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A voice within me that will not be still


A voice within me that will not be still

The crisis of mental health care seen through the experiences of a suicide survivor

CONTENT WARNING: Graphic description of self harm

An unexceptional 16-year-old kid from south Guelph lost his sense of self, and it would be several years before he found it again. It wasn’t taken from him; he was complicit. He was diagnosed with bipolar disorder and soon after was unable to distinguish himself from the disease.

His moods, both mercurial and morose, belonged to the disease. He equated his insecurities with his illness; he felt broken, ostracized from friends, and unequal to others. There was never a question as to whether or not these feelings were justifiable. He was lucky, although it never would have occurred to him.

At some point, perhaps because the misery was too great, perhaps because he had no other solution, or perhaps to prove that he had the balls to do it, he swallowed a bottle of Lithium, chased it with a bottle of Celexa, and went to bed. Without much thought to anything, certainly without a thought of how this event would shape his life — or lack of it — he slept.

He threw up. He lived.

The next day, he was driven from general hospital to psychiatric hospital in police handcuffs. Under the law, the nearest psychiatric hospital was required to hold him for 72 hours without cost. He spent three days without shoelaces, doors to close, or unsupervised showers, before being moved to the closest OHIP-covered mood disorders ward, which was a full hour away from his home by car.

This would not be the last time he would be hospitalized, but it was the first. For roughly a month, the kid was surrounded with beauty and suffering in equal measure. The empathy, understanding, and compassion he received from the other patients, whose own suffering at least matched his own, staggered and moved him. For the first time in longer than he could remember, he was somewhere where he belonged, somewhere that extreme sadness was not met with disdain. Life was regimented. Everyone was roused at the same time each morning, meals were served at regular intervals and eating was required, nurses checked in on patients every 15 minutes, and psychiatrist visits were daily.

The relationship between absurdity and suffering was always present. The mood disorders ward and the schizophrenic ward went bowling every Wednesday, where they were given half a bowling alley when they only needed two lanes. There was a ward vs. ward volleyball tournament that would have been comical if the reality wasn’t so tragic. One patient lost her legs because she had attempted to commit suicide by placing the wrong half of her body on the train tracks; another patient in the throes of mania managed to escape the locked ward three times in the same week; and the giant-of-a-man who was shy, patient, kind, and soft-spoken screamed himself to sleep every night.

Staying too long in an institutionalized health care environment can have adverse effects. By the time he was discharged, the kid no longer wanted to leave. He was gripped with crippling anxiety about the outside world but was assured that the outside world was the one he actually belonged to.

It wasn’t until I was in my early twenties that my sense of self returned to me.

My mood was still unpredictable and episodic. A couple of times I had to go to the emergency room to sew up self-inflicted gashes on my arm, but otherwise, my twenties were fairly typical. I was in and out of psychiatric care — I stopped going when I felt better and picked it back up when I felt I needed it.

Far from where it should be

I look back at the years of fighting my disorder and the stigma and intolerance that I directed toward myself, and I remember mostly suffering. Any other feelings I ascribe to this period of time are revisionist history — they didn’t exist then, they couldn’t. I was trapped in societal attitudes towards mental health that I adopted and then crucified myself with.

When I was a teenager, I had immediate access to treatment. I was exceptionally lucky because there were a number of factors that enabled me to get access to care quickly: I was a minor; I agreed to take part in a five-year study; my father was already registered with a psychiatrist at the hospital I was admitted to; and I had seriously attempted to kill myself.

But access to care now has been much slower. Over the last year, I have been living through what was at first a comparatively mild depressive episode. It took me seven months of referrals and waitlists to see a psychiatrist, in which time my mild depressive episode gradually grew worse, to the point where the discussion of another hospitalization is now on the table. I can’t help but feel that if I had seen someone months ago, when my symptoms were much less severe, my quality of life would have been significantly better.

Access to mental health care in Ontario is far from where it should be. I was able to talk with Professor Benoit Mulsant about access to such care. Mulsant is the Psychiatrist-in-Chief at the Centre for Addiction and Mental Health (CAMH) and the Chair of Psychiatry at U of T. He said that at any point, at least 20 per cent of the population needs access to mental health care. In Toronto, that is roughly 1 million people.

Mulsant stated that there are roughly 2,000 psychiatrists in the GTA, each of whom, on average, can accommodate only 2,000 visits a year. That means for the 1 million people who need care — right now — there is a hypothetical maximum of only 600,000 patients who could receive visits for the whole year. This exemplifies why the wait times are as long as they are. Mulsant believes that even doubling the number of psychiatrists would not meet the need.

I also spoke at length with Steve Lurie, the Executive Director of the Canadian Mental Health Association (CMHA) Toronto Branch, which is the largest community-based mental health agency in the country. I asked him whether access to care barriers could come down to governmental funding.

Disease burden is a widely accepted statistical tool that is used to determine the impact of a disease on a community, and according to Lurie, “Every year in Ontario there’s a $1.5 billion shortfall in unmet need for mental health and addiction services based on disease burden.”

Lurie hypothesized, “There’s no health minister in the Western world who would stand up in the legislature, or parliament, and say, ‘You know, it’s okay, we’re meeting the needs of 30 per cent of the people’ — but that’s the statistic [in Ontario] in mental health.”

David Jensen, a spokesperson for the Ontario Ministry of Health and Long Term Care, explained that in 2015–2016, “$3.7 billion was invested in mental health and addictions services” in Ontario. To give you an idea of what this breaks down to, the government is setting aside $16.45 per person to use this year on mental health.

Lurie believes that inadequate funding is linked to structural stigma, an institutional practice that perpetuates discrimination or prejudice toward a particular population. “It isn’t mismanagement, it’s the lack of political will,” he said.

The cost of underfunding

The prevalence and power of this stigma is appalling; a report released by the CMHA called More for the Mind  stated, “In no other field except perhaps leprosy has there been as much confusion, misdirection and discrimination against the patient, as in mental illness… Mental illness, even today is all too often considered a crime to be punished, a sin to be expiated, a possessing demon to be exorcised, a disgrace to be hushed up, a personality weakness to be deplored or a welfare problem to be handled as cheaply as possible.”

[pullquote-default]The relationship between absurdity and suffering was always present. The mood disorders ward and the schizophrenic ward went bowling every Wednesday, where they were given half a bowling alley when they only needed two lanes. There was a ward vs. ward volleyball tournament that would have been comical if the reality wasn’t so tragic.[/pullquote-default]

Unfortunately, this stigma appears to characterize the government’s response to mental health care in Ontario. Despite the facts that: by the age of 40, one in two of the population will have suffered from a diagnosable mental illness; suicide is the leading cause of death for people aged 1–24 in Canada­; the World Health Organization suggests that 13 per cent of the world’s disease burden is a result of mental illness; and in Canada, mental illness has a disease burden 1.5 times that of cancer and heart disease combined and seven times that of all infectious diseases, Jensen indicated that “approximately 7.3% of Ontario’s health care budget is allocated to mental health care.”

These statistics and the effects of this underfunding are not just numbers that don’t seem to add up. When we discuss the cost of underfunding mental health care, we are talking about human beings who are suffering, who are homeless, who don’t have the ability to realize they need help — and we are failing them.

In light of underfunding and the resultant limitations on access to care, Mulsant talked about the unfortunate but necessary reality of determinations that decide who does and does not merit psychiatric care.

For those that may not get to see a psychiatrist, Mulsant described those who are “distressed, they are affected but not impaired… That doesn’t mean that they don’t need care, but you understand they don’t have the same level of severity or emergency.”

He included in this category people with generalized anxiety disorder, mild eating disorders, and mild substance abuse. He also included people who are cutting themselves.

Yet, when you cut yourself deep enough, blood is not the first thing you notice. Your skin is exceptionally taut, and cutting through live tissue is not the same as cutting into a moist chicken breast. Your skin splits, widely, much wider than the blade of the knife that just slid through your flesh. It is almost as if your skin is spring loaded. It recoils. The gash in your arm looks white and splotchy for a split second before arterial spray begins to cover your kitchen. People often ask about the scars on my arms that are far too straight to be accidental. I’m not sure they want to know.

This is the type of behaviour that may fall through the cracks of our healthcare system.

Even for patients who are unfortunate enough to require hospitalization but lucky enough to receive care, the level of care they can expect in hospital is not equivalent to that of a general hospital. Mulsant said that on any given night, there are up to 100 inpatients at CAMH and each of them have to share a bathroom with six or seven other patients.

“There is not one general hospital where people get hospitalized for pneumonia where you have 7 or 8 patients sharing a bathroom.” He also noted, “There is no gift shop at CAMH. You know why? Because it would not be viable. People get admitted but the family don’t visit.” This type of dehumanization is not just systemic; it is just as prevalent in individuals. Psychiatric hospitals are not frightening, and yet loved ones are still averse to visiting.

When I went to CAMH to speak with Mulsant, I thought little of it. I hadn’t been to the building in over 20 years. It was called the Clarke Institute then.

However, the lobby was close enough in appearance to send me reeling back to my seven-year-old self. My father also has bipolar disorder, and after a period of sleeping on the floor in our hallway trying to avoid his psychotic nightmares, he was hospitalized at what is now CAMH. I remembered thinking my father was ‘retarded.’

I didn’t have the words to describe what I didn’t understand, nor did I have the prescience to realize that in less than 10 years it would be him visiting me. I was afraid of the man I loved and trusted more than any other, and I was angry that he wasn’t that man anymore. I didn’t want anyone to know my father was ‘retarded’ —  even at seven I was capable of incredible acts of selfishness.

I’ll admit, I visited him only once.

Less entitled to good health

Nevertheless, the Ontario government appears optimistic. They plan to invest $140 million dollars over three years to fund a structured psychotherapy program, nine integrated youth service hubs, and 1,150 new supportive housing units across the province.

Yet, the $140 million is nowhere near the $1.5 billion in unmet need cited earlier. Lurie said that even if 1,000 new supportive housing units were all put in Toronto, they would alleviate the wait list by only 400 people for a single month.

Jensen also favourably mentioned the Patients First: Action Plan for Health Care, which is a comprehensive healthcare package, not a targeted initiative aimed solely at mental health care. It’s not that the government is doing nothing; mental health care funding has gone up $180 million since 2011, but they still aren’t doing enough.

Lurie emphasized this point: “Two budgets ago, the Ontario government said we’re [going to] give [hospitals] $11 billion over the next 10 years… That was a smart political move, because people like to get a brand new hospital. But the reality is that it actually adds, in operating cost every year, 1.1 billion dollars to hospital spending. When you compare that to basically 60 million dollars a year to community mental health, it doesn’t quite equate.”

It could be argued that the investment in hospitals would benefit mental health care, but many promising innovations in mental healthcare are community-based initiatives designed to keep people out of the hospital system — period.

If health care providers were afforded it, Lurie said, “We actually know what to spend the money on.” This claim is substantiated by evidence-based programs.

Among the programs with proven results is the Assertive Community Treatment (ACT) model, which employs a multidisciplinary team designed to provide out-of-hospital treatment to patients with severe symptoms who often have concurrent problems like homelessness. ACT programs have, on average, taken patients who spend 50 days in hospital down to spending 23 days after a year, and only 10 days after six years.

Another program with proven benefits is Bounce Back, a series of DVDs and workbooks designed to teach coping skills to patients with mild to moderate depression and anxiety. The cost is $500 per patient and at least half of the patients show remarkable improvement.

“If you have access to case management or supportive housing you have maybe a five per cent chance of being admitted to hospital. That’s pretty good. When, without it, if you have a concurrent disorder, and you’re homeless, you got a 90 per cent chance,” said Lurie. “There is no excuse for not making these adjustments. The only excuse is we’d rather spend [money] on something else, and despite our rhetoric we just don’t think mental health is important.”

When I asked Jensen whether Ontario is doing everything it can to combat mental illness, he neglected to answer my question. I’m inclined to believe that it would have been a very difficult question for him to honestly answer ‘yes.’ Frankly, if that is the case, the government should be ashamed.

I am no less a person because I have bipolar disorder, but from everything I know and everything I have experienced, I am less entitled to good health in this province because I have bipolar disorder. Whether this stigma is structural or personal, don’t fool yourself: stigma is just another word for intolerance, discrimination, fear, and hatred.

The inequity of mental health care in this province due to stigma is unacceptable, and people, myself included, suffer because of it. By not receiving the proper mental health care, every aspect of my quality of life has suffered — my personal relationships, my studies, my work, and even my ability to write this article.

I don’t want ‘acceptance,’ because I have done nothing wrong to require acceptance. Instead, I offer my acceptance to those who are in the wrong — those who think I am entitled to less because of my illness.