“If you talk to God, you are praying; if God talks to you, you have schizophrenia.”
–Thomas Szasz, psychiatrist and thinker
in the anti-psychiatry movement
And now we come to a topic that continues to be contentious in scientific communities: schizophrenia. How do we define it? What causes it? What do we tell people who have it, and how long do we wait? No one at the hospital ever explained these things to me—this will, unfortunately, be my refrain throughout the book. In my son’s case, I’m not sure if he received any information related to his diagnosis.
Ferid and I almost never broached the subject. He knew that he was suffering from something, but didn’t accept his diagnosis. As his caregiver, I was supposed to understand this humiliating word, but had only ever overheard it in the hospital halls. The first bits of information gleaned here and there, mostly from the family support association AQPAMM, led me to believe it was an illness of the brain with multiple complex causes and factors, most of which remained a mystery.
The Wikipedia entry, various websites and scientific literature all describe the illness as a curse. In his book Saving Normal, Allen Frances, an American psychiatrist who worked on the revisions to DSM-4 (Diagnostic and Statistical Manual of Mental Disorders) but became a vocal critic of the DMS-5, writes:
Schizophrenia is a useful construct—not myth, not disease. It is a description of a particular set of psychiatric problems, not an explanation of their cause. Someday we will have a much more accurate understanding and more precise way of describing these same problems.1
In the 1980s, renowned American psychiatrist Thomas S. Szasz, a key figure and radical thinker of the anti-psychiatry movement, argued that schizophrenia, the “sacred symbol of psychiatry,”2 does not exist as a mental disorder in itself. According to Szasz, the diagnosis only reduces the person to a victim. His opinions did little, unfortunately, to prevent the label from being used politically, socially and medically on millions of people whose only fault was to experience psychosis.
I was so convinced of being a bad mother that guilt had become a second skin. When you’re trying to get perspective in this kind of situation, a pat on the back and a reminder that it could happen to anyone is not enough. It’s no exaggeration when I say today, looking back with clear eyes: no other diagnosis could have made me feel so ill, so powerless. It destroyed part of my soul; it made me dream of death as a possible deliverance. Let’s not forget, though, that the label was above all something my son had to carry with him wherever he went.
Schizophrenia is a severe mental disorder that, according to the World Health Organization (WHO), affects more than 20 million people across the globe.3 In Canada, an estimated 1 percent of the population lives with schizophrenia.4 Symptoms most often appear during adolescence or early adulthood. High suicide rates among youth are often connected to the label’s stigma and its effect on self-image and hope for the future, rather than a perception that the disorder is incurable.5
The mortality associated with schizophrenia is one of the most distressing consequences of the disorder. Approximately 40 percent to 60 percent of individuals with schizophrenia attempt suicide, and they are between 15 to 25 times more likely than the general population to die from a suicide attempt. Approximately 10 percent will die from suicide. […]
Public misunderstanding and fear contribute to the serious stigma associated with schizophrenia. Contrary to popular opinion, most individuals with the disorder are withdrawn and not violent. Nonetheless, the stigma of violence interferes with an individual’s ability to acquire housing, employment and treatment, and also compounds difficulties in social relationships. These stereotypes also increase the burden on families and care givers.6
Can we really go by these statistics? What kind of message are they sending? Rereading them now, I feel that the focus is once again on the negative impacts of the illness, eclipsing the rest: the individual’s strength, resilience and rich and complex personality. Do people living with mental disorders have any say at all over their civil rights? Do hospitalized psychiatric patients receive adequate and respectful care in terms of what they want and don’t want? Are they treated with safe, effective drugs that do not pose major health risks? Do they have a right to alternative treatment if they refuse medication? Do they have access to all the necessary information? Do the transitional housing placements offer a safe and abuse-free environment? Are there governmental bodies monitoring conditions in these supervised establishments? What preventative measures are in place to keep people safe and off the streets? Do we have the ability to adequately inform the public about the realities of living with a severe mental disorder without further stigmatizing the people living with them? What kind of support can we offer caregivers?
An article in Time magazine dated July 6, 1992, called schizophrenia “the most devilish of mental illnesses.”7 How can we call an illness “devilish”? Even specialists can’t agree on the definition.
In the Foreword to DSM-II, Ernest M. Gruenberg, M.D., D.P.H., Chairman of the American Psychiatric Association’s Committee on Nomenclature and Statistics, says “Consider, for example, the mental disorder labeled in the Manual as ‘schizophrenia,’ [...] Even if it had tried, the Committee could not establish agreement about what this disorder is” (p. ix). The third edition of the APA’s Diagnostic and Statistical Manual of Mental Disorders, published in 1980, commonly called DSMIII, is also quite candid about the vagueness of the term. It says “The limits of the concept of Schizophrenia are unclear” (p. 181). The revision published in 1987, DSMIIIR, contains a similar statement: “It should be noted that no single feature is invariably present or seen only in Schizophrenia” (p. 188). DSM-III-R also says this about a related (so-called) diagnosis, Schizoaffective Disorder: “The term Schizoaffective Disorder has been used in many different ways since it was first introduced as a subtype of Schizophrenia, and represents one of the most confusing and controversial concepts in psychiatric nosology” (p. 208). [...]
The Third Edition-Revised (DSM-III-R), published in 1987, says a diagnosis of schizophrenia “is made only when it cannot be established that an organic factor initiated and maintained the disturbance” (DSM-III-R, p. 187).8
As a leading critic of DSM-5, Dr. Allen Frances has denounced a tendency to see mental illness at every turn. In an article in Psychology Today, he cites a study that found that 81 percent of children “had already qualified for one diagnosis of mental disorder” by the age of 21.9 Dr. Frances also acknowledged responsibility for his role in fuelling three false mental illness epidemics (autism, ADHD and bipolar disorder), as J.-Claude St-Onge notes in TDAH? Pour en finir avec le dopage des enfants (ADHD? Let’s stop drugging our kids).10
As soon as Ferid stopped taking his medication, he started feeling better. He made the decision to stop four or five months after his first hospitalization, in spring 2010. Then began to emerge from a zombie-like state. Today, I thank God he did. My son accepted the hand he’d been dealt with a clear head. And it’s one thing I’m grateful for.
Ferid moved at his own pace. He never inconvenienced or attempted to harm anyone when he walked down the street. He was a gentle creature who didn’t like being told what to do. When we’d suggest adding anything to his routine, he’d gently decline. “Later,” he’d tell us, “when I’m feeling better.” We became accustomed to hearing this. He attended holiday celebrations and birthdays, calm and gentle as always, and picked out the most thoughtful gifts. It made him smile to see us happy.
Our worries remained, however dormant. An added challenge was that I was the only parent and sole caregiver. My daughter had a life of her own, and lived 40 kilometres out of town. She had a husband and new baby—her first child. Not being able to do anything for her big brother weighed on her, as did the little time I had to visit her, so she came to see us almost every week. I regularly declined her invitations to go to her home, under one pretext or another, even though she knew the real reason I kept saying no. When I would reluctantly agree to come for the weekend, I was always apprehensive, trapped in a vice of anxiety that inevitably turned to resentment at having to leave Ferid. It was a constant state of suffering. My work as a teacher, while it was demanding, also allowed me to compartmentalize different parts of my life and build up my armor. Though a teacher’s workload is notoriously heavy, it alleviated my constant anxiety. The boys’ father started visiting less often, for reasons we didn’t want to say aloud. I suppose he had a hard time understanding and accepting the kinds of problems Ferid was experiencing.
And then there was Adam. He was starting high school, and the transition came with its own challenges: a new school, new environment, new friends, constant pressure from his teachers. The teaching staff soon pegged his bubbly nature and constant need to move as attention deficit hyperactivity disorder (ADHD). Our family doctor prescribed Concerta (methylphenidate, also sold under the brand name Ritalin) with a single but significant warning: the drugs might stunt Adam’s growth. A lack of appetite was evident after the first few days—a bad sign from the beginning.
Aside from dependency, Concerta has a long list of side effects, including verbal tics, aggression or hostile behaviour, agitation, anxiety, nervous tension, lack of appetite or refusal to eat, hallucinations, signs of paranoid behaviour or depression, profound sadness, hopelessness, a feeling of uselessness, guilt, mood changes, risks to the heart and brain, growth suppression and weight loss.
Information varies online from one site to the next. For ample and accurate information, it is best to turn to solid scientific research on the subject.11
In the teaching world, I often hear colleagues or childcare workers causally make diagnoses about kids, even if the child in question has a minor problem that just needs personalized attention. Every time I try to get help for a student, I’m asked the same infuriating question: is the child medicated? It shifts responsibility onto the parents and also presumes parental fault.
Adam became a model student almost overnight, at least according to his teachers. He no longer disrupted the class, laughed, or made anyone else laugh. His grades improved. His weight plummeted. But we just had to accept that his growth would be stunted. I decided to stop his medication, bluntly letting his teachers and doctor know that if I had to choose between his grades and his health, the decision was obvious. And then Adam started playing soccer on a regular basis, and everything settled down. Each of us in our own way managed to overcome the traumatizing events we were living through. Adam was stoic when his brother died. He kept playing soccer, going to school and seeing his friends, but he also turned to video games as an escape, and his homework suffered.
Back then I’d arrive home late, where the housework awaited. Exhausted, I sought the help of a psychoeducator to help me manage my time and Adam’s homework. It was a difficult period, with all the worries piling up. I was constantly questioning my approach to dealing with each of my children, unsure if I was doing too much, if I was leaving them enough space to live their own lives, whether I was a good enough mom, if I was present or loving enough. I was in a state of psychological distress.
At times I’d go out and wander through the streets to escape from my looming fear of a future I could neither avoid nor control. Most times I’d park myself in the corner of a café, often at Place des Arts. I’d go there to try to forget my sorrows and put off facing reality. I didn’t like myself. I considered my life a failure and a disaster. I ruminated over the past, going over the darkest memories in slow motion in search of what might have led my eldest son, my baby, into such a dark, maddening place where no one could reach him. I couldn’t forgive myself. I knew Ferid’s childhood trauma, my unstable relationship with Majid, the repeated separations, having to leave his friends, the never-ending anxieties of a refugee family in its long search for asylum, and reaching his teen years and arriving in a new country were all significant factors in triggering his mental illness.
In a 2016 lecture on the effects of social determinants of mental health given at the Université de Sherbrooke, J.-Claude St-Onge notes:
According to the biomedical model, mental health is completely isolated from people’s lives, as if life circumstances and how we interpret them had absolutely no impact on behaviour and mood. Abuse and negligence, humiliation, bullying, grief and failure, poverty, social inequality, powerlessness, obstructions of freedom and desire, existential questioning, an inability to make sense of life’s blows… It’s the blind spot in biomedical thinking.
Numerous studies have shown evidence of this. Children who have lived through trauma are 2.78 to 11.5 times more likely to develop a psychosis, and every additional traumatic event elevates the risk by 240 percent (2.5 times). An article in the Archives of General Psychiatry notes that youth who have been sexually abused by more than one person have a risk that is 1,400 percent higher of a schizophrenia diagnosis, which DSM-5 has rebaptized the “Schizophrenia Spectrum.” Diagnosis of depression goes up almost 490 percent in the poorest households compared to the richest ones, and children of chronically unemployed parents are 400 percent more likely to develop symptoms of ADHD (hyperkinetic disorder) than children of professionals. In comparison, the C4 gene—related to synaptic pruning during adolescence—may increase the risk of schizophrenia by 25 percent. Added to the 1 percent considered a baseline risk, this brings it to 1.25 percent. To put that in perspective, smokers have an increased risk of 1,900 to 2,900 percent of dying of lung cancer.
Despite everything, I found hope somehow. I looked back on my own struggles with depression that punctuated my life. When I think back, it’s clear these periods of my life coincided with problems that proved far too much for me to handle or solve alone. But at the time I attributed the sadness and hopelessness to the choices I’d made and ignored the greater social factors. I was insecure, afraid of losing my job—a pattern that was well ingrained into our family’s history. Added to that was a feeling of inadequacy, of being different, the “other” who does not possess the same rights. I was the Algerian woman on the side of the road. My years spent in Algeria had held mixed emotions and I’d brought that bitter aftertaste to Vienna where, arriving as a refugee, I was the ignorant woman who didn’t speak German. It had made me want to disappear into the background, deeply ashamed that I was unable to offer my children a decent life.
The residue of this low regard for myself and inadequacy faced with life’s eventualities shaped the truth I held about myself: that I was a failure. Thoughts of suicide became a salvation at times, and the only power I held over my life back then. In La route de la dignité, I wrote about how I pushed down my pain, holding it there with all my strength to prevent it from harming the people I loved. I’m a survivor, so I believed in the power of nature, the promise of resilience and, above all, I felt safe living in one of the richest countries on the planet: Canada. Never did I doubt for a single second that this was the right place to raise my children. I trusted it to be true.
I’d received the help of my local CLSC (local community health services centre) 20 years prior. I’d first contacted SOS-suicide, where they advised me to go out and take a walk until I could get help the next day. Eventually the CLSC in one of my favourite neighbourhoods, Notre-Dame-de-Grâce, had a multidisciplinary team take charge of my case. The whole team was present and ready to help, and I felt it. They let me talk. I described my mental state, how I couldn’t keep going. The reasons were complex. It was the classic case of a struggling immigrant family. The long-feared rupture of a couple that had finally taken place. An 18-month-old baby who cried all night, eyes glued to the window where he saw his absent father in the faces of each passing stranger. Two teenagers whom I counted on too much. All on top of extreme poverty.
It was low regard for myself but also guilt, a lack of family support and the weight of taboos. I started considering the fastest way out. Ending it. But I couldn’t imagine leaving my children motherless. Their love is what held me back. I thought of how much harm suicide can cause. I pictured them without me, carrying with them a deep hurt they didn’t deserve. I might not have been worth much in my own estimation, but what would my death mean for them?
The CLSC provided help that worked. They assigned me a social worker and allotted me financial aid, since we were living below the poverty line. It wasn’t a lot of money, but it paid for me to put Adam in daycare while I looked for work. I started taking antidepressants, which alleviated the major symptoms of my depression. Therapy helped me see things in a different light and find new hope for the future. Soon after, I found a small teaching contract two days a week. I slowly rebuilt my self-esteem and began to feel I had a purpose. Without the support and empathy of the entire CLSC team, I don’t believe I’d be here today writing this. I took it for granted that the health care system in Quebec worked this way across the board.
The health professionals that I’ve had the chance to speak with about our experience paint a portrait of the psychiatric world as harsh, closed, inaccessible, terrifying… In a way, my son paid the price for my ignorance and trust in the system. Schizophrenia is not incurable, nor is it fatal. Far from it! But the lack of personalized treatment that considers a person’s uniqueness and their goals can prompt them to want to end it all.
1. Allen Frances, Saving Normal: An Insider’s Revolt against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life (New York: William Morrow, an imprint of HarperCollins Publishers, 2013), 21.
2. Thomas S. Szasz, Schizophrenia: The Sacred Symbol of Psychiatry, (NYC: Basic Books, 1976).
3. World Health Organization, “Schizophrenia,” https://www.who.int/news-room/fact-sheets/detail/schizophrenia.
4. Public Heath Agency of Canada, “Chapter 3: Schizophrenia,” Report on Mental Illnesses in Canada, October 2002, 49.
5. This is obviously one of many factors that leads young people with schizophrenia to commit suicide. Other factors including the stigma attached to the illness, limited or non-existant access to employement, a lack of alternative resources, isolation, drug side effects, inadequate care in hospital emergency rooms during episodes, etc.
6. Public Health Agency, Report on Mental Illnesses, 52–53.
7. Cited in Wayne Ramsay (a.k.a Lawrence Stevens), “Schizophrenia: A Nonexistent Disease,” http://wayneramsay.com/schizophrenia.htm.
8. Ramsay, “Schizophrenia.”
9. Allen J. Frances, “No Child Left Undiagnosed: The Latest Ploy to Make Childhood a Disease,” Psychology Today, April 12, 2014, https://www.psychologytoday.com/blog/saving-normal/201404/no-child-left-undiagnosed.
10. J.-Claude St-Onge, TDAH? Pour en finir avec le dopage des enfants, (Montreal: Écosociété, 2015), 25.
11. For further reading: Tous hyperactifs? by Patrick Landman (Paris: Albin Michel, 2015) and TDAH? by St-Onge.