illness can be a lethal combination.
In any given year, more than 54 million (or one in five) Americans suffer from a diagnosable mental disorder, and one in five families is affected by severe mental illness in their lifetime. Severe mental illnesses are more common than cancer, diabetes, or heart disease. They are the second leading cause of premature death. The No. 1 reason for hospital admissions nationwide is psychiatric disorder. One in five youths in juvenile justice facilities has a serious emotional disturbance, and most have a diagnosable mental disorder. Bipolar disorder alone affects more than 2 million Americans. Comorbidities of mental illnesses include increased rates of suicide, substance abuse, incarceration, homelessness, divorce, functional impairment, disability claims, and hospitalization. Yet mental illness is routinely underdiagnosed and often goes untreated.*
Statistics indicate that one in five of my medical colleagues is mentally ill. One in five attorneys. One in five teachers. One in five firefighters. One in five businesspersons, pilots, grocery clerks. Think of it, there are so many of us. But we don't talk about it.
Discrimination and bias against people with mental illness are among the last vestiges of a socially tolerated prejudice. Our children deserve to grow up in a world in which excellent medical resources are matched by a depth of understanding and acceptance; a world in which mentally ill persons are treated with respect and basic human dignity.
I see in two of my daughters the traits of bipolar disorder and anxiety. Watching them struggle is like looking in a 20-year-old mirror of myself. I want their lives to be different. I want them to realize their beauty and worth despite the brain disease that they may have inherited. I want them to love themselves, have happy marriages and supportive families, and be sensitive to the possible impact of mental illness on their lives and on the lives of their children. Most of all, I want them to live without the chaos and turmoil that has defined my life. It is for them that I am stepping out of “the closet” to discuss my mental illness despite the potential negative impact on my career and other aspects of my life.
If I continue to live pretending to be other than who and what I am, how can I hope the world will evolve and become a better place for them? It is time to give mental illness a name, a face, a story. Only in doing so will the stigma of this disease lose its power.
I challenge my colleagues and peers touched by mental illness to do the same. As physicians and community leaders we need to scrutinize our own biases and become leaders in research, treatment, and compassion. As a culture we must better address this silent epidemic.
*Statistics obtained from US Department of Health and Human Services. Mental Health: A Report of the Surgeon General. Rockville, MD: US Dept of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health; 1999. Also the Center for Mental Health Services, National Alliance of the Mentally Ill, Office of Juvenile Justice and Delinquency Prevention. [Context Link]