Letter To the American psychiatrist who diagnosed me with Bipolar Disorder

To the American psychiatrist who diagnosed me with Bipolar Disorder:

Doctor, you probably don’t remember me. But I remember you well. We met at the end of June 2014. I had already spent two days in the emergency room of your university hospital and another week at a regional hospital close to our college town. I was in the fourth year of the graduate program I’d come to the United States to pursue, and I had just experienced my first psychotic episode.  You see, I was terrified. Nothing like this had ever happened to me before. I did not have a history of mental illness, nor did anyone in my family. I did not do drugs, and I had never been intoxicated in my life. Nothing traumatic happened the day my psychosis began, and although it resolved as quickly as it came, it left me with a profound sense of trauma for years to come. But that is not what I want to talk to you about. I want to talk to you about our meeting and the disastrous effects it had on the next six years of my life.

Let me remind you of how it happened: I entered the conference room and sat at the table. You began to ask me a series of questions about my life. I answered all of them in a clear and calm voice as you took occasional notes. No one else was present. I told you about my life in the U.S., my friends, my Ph.D. program, my ex. By the end of this very tranquil conversation, you said something that I will never forget, and I quote your exact words: “If I saw you in a grocery store, I would not think you had anything.”

Two days after this conversation, you convened my mother and a number of your colleagues, and you gave me my official diagnosis: Bipolar 1 Disorder with Psychotic Features. You told me this was a serious mental illness and that I would need medication for life. But you also encouraged me by saying that I had a good prognosis and I would be fine if I took my medications regularly.

Well, let me tell you how it went. I took my medications religiously. Not only did I take them every single day, but I also took them at the same hour and minute of the day: 8 p.m. sharp. I attended therapy regularly. I did not smoke, drink, or do any drugs. But I was not fine at all.

Although I continued with my Ph.D. program, made significant progress on my dissertation, and successfully taught undergraduate students, I also had a psychotic episode every six months for the next four years, no matter how hard I tried, no matter how many different psychiatrists I saw, no matter which medications I switched to, no matter how high the dosage. Every time, I was admitted to the hospital, restrained, forcefully injected with psychiatric drugs, and released a few days later like nothing ever happened. Every time, on a higher dose of drugs than before.

Nothing I did could prevent these psychotic episodes, and I lived for years in constant fear of their return. Nothing helped until one day in 2017 when I was in an airport bookstore, waiting for a flight from my country back to the U.S. I was browsing in the psychology section and stumbled upon Robert Whitaker’s Anatomy of an Epidemic. Backed by research and a critical history of the pharmaceutical industry, the book demonstrated clearly that psychiatric conditions often resulted from prolonged drug treatment. Research on long-term outcomes for psychiatric patients showed fewer hospitalizations when people were not treated with antipsychotics continuously and for life than when they were— even if they initially had a poor prognosis. To reassure you, I did not discontinue my medications upon reading Anatomy of an Epidemic. But this was the first time that I felt some validation of all those unanswered, troubling questions in the back of my mind about my psychiatric diagnosis and medical treatment.

You see, I told you I did not have Bipolar Disorder on the day you diagnosed me. My mother, who regularly treats psychiatric patients, also told you as much, but you did not listen. The reason I knew this? I had never had sudden or abnormal mood changes in my life—not before, during, or after any of my psychotic episodes, and I’m now almost 40 years old. It is true that I was very happy in the days that preceded my psychosis. It was summer, I was on a break, and I finally had time to see my friends. I went to a party for an office mate who had just defended their dissertation. The next day, I met a friend for lunch at a local coffee shop. Earlier that morning, I met another friend for tea. None of them noticed anything strange or unusual in my behavior. They said I talked fast. I always do, so they did not think anything of it.

A few days before my hospitalization, I also found critical evidence that I needed to substantiate my dissertation thesis. Most who have worked for years on a research project will tell you how happy they have felt when—after painstaking work—they see everything coming together. So yeah, I was pretty happy in the days preceding my psychosis, but I was not manic. How do I know? I’ve read the criteria in the DSM-5 that could qualify one for a manic episode. Out of the seven listed symptoms, I had only one: racing thoughts.

They began suddenly on the day of my hospitalization. Their speed and content were terrifying. I felt my brain swell with each thought. I soon realized that I needed medical help and called my best friend in my home country. She immediately understood I was not well. Through a mutual U.S. connection, she called an ambulance to my apartment. The paramedics carried guns. I had never before seen armed medical professionals, but I figured arguing with armed men was not a good idea. I asked to go to the bathroom, took my wallet, locked my apartment, and off we went to the psychiatric emergency room. In the ambulance, one paramedic forcefully grabbed my arm (for bloodwork). I fought back because that’s what a normal person does when grabbed against their will and without warning by an unfamiliar man. For that one act of resistance, I was labeled a “danger to others” and—most illogically of all—“a danger to herself.”

But even at that point, the world was still full of possibilities. You see, no one thought that my striking a medical professional qualified me for a diagnosis of Bipolar Disorder and a lifelong cocktail of antipsychotic drugs and mood stabilizers. Once in the emergency room, I simply received the diagnosis of psychosis. These were doctors like you, trained in your country. They worked in your hospital. They observed me for two days. They did not think I had Bipolar Disorder. I had racing thoughts, I was visibly anxious, I could not articulate a coherent sentence, I was shaking (it was the middle of summer), I experienced a profound change in my sense of taste, and I was extremely disoriented. So yeah, I was definitely psychotic. Fun fact: I also had a visible under-eye infection that had begun several days before. My medical record does not mention this infection anywhere, although it was hard to ignore. You just had to look me in the eye.

But let’s assume, for argument’s sake, that my psychosis was due to a psychiatric condition, not a physical illness or infection. Does having a psychiatric condition make me bipolar?

You may wonder, “Does it matter? You clearly had something, and you clearly needed psychiatric care.” Every psychiatrist to whom I presented this question in the years to come said something along the lines of, “Oh, diagnoses are inaccurate. They are just there to provide guidance for clinical practice. All psychiatric conditions are treated with the same meds, so it really doesn’t matter.” But it does matter. It matters so much that the No. 1 reason for malpractice lawsuits in the U.S. is misdiagnosis, and this includes psychiatric misdiagnosis.

You know why my bipolar diagnosis matters? Well, simply because bipolar is a chronic condition that requires lifelong treatment with mood stabilizers and antipsychotics, or so you claim. A psychotic episode, on the other hand, is just that: an episode. It has a beginning and an end. It does not require lifelong treatment with psychoactive substances. In fact, the best psychiatric treatment for a first psychotic episode is the Open Dialogue model, developed in the 1980s in Finland. Of those who undergo this treatment, 85 percent of patients completely recover (not “remit,” recover), mostly with no meds at all, and certainly not with antipsychotics (they are typically given sleeping pills to regulate sleep). All scientific research I have read about brief psychosis states that patients regain normal functioning and can go back to their regular lives and live medication free.

But I was not fortunate enough to have my first psychotic episode in Finland. I had my first episode in the United States, the country with the worst possible outcomes for the treatment of psychosis, and the highest rates of chronicity and disability, according to the World Health Organization. My own bad outcome was not because I had no health insurance or received poor medical care. My insurance company paid for my hospitalization—at a cost of an astounding $11,500—and I was treated in one of the best hospitals in the world. Your hospital, doctor. Those drugs you convinced me to take for life—the mood stabilizers and antipsychotics you prescribed after talking with me for half an hour and determining that I had Bipolar Disorder—robbed me of my humanity. They made me a sad, anxious individual who could not experience any human emotions besides pain and anger. They messed up my thyroid and menstrual periods, made me gain a lot of weight, and affected my memory and ability to concentrate for years.

What did they not do? Prevent any of the psychotic episodes I had after the first one. Why? Because, evidence suggests and I believe, they caused those episodes. The higher the dosage I took, the worse I felt. And yet, for years, I was convinced I should take the prescribed medication and that the mental side effects I experienced were actually due to my ill brain, although I had never experienced any of them prior to being put on psychiatric drugs. You see, because you convinced me I would need medication for life and I in fact did have a psychotic episode every six months, I believed I must indeed have a severe and chronic mental illness. What else could I have?

The day I found Whitaker’s Anatomy of an Epidemic was the beginning of a profound change in the way I managed my psychiatric care. I began to look for research that could show long-term outcomes for patients with a history of psychotic episodes. I soon found the Myth of the Chemical Cure by British psychiatrist Joanna Moncrieff. I also found stories of lived experience by people who recovered from bipolar, psychosis, and schizophrenia, and I began to plan for reducing my medications. But not long after I started this journey, I became psychotic again. I did not do anything outrageous—just wandered around on campus (a public space) in the middle of the night— but that was enough for the police to arrest, handcuff, and throw me into your hospital’s psychiatric emergency room once again. No one, if you wonder, asked about my diagnosis. By then, I had a history of psychotic episodes and a diagnosis of Bipolar Disorder in my records. Everyone just assumed I was bipolar, and I received the usual cocktail of mood stabilizers and antipsychotics. Three weeks later, I was released. That was the last time I was hospitalized in your country.

Shortly after, I decided that I must leave academia and return home. I felt that unless I left, I would keep having a psychotic episode every six months. It did not matter how profoundly I wanted an academic career in the United States. I had to go. It was academia or my life, and I chose to live.

After I was released, I did not take antipsychotics, but I continued to take mood stabilizers, planning to come off slowly. I returned to my home country and moved in with my parents. I was so traumatized by my last hospitalization that I could not function. But I found an outpatient clinic that believed in a holistic approach to mental health. There, I did things such as receive acupuncture, play with puppies, play basketball, write creatively, make art, and participate in group and individual therapy sessions. It took half a year and one more psychotic episode (shortly after discontinuing the lithium you prescribed), but I was slowly feeling well enough to look for a job.

All this time, a psychiatrist from the holistic outpatient clinic had been monitoring me closely. I first met him at a weekly gathering at which he answered questions about medications, which I attended religiously. He answered every question I had, always with kindness and patience. Although I did not always agree with him, I respected his opinion. Then, by sheer luck, he was appointed to be my psychiatrist. I remember sitting with him and telling him my story. He listened patiently and then said there was something weird about my diagnosis. It did not fit. I remember him telling me, “I do not know what you have. Let’s call it ‘the H. Case.’” He monitored me during my last psychotic episode in my home country—now, more than two years ago. He also reviewed every medical record I had from my hospitalizations in the U.S., including everything you ever wrote about me—the true, the misunderstood, the outright false, and the absolutely ridiculous. He found no evidence for a bipolar diagnosis.

In the meantime, I have changed careers. I began to work in a new field I love. I moved to my own place. I attended career development workshops. I saw my friends. I found a wonderful therapist who shares my history of immigration and my cultural background and who helped me understand my psychosis beyond the medical model. And I continued to educate myself on psychiatry. I began a long process of medication reduction that lasted for about a year under the care of my trusted psychiatrist. The fewer meds I took, the better I felt. Finally, a few months ago, I discontinued my antipsychotic after discontinuing my mood stabilizer six months earlier. Within a month of becoming medication free, I regained my emotional richness, my innate sense of optimism, and my memory and concentration. My period became regular again, and my thyroid returned to normal functioning.

And then, I went to see my psychiatrist and asked him to review my bipolar diagnosis. We talked for two hours. He opened the DSM-5 and the ICD-10 and walked through every symptom listed in those books for Bipolar Disorder and psychosis. By the end of that session, my bipolar diagnosis had been officially revoked, establishing that there was never—and I quote—“clear evidence” to justify it. My past psychiatric experience now lives under the designation of “brief reactive psychosis”—a condition one can recover from without lifelong treatment with psychiatric drugs, as my experience and those of so many others abundantly prove.

I am sure you had the best intentions when we met. You were kind and patient. I think you understood my anger at your diagnosis and diagnostic methods. But you did not listen to me. My stubbornness, my chutzpah if you will, just confirmed for you that I had “problematic personality traits,” as you wrote in my medical record. You did not stop to think that perhaps I came from a culture that values intellectual debate and disagreement, contrary to yours that avoids conflict at all costs. You caused me profound harm that had far-reaching consequences upon my personal and professional life and the lives of everyone I love. As a physician, you swore to do no harm, and you broke your promise.

However, I did not write you this letter to talk about the past, but the present and the future. In the wake of the COVID-19 pandemic and its far-reaching economic, social, and mental consequences, many people will come to you in distress, seeking your help. Do not, I beg you, make the same mistake with them. Do not diagnose a person with severe mental illness within just half an hour of meeting them, especially if the person comes from a different culture, lives by different values, speaks a different language, and has a different emotional makeup than your own. What you can do to help those who come to you is to listen to them and their loved ones. And doubt. Not them; doubt your knowledge, your past clinical experience, your training, the medical model upon which it rests. Assume more frequently that you do not know than that you do. The truth about their condition, whatever it may be, will emerge with time.

And educate yourself. Read scientific research about long-term outcomes for patients undergoing different forms of treatment. Hear those with lived experience who have recovered; there are many more such people than you believe. And maybe, if you do all that, if you do it sincerely and willingly, you will be able to help so many people that are in profound need of care for mental distress in these challenging times.

Sincerely,

H.S.

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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