GENEVIEVE SIMMS

Edge of the Edge

Mental health care, neglected.

By Clem Martini

You wake up. 

You’ve received a phone call. Disoriented, you fight sleep and attempt to make sense of what the voice on the other end of the line is telling you. You discover that your son/daughter/brother/sister has tried to kill his/herself. There’s blood. Pills. You should come immediately.

There’s a hurried race through darkness to the hospital. On a gurney sprawls a limp, cold, familiar body made suddenly terribly unfamiliar by deep, disfiguring cuts. For a period of time—a long, tortured period—you understand that death is possible, perhaps even a likely outcome. You’re horrified. Stunned. Hurt. Confused. Angry. Angry. Crushed. Sad beyond measure. You’re all those things at once. Nothing seems to make sense. Nothing seems to connect this bloodied image to the person you know. Knew.

Doctors struggle through the night to repair the damage. The stomach is pumped. Tests are administered to discover the nature of the drugs taken. Shallow cuts are bandaged, deeper cuts stitched. There will always be scars. A drip is hooked up and intravenous drugs administered. The days pass. Slowly, slowly it seems recovery becomes possible. As the patient stabilizes she/he is transferred to the psychiatric ward for assessment. You feel some faint hope. You feel you will have someone to help you. An advocate. A guide. Someone who can help you comprehend the situation, someone who can help you fathom your son/daughter/brother/sister. Someone to help you repair things.

But that’s where you’re wrong. The assessment comes back as Borderline Personality Disorder. The patient is not kept in for treatment. Instead you’re made to understand that the hospital offers no particular treatment. A provincially funded clinic provides therapy, but there’s a six-month waiting list. In the meantime, there will be no assistance. Your son/daughter/sister/brother is released into your confused and thoroughly uninformed, unqualified, unprepared care. 

And you’re informed that, no, the Mental Health Act of Alberta, which permits involuntary detention and admission to a hospital for examination and treatment against an individual’s will if their life appears to be at risk, cannot be applied—because the diagnosis is Borderline. And no, there is no answer about what you are to do for the next six months until a therapy session can be scheduled. And no, there is no answer to the question of what is to be done in the periods between those weekly hour-long sessions of therapy, of what to do when she/he gets too anxious or angry or frightened, or what to do if the patient refuses to attend therapy. That is over to you in your household. And when she/he next tries to take their own life, the turnaround at the hospital will be quicker, and she/he will be out on the streets to find help—or not—somewhere else. Unless of course, she/he carries it through next time. After which there will be no next time.

So much of mental health care is downloaded to families that the real costs can never be truthfully tallied.

Bienvenue to a world on the very edges of healthcare. Psychiatric care exists on the periphery, receiving the minimum of support, attention and hospital resources to begin with. This is acknowledged time and again in reports generated from within the medical system itself, year after year. “Mental health care is the orphan of the healthcare system.” “Marked socioeconomic disparities were found in the use of care from a psychiatrist. Unlimited coverage of physician-provided mental health care is insufficient to fairly distribute services to those most in need.” “A major criticism of mental health services and supports and addiction treatment in Canada is that it is largely organized around (and often for the convenience of) providers, not patients/clients.”

And Borderline Personality Disorder (BPD), the ugly duckling of the mental health care system, exists on the very furthest edge of that edge. Mistrusted. Misunderstood. Unwelcome. In a recent medical review, BPD was characterized as “a suspect category, largely neglected by psychiatric institutions, comprising a group of patients few clinicians want to treat.” That sense of its being a “suspect category” is reflected even in the initial definition and description listed by the National Institute of Mental Health (NIMH) in its explanation of the disorder, and provides an indication of how individuals diagnosed with the disorder can expect to be viewed. Although that description states that BPD was “originally thought to be at the ‘borderline’ of psychosis,” in fact, people with BPD suffer from a disorder of emotion regulation. It goes on, however, to state that BPD is “less well-known than schizophrenia or bipolar disorder.” That sense of unfamiliarity, of being “less well-known” and a relative newcomer to the diagnosis lists places the disorder in a category all of its own.

Significantly, the NIMH explanation then goes on to state that “there is a high rate of self-injury without suicide intent, as well as a significant rate of suicide attempts and completed suicide in severe cases. Patients often need extensive mental health services and account for 20 per cent of psychiatric hospitalizations.”

So, to sum up: this disorder, which falls within a “suspect” category and is “less well known,” also requires considerable attention at the emergency level of hospital care—where notoriously few resources are allocated for the mentally ill patient. And BPD also requires additional in-care hospitalization support, at a time when every effort is being made by hospital administrations across the continent to outsource mental health treatment. This confluence of circumstances can only spell trouble for BPD clients and their caregivers. 

So, for instance, in a situation such as one in which the person has tried to kill themself and is likely to try again, and the hospital won’t keep her/him in for observation and treatment, let us try to determine what precisely the medical establishment believes a parent or family member or friend is supposed to do. You can wrestle and physically restrain the individual to prevent them from doing themselves harm—although technically, unless you can absolutely prove that self-harm is imminent, that could be viewed as assault. You can call for assistance from a special emergency care unit, which would upon arrival hold an intervening conversation with the client—knowing that the client might simply listen, play along and feign agreement until the emergency unit had gone, and then attempt suicide once more. Or you can allow the person to carry on as they had, knowing they might end up dead.

Often when dealing with loved one’s illness, you will not only be the first but the second, third and only aid.

How is it that BPD warrants this kind of hands-off response? Partially, it suffers from being “new.” It only appeared on the radar at the end of the 1960s, and only recently has begun to come into any kind of clear diagnostic focus. The disorder, characterized by impulsivity, chaotic relationships, instability of emotions, blurred identity and a propensity for self-violence, was first described in the 1970s when it was found to fit into neither the neurotic nor the psychotic category, and so was simply labelled as “borderline personality organization.” It didn’t appear to respond well to classical psychoanalysis and it didn’t respond consistently to neuroleptic drugs. In fact, as one researcher commented, “It was commonly believed to be a ‘wastebasket’ diagnosis, lacking in diagnostic precision and validity, and only useful for patients who did not fall clearly into other diagnostic categories.” In psychiatric circles, BPD became known as a “troubled diagnosis.”

So Borderline is a recognized mental disorder, yes, but a very particular recognized mental disorder. It appears to have a high degree of “heritability,” confirming the likelihood of its being a brain disorder. Nevertheless, discussion continues in the psychiatric world about how much the disorder is affected by psychosocial and environmental influences. The most successful treatments for BPD at this point appear to be Dialectical Behaviour Therapy and Mentalization Based Treatment, techniques that involve continued group and individualized therapy components. However, perhaps because these treatments are relatively recent phenomena, and perhaps because BPD has yet to find its way into the psychiatric training curricula, these treatments are almost impossible to obtain through public hospitals. As one research article noted, “Appropriate teaching—both academic and clinical—for residents is non-existent in all but a few institutions.” 

Not long ago I enrolled in a program titled Mental Health First Aid, which offers the layperson a kind of fast recognition and first treatment for mental illnesses. It was modelled upon the standard first aid program that was so successfully developed to deal with physical emergencies.

The philosophy informing the program was that laymen with a little information could offer the necessary immediate intervention that would allow the mentally ill patient to survive in the short term until more informed, better-trained treatment could take place. In the world of physical medical emergencies, this makes complete sense and has given rise to a variety of procedures meant to keep the patient alive and well—CPR, for instance—until better informed, better prepared medical resources are made available. The problem—and where the “first aid” parallel begins to fall off the rails—is that too often when dealing with mental illnesses, you will not only be the first aid but the second, third and only aid. You may very well bring a person to the hospital, but after that the situation may be bounced back to you, along with the responsibility for caregiving. 

The carelessness of these actions is staggering. It’s worth noting that the majority of suicides don’t occur in medical facilities. They occur elsewhere, back in the homes of caregivers struggling to make sense of the situation. They happen in the living rooms, basements, attics, washrooms, bedrooms of caregivers who have often requested assistance and received none. And consequently, when deaths occur, the responsibility is theirs. And the pain and long-term struggle to cope with ensuing guilt will also be faced alone. 

I refrain from citing any specific individuals, because I understand that even writing about a specific individual who has received the BPD diagnosis carries risk. It carries risk because the diagnosis is sufficiently stigmatizing that sharing names and identities can have implications for the social, educational and occupational aspirations of the individual diagnosed with the disorder. It carries all kinds of troubling baggage—of being antisocial, unco-operative and terminally troublesome. 

Which is, after all, kind of true of the response the general public has for all mental illnesses. To even discuss mental illnesses is to be viewed as potentially damaged. I have in the past written a number of articles about mental illness and that has been enough for some people to assume—to say to me—that they can tell that I’m troubled as well. That’s the way it is with mental illness. Even talking about it carries stigma. 

I had one person who had the—let’s call it temerity, because that’s more polite than stupidity—to tell me to my face that after reading my book Bitter Medicine that by simply looking at me they could tell that the mental disorder my younger brother died from and that my older brother struggles with, was probably my disorder as well. That’s they way it rolls with mental illness. You are tarred instantly by proximity. 

Do you want to know the truth about the difference between mental illness and illness? There are two truths of considerable importance. The first is the Truth of Cost. The incidence of mental illness is surprisingly high, but the amount of federal healthcare funding allotted to individuals with mental illnesses is disproportionately low. The mentally ill have been squeezed out of the healthcare system so successfully, the costs eliminated so triumphantly, that the prison system has become one of the principal “treatment centres” in the country. The mentally ill are incarcerated every day because of their crazy, criminalized behaviour. And so much of care has been downloaded onto families that the actual hard costs associated with caregiving can never be truthfully tallied. 

The other truth you should be aware of is the Truth of Fault. If you end up in the hospital with a ruptured appendix, nobody will ask “Why have you come here?” Or demand “Go heal yourself.” But mental illness is so steeped in fault that even those in the helping professions can’t see how they contribute to continuation of the cycle of blame, guilt and shame. You’re too weak, they imply—go home. You’re taking up time and beds and resources that might more profitably be devoted to those with genuine illnesses. 

And if the patient is too delusional or troubled to be blamed directly, then that blame can swiftly and easily be transferred to the family. You raised them wrong. You raised them badly. You raised them inappropriately. You spoiled them. You were too strict. You didn’t demonstrate love. You didn’t demonstrate love the right way. You messed up. 

And if that fault for the illness can be shifted, then of course it only follows that the costs for treatment should revert back on the people who are responsible. Pursuing this logic, it makes perfect sense not to allocate sufficient funding for mental illnesses in the public healthcare system nor to provide adequate support for it. After all, the prevailing unspoken subtext is “It’s your fault, suck it up. Don’t feel so sorry for yourself. Everyone has a bad day, just don’t kill yourself”—or conversely “It’s all your fault; if you had raised your family correctly they wouldn’t try to kill themselves, starve themselves, cut themselves, burn themselves, exhibit odd behaviour, exhibit violent behaviour, exhibit self-harming behaviour. They wouldn’t weep all the time, they wouldn’t talk to themselves, they wouldn’t throw themselves off bridges, they wouldn’t step in front of cars, they wouldn’t be so, so, sooo damn crazy.”

But there they are. And they do try to kill themselves. And if left to their own devices, they succeed with numbing, relentless regularity. One million people die through suicide worldwide each and every year. That’s about two a minute. People find strange comfort in believing that mental illness is the illness that happens elsewhere, in other countries, other cultures, other households. This comfort is an illusion. According to Health Canada, 20 per cent of Canadians will personally experience a mental illness in their lifetime. Suicide accounts for 24 per cent of all deaths among Canadians aged 15 to 24. This could be your child. This could be your brother or sister. It could very easily be someone you love, and if it is, then one night you may be confronted with a realization and a decision. When the phone rings, or the door knocks, you will be startled out of the fog of deep sleep, and you will be presented with the dilemma of what to do next.

You wake up.

Clem Martini is an award-winning playwright and head of the Department of Drama at the University of Calgary.

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