My Life in Labels
By Sandy Naiman
Network, Spring-Summer 2007
The older I get, the more I detest labels, so I lose them or use them as I choose, but I refuse to be defined by them.
I’ve had my share: Schizophrenic. Catatonic schizophrenic. Manic Depressive. Bipolar I. Hypomanic. One of my psychiatrists once diagnosed me as having a borderline personality disorder. Luckily, that one never stuck. Unfortunately, though, most psychiatric labels do. Right or wrong, labels have a habit of sticking.
By definition, a label or classification is restrictive. But labels are often inaccurate, and in psychiatry, this is commonplace. After all, you’re dealing with diagnostics in an imprecise science – the interplay between the brain and the mind, emotions as they colour behaviours, the medical mind-body connection – not just a liver, a kidney, a heart or a broken bone. Are mental illnesses diseases or psychosocial problems? Or both? More than any other medical specialty, psychiatry is by nature subjective and amorphous. No wonder most people diagnosed with a mental illness can list four or five different diagnoses for which they’ve been treated, especially if they’ve been in treatment for any length of time.
Years ago, a diagnosis could depend on where you lived. In the 1970s, the joke among North American psychiatrists was that ‘you could cure schizophrenia if you could fly to Europe.’ Psychiatrists there, using the tighter diagnostic criteria of the World Health Organization’s International Classification of Diseases or ICD, would more likely diagnose you with bipolar disorder, which was more treatable. Here, where the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders or DSM is the standard reference, you would most likely get stuck with schizophrenia – then, much harder to treat and often considered hopeless. Now, such discrepancies are less likely as diagnostics have become more globally understood.
Still, there are no reliable biological markers, no blood tests or x-rays or urinalyses for psychiatrists to determine whether someone has a mood disorder or a thought disorder or an anxiety disorder or a borderline personality disorder or any other disorder, and there are hundreds of them.
As you read this, the American Psychiatric Association is hard at work on a new and improved DSM. The fifth edition, slated for publication in 2011, will be chock full of new criteria, new classifications, new symptoms and new disorders – new pigeonholes into which psychiatrists must try to fit their patients. Must because labels aren’t just applied for kicks – they help to determine the course of treatment.
New information is surfacing all the time. Labels change. Language changes. Socially and culturally, our collective consciousness is constantly evolving – and, with the mind, that matters. Some people prefer to call psychiatric illnesses ‘brain diseases’ because of an increasing understanding of brain chemistry and the psychotropic drugs used to alleviate psychiatric symptoms. It is also an attempt to heal a specialty scarred by centuries of superstition, mythology, misinformation and entrenched fear.
Research has shown that most North Americans still believe that people with mental illnesses are dangerous, a myth the media perpetuates. Even some psychiatrists and mental health workers denigrate the patients with whom they work. No wonder a psychiatric diagnosis, more than any other medical label, places such a huge burden on the patient. It is more than simply a linguistic symbol describing a series of symptoms. A psychiatric label describes not only a behavioural disturbance but a state of mind, a personality, a spirit, a persona, an individual. Though no two individuals are identical with identical life experiences, when you are given one of these labels, you are treated like that label, given medications for that label, and it becomes your defining feature. The individual behind that label often gets lost. You become your diagnosis.
Mental illnesses are chronic, but increasingly and effectively treatable, yet you’re considered to be mentally ill rather than a person with a mental illness. People, including many mental health professionals, inadvertently refer to ‘the mentally ill’ when they should talk about ‘people with mental illnesses.’ We are all multifaceted and far more than our illnesses. With other chronic illnesses, like asthma or diabetes, you can be asthmatic or diabetic without being degraded by your disease. Not with a mental illness. In our modern idiom you ‘suffer’ with a mental illness, even though millions of people live and thrive with their mental illnesses.
Language is political and it matters. Use it accurately. Pay attention to it. Be conscious of it. Doing so can only help heal the sick public discourse about a population of people who can no longer be ignored. We’re everywhere. Some of us are homeless. Some of us are invisible. Hidden or in hiding. Still afraid to come out with our craziness. Yet we can all be a little crazy, sometimes, can’t we?
The mind is not a broken bone that can heal if put into a cast. When I was a kid, I was sent to a psychiatrist each week because I was said to be histrionic, wildly emotional, and I didn’t fit in. The cast was an analogy my mother used to help me accept my treatment and become a happier child.
‘If you have a broken leg, you go to a doctor and have it set so it can heal. And if something’s wrong with your mind, you go to a psychiatrist and talk, so your mind can heal,’ my mother used to say, with all the best intentions in the world.
The only problem with this analogy is that when the cast comes off, you can see your leg working. But no cast comes off your mind to show when it’s healed. You never know for sure. Yet, I grew up feeling there was ‘something wrong with my mind.’ Those five little words were the first and most enduring label of my life. They still haunt me. Long before I even knew my mental illness had a name or names, I internalized that label. I was 12.
Innocently, unwittingly, I talked openly with my friends about my weekly psychotherapy sessions – it never occurred to me not to – but some of them whispered about me behind my back or openly called me names: ‘Mental.’ ‘Crazy.’ ‘Loony.’ ‘Insane.’ ‘Nuts.’
I had no idea psychiatry in the early 1960s was, unlike physical medicine, an unmentionable, unscientific science. My family was filled with doctors and psychiatric social workers. No one ever hinted that I should feel odd about going to a psychiatrist. For me, it became my norm.
We talked about my psychiatric sessions openly around the dinner table, just like we talked about anything else. My sister might mention her weekly appointment with her allergist, and I might discuss my ongoing adventures with my psychiatrist.
I learned fast, however, that my psychiatry sessions were far from the realm of my friends’ experience. Psychiatry wasn’t table talk in their homes, and what kids don’t know or understand, they fear and ridicule. The words they spit at me were brutal – my first brush with the stigma that clings to mental illnesses and to those of us who live with them. I’ll never forget their sting.
I had been going to a psychiatrist for six years, was hospitalized twice, endured several rounds of electroconvulsive shock treatment, and was relentlessly tranquilized by a then-revolutionary drug called chlorpromazine – it replaced lobotomy as a treatment for mania – before I found out, at the age of 18, that my mental illness had a name.
My psychiatrist at the time, at the Clarke Institute of Psychiatry, handed me my five-inch-thick file. The previous year, I had spent seven months as an inpatient on the eighth floor. I was visiting him for a referral to an outpatient therapist. Instead, he pronounced me ‘cured,’ ushered me into a glassed-in cubicle a few steps from the in-patient unit, sat me down and told me to read about ‘how far I’d come.’
That’s when I first saw the word schizophrenic describing me at the age of 12. The word catatonic was added by the time I was 17. Now, I knew there really was ‘something wrong with my mind.’ I could look myself up in the dictionary. And I did.
Seven years after these revelations, following another lengthy hospital stay for psychosis, my diagnosis was changed from schizophrenia, classified in the DSM as a ‘psychotic’ disorder, to manic-depression, a ‘mood’ disorder.
In 13 years, my diagnosis had changed three times, although my symptoms were always the same. Over time, as the psychiatric community increased their knowledge of the disorder, manic depression (which is by far its most descriptive name) became known as affective mood disorder, and then bipolar disorder. Rather than helping people understand these illnesses, medical terminology needlessly muffled their meanings and muddied the public discourse.
None of those labels ever felt right to me because I have never been clinically depressed. Just high. Psychotic. Manic. Unipolar. I was never psychotic until after I was first hospitalized for observation, at 14, when an orderly sexually assaulted me. My current psychiatrist has suggested this trauma may be the precipitating cause of my mood disorder, although the genetic predisposition was always there.
During the 16 years I was labelled manic-depressive, I was prescribed a steady diet of lithium carbonate, which I took religiously. During that time, I was hospitalized almost every year for mania. When I was 41, and again hospitalized for mania, doctors discovered I was in fact suffering from acute end-stage kidney failure caused by lithium toxicity. I encountered a new label – ‘iatrogenic’ or ‘treatment-caused’ end-stage kidney failure, which necessitated two years of dialysis and a kidney transplant. Oddly enough, I felt relieved to be physically, not just mentally, ill. I finally had my ‘broken leg.’
Talk about labels.
Sorting and classifying has its uses, but the inherent danger in adhering too closely to labels applied to the mind is manifold. In my case, the sense that there was ‘something wrong with my mind’ has marked me profoundly.
In 1977, when I was hired as a staff writer at the Toronto Sun, my mental illness was no secret. I’ve always been ‘out.’ But I always felt so beholden to ‘The Little Paper That Grew’ for hiring me – a courageous move for a corporation and one that should be routine – that I never felt I could ask for a raise, and for 30 years, I never did. That’s how insidious labelling-turned-inward can be.
That doesn’t matter anymore because now I’m self-employed. And with years of psychotherapy and appropriate medication, I’ve gained the insight that enables me to recognize the early warning signals of hypomania so I can take my prescribed medication and prevent full-blown mania.
Pills alone will never give you insight. Only psychotherapy will give you that. Yet lack of insight in serious psychiatric illnesses, when you’re psychotic, has its own label: ‘anosognosia’ or ‘the denial of one’s own illness.’ I’ve been there many times, and it’s the most frightening feeling of all. Nothing makes sense. There is no logic. No one understands what you’re saying. You feel like everyone else is crazy and you’re perfectly fine, when in fact, the opposite is usually true.
Anosognosia is a defining characteristic of psychosis, but it’s a real Catch-22. Psychosis means losing touch with reality and anosognosia becomes your reality. But anosognosia isn’t real. It’s the denial of what’s real. It’s unreal. A hallucination. Voices only you can hear. People you perceive to be threatening you.
Even something as seemingly benign as serious sleep deprivation can cause anyone to have a psychotic break. With me, sleeplessness always triggers my hypomania. If my mind is racing, I medicate to induce sleep, thus interrupting the cycle. If I sense I’m slightly psychotic, I medicate with a tiny dose of a powerful antipsychotic. This insight into my condition didn’t come from a pill. It has come through years of hard work with a skilled and compassionate psychiatrist who treats me, the person, and not just me, the label.
Would that this were the case for everyone with a mental illness.
Sandy Naiman, a Toronto writer, received the 2007 ‘Deloitte Hero Award’ from the Mood Disorders Association of Ontario for her mental health advocacy. She can be reached at firstname.lastname@example.org.
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