Much Madness, Divinest Sense shares stories of women with mental illness

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One woman in Ontario feels her life has only barely begun at age 61, after spending much of her adulthood in psychiatric care and drugged for a hastily determined schizophrenia diagnosis.

Another woman in Nova Scotia digs deep to find her best self while sitting quietly with her daughter, who has psychosis, during a moment of deep despair.

And another in Saskatchewan learns that opening up about her struggle with depression was the best thing that happened to her as a medical-school student.

These are a few of the stories compiled by Ottawa medical anthropologist and family physician Dr. Nili Kaplan-Myrth in the new book, Much Madness, Divinest Sense: Women's Stories of Mental Health and Health Care.

Kaplan-Myrth has previously emphasized the importance of caring in medicine in the first book she co-edited, Women Who Care: Women's Stories of Health Care and Caring. In Much Madness, co-edited by Dr. Lori Hanson at the University of Saskatchewan, she examines the need for more compassion, empathy and thoughtfulness in treating patients with mental illness – particularly, she notes, for female patients who have historically been silenced and yet, more often diagnosed with illnesses, such as depression and anxiety.

Ahead of the book's Toronto launch on Thursday, Kaplan-Myrth explained to The Globe and Mail why creating a better mental-health-care system requires listening to women's stories of mental illness.

Why did you want to put together this book?

This was inspired both by personal experiences as well as professional frustrations with our mental-health-care system. As a family doctor, I spend my days making referrals for adults, youth and children to be seen for counselling for depression, anxiety, eating disorders, all kinds of things. Basically, I'm met with the response that "your patient isn't severe enough," or that they don't provide any trauma counselling. We'll be able to get our patients seen by a psychiatrist if they go to the hospital emergency department, but there are no psychiatrists in the community who do psychotherapy. And most of my patients can't afford $200 an hour for psychology.

The other thing our thing our health-care system offers is diagnoses and medication, but we don't really address the underlying psychosocial issues that contribute to mental health. That's extremely frustrating when I know it's poverty, hunger, lack of housing, isolation, discrimination, addiction, physical abuse, emotional abuse, sexual abuse.

And then, personally, I have experienced depression and have experienced some obstacles to getting the kind care that I need for myself.

I felt like we need to be able to tell people's stories and talk about their real experiences, both as providers of mental-health care and as recipients.

You mention that women's personal experiences with mental illness are not historically well documented. Why do you think that is?

If you look at the history of mental health, the people who decide what is madness and who define mental illness have largely been men. Michel Foucault, the French philosopher and historian, wrote about madness; before it [was] mental illness, it was deviance. That's very much a recent history, where women, if they're deviant, if they're unmarried and pregnant, if they're prostitutes, if they're outspoken, they're medicated, they're locked away in asylums.

So we took our cultural and societal assumptions about how the mind works and morality and sexuality and gender roles and we linked that together and came up with these diagnoses.

The idea that women are mentally unstable is still alive and well. We still treat women as though we're governed by our hormones. That disqualifies our voices. And as soon as you have a person who you've labelled as mentally ill, you're not going to give validity to them even if they argue against that label. That just proves they're unwell.

The other thing is we know women are much more likely to be diagnosed as depressed or anxious and to be medicated. I see men struggling with some of the same issues. But historically, there is a medicalization of women and a pathologization of women, which is why this book about women.

How does one start distinguishing women who are being pathologized from those who are struggling with medical issues?

The key thing is to actually listen to people's stories. There are absolutely situations where people are schizophrenic. There are absolutely situations in which medication is helpful. The difference is, though, I'm not interested in the diagnosis as an end point. As a family doctor, I'll spend an hour with a patient to find if that's what they need. I have that time to find out who they are and what's going on in their lives. If they also need an antidepressant because they're not functioning, that can be part of therapy.

But to only provide that, which is kind of what our system is set up for – you can have a psychiatric consult, where a psychiatrist will meet you once, give you a diagnosis and suggest medication – there is no human element to that.

These days, people often draw comparisons between mental illnesses and physical illnesses, which arguably helps reduce the stigma around mental illness. How might this do a disservice to patients, as the author of one essay in your book suggests?

In a way, we actually do need to treat mental health a little bit more like we treat physical health, in that we're not so dismissive. If you're a cancer patient and you go to your doctor and sit in the waiting room in tears and you say, "I'm struggling. I feel like I wish I could just die," that doctor is not going to pick up the phone, have the police come and handcuff you. You're going to be treated with incredible empathy and have all the support from friends, family, physicians. But if you don't have any physical manifestation and instead have inner turmoil, you're treated very, very differently. So we need to give more compassion to people struggling with mental health the way we do with physical health.

On the flip side of it, when we put a lot of emphasis on biology and physiology, we lose people's stories. If we're saying, "It's just something wrong with that person's brain chemistry," and we're just trying to make designer drugs to treat them, that's great for the pharmaceutical industry, but it's not great for people. What happens is all our funding and emphasis swings to the bio-, neuro-model of mental illness. What about violence at home or poverty? All of that kind of stuff gets forgotten.

How has being a patient affected your work as a physician?

It's made me passionate about wanting to ensure that I provide a safe space for people. I've been lucky to have had some fantastic doctors in my life. For me, if I'm telling somebody my own story, it needs to be to people who I could trust to really tell what's happening with me, what I'm feeling, what I'm thinking and to know they're going to be non-judgmental and compassionate and respectful and that they're going to treat me like I'm intelligent and that I know about myself. That's what I feel every person should be able to have.

I've had medical encounters where if some doctor treats me some other way, I just get up and leave. I don't put up with it. I won't put up being treated badly for me, so I won't put up with it for my patients.

To be real with patients, I think, is also important. Of course, we have to have our boundaries. But, as physicians we're humans. I've found it's much easier to relate to doctors who don't try to act as if they're some kind of automaton.

You mention all the other psychosocial factors, such as lack of housing, poverty and domestic violence, that contribute to mental-health problems. How can physicians and other mental-health professionals tackle these issues?

At a system level, we have to fund psychotherapy. At an individual level, as health-care workers, we need to look at the ways in which we create dehumanizing experiences. For example, taking away people's clothing and shoes and replacing them with hospital gowns is not a great start. Averting your gaze and not looking into people's eyes? Not a good start.

So there are some things we can do in our clinics, in hospitals and in our practices to make people feel less vulnerable and less stripped of their dignity. A psychiatrist I met once said people know themselves better than any psychiatrist who's just met them. So it's letting people feel they are the experts in their lives and having less of a doctor-knows-best hierarchy and having a more collaborative approach.

It's creating a positive space. My patients sit in a couch across from where I sit, but there's no desk between us, so we're having a conversation as two human beings, as opposed to me being detached and coming in in a white coat. So it's the physical environment, it's the way we address people, the language we use and not rushing them through.

How are you able allocate a full hour to patients if they need it?

I just do. As a solo family doctor, I'm fee-for-service, which means, if you come in to see me and I spend 15 minutes with you for strep throat, I'm paid $35. If I spend a half hour with you, I'm paid $65 for counselling. If I spend an hour with you, I'm paid $120. We're paid a lot less than psychologists, but we have codes we can bill for counselling.

Often what happens in my day, there are some patients who come every week for whom I am their therapist and I can book that in my schedule. So I'm making the choice to see one person for that longer period of time rather than see more patients. We do have a doctor shortage so that makes it harder for other people to see me if they have a sore throat. But I think it's really important.

Then, I have patients who call in to renew their medication. So I'll have them booked for 15 minutes, but when they come in, they burst into tears and tell me their father is bi-polar and is right now somewhere traipsing around in Europe, that 15-minute appointment becomes a 45-minute appointment and everybody is in my waiting room.

My own family doctor who does the same thing has told me over the years, people who don't want to wait have kind of left his practice and went elsewhere. But people appreciate if they have an issue, I will stop what I'm doing and will literally turn to them and say, "What's going on?" That's the trade-off.

People will wait happily for 45 minutes if they're waiting at a restaurant where they want to eat. They can wait 45 minutes in my office if that's what they need to do so I can spend the time if somebody is in crisis.

They also know I'll take the time and advocate for them. I write letters for workplaces or if someone is living with city housing and they have asthma and are struggling because there's mould in the walls, that appointment, which might have been booked for half an hour might end up taking an hour. You can't just give someone a puffer. We need to make sure that everything the patient needs is addressed.

This interview has been edited and condensed.

The Toronto launch of Much Madness, Divinest Sense takes place 7:30 p.m. Thursday at Another Story Bookshop, 315 Roncesvalles Ave.