2004 Annual Meeting Presentation

The George Hull Centre Annual General Meeting
June 14, 2004

Guest Speaker: Ellie Tesher, Advice Columnist, The Toronto Star

Surmounting the Stigma of Mental Health Problems: Shedding Stigma for Self-Esteem

About six weeks ago, something happened to me that got me to thinking about speaking to you today, something that gave me a sharp and very personal focus.

What happened was, I felt suicidal.

That’s not a word I use lightly and I know that none of you ever hear it lightly.

So let me explain; it was a time – and still is – when my work life and personal life were both at a lovely faze of pleasure and success. There was nothing whatsoever going wrong. Even the weather was fine and sunny.

Yet there I was frequently weeping, unhappy, and feeling hopeless. Worse, I was unable to snap out of it.

This was completely unusual for me. While I’ve experienced a few low periods, I’ve spent much of my life making sure I knew how to get out of them quickly. So when this deep gloom enveloped me a second day, and a third, I knew something internal was very wrong. And I was horrified to realize I was actually saying to myself, “Oh, now I know why some people commit suicide.”

Fortunately, it was easy for me to think of a likely cause for all of this. I take a very mild form of hormone therapy and since that effects my body chemistry - which is undergoing it’s own changes - I figured out where to turn first.

Fortunately too, I have a gynecologist who allows me to contact her easily, and who returns calls.

And most fortunately, I learned long ago the value of communicating instead of hiding in fear of stigma.

My doctor responded, advised a medication, saw me within a few days, and changed the hormone regime. And now I’m here today looking forward to my daughter’s wedding this Saturday.

Most of you here already have involvement with the field of mental health, and many of you speak out frequently about the needs.

I’m going to make a guess, that many of you have also had very personal involvement with mental health issues — either yourselves, or through family and friends in that circumstance.

And I’m also guessing that talking about your own or loved ones’ problems comes much less easily (especially if, unlike me, you don’t go around making speeches about it).

We all know why we cover up our troubled minds.

There still exists a stigma — some would call it shame — around having a mental illness, suffering from depression, or having experienced even one manic incident or suicidal urge.

The stigma isn’t new. People were once burned at the stake for odd, or different behaviour.

What’s new in this otherwise-information age is the confounding persistence of stigma, which silences mental health openness, and its impact on people’s lives. Stigma is so pervasive that the 20 per cent of the population who are directly affected by mental disorders, have to struggle not only with their illness but with the terrible burden of ostracizing labels that follow them into their workplace, or when they need bank loans and insurance, and in many social situations where people whisper about their stories. And although 80 percent of the population will be affected in their lifetime by a mental illness in family members, friends or colleagues, being publicly outspoken about personal and loved ones’ mental health needs and experiences is still the exception. You’re expected to “handle it” in silence. That message is made clear at every turn.

It was brought home to me very recently by the tragic end of a woman I had worked with on a special project, just a year ago. Kate MacDonald was a gorgeous and talented, highly succesful magazine editor. Beloved in the glamorous and high-energy world of the international fashion press, she was also a married mother of three young sons. Yet she took her own life last April at age 43.

Very few of the glowing tributes to her which I heard and read for several weeks afterwards made more than the briefest mention of her long struggle with depression. Or how her doctors, family and friends may have tried to help her. I felt that not only her depression triumphed but so had stigma.

Yet think about the progress in attitude towards other health areas that were once shadowed by embarrassing stigma.

Cancer: The disease was barely whispered about a generation ago. People assumed the patient would die from it, so didn’t talk about the situation in which these people were living.

AIDS: I remember when Bluma Appel, a pioneering AIDS activist in this city, first approached bank CEOs for support. They either tried to avoid the meeting or whisked her into their offices behind closed doors, lest anyone hear what she was there to discuss and associate them with the disease.

Eventually, she got all the major banking institutions to fund research projects, as they recognized the terrible effect on a community, not to mention the loss of spending potential from AIDS patients.

But what of mental illness? Well here’s some more of my personal history to illustrate how far we haven’t come.

My mother had two children. After the first, my brother, she suffered a post-partum depression. The doctors obviously knew what it was, since I grew up hearing that term. But their treatment was a different matter. One day, she refused to breast feed her baby. My father, a highly gentle man, was nevertheless instructed to slap her in the face to shock her out of it.

After I was born almost six years later, she suffered another postpartum break. It was only after she died two years ago at 88 that her best friend told me SHE had practically raised me as a baby, and was always on call for the many days when my mother couldn’t cope.

My childhood was a series of unpredictable, chaotic moments…I never knew when my mother couldn’t take my curious mind and questioning anymore, and would lash out at me, verbally or physically. She once pushed me into the fridge door handle so hard she winded me and I collapsed. When I came home from school, there’d be the breakfast dishes on the table, alongside some of last night’s dinner dishes…and Mom still in disarray in her nightgown, edgy and disturbed by my presence, often nursing a migraine headache. My father tried to help me understand that she was troubled, rather than intentionally abusive. But it was often too late, after one of her outbursts.

And no one was treating her effectively enough to get better, enough to restore her self-esteem and help her be the mother she really wanted to be.

In all, the poor woman suffered five nervous breakdowns, some even after both kids had married and left home. She ended up having shock treatments during one hospitalization, her psychiatrist telling me crudely that he was “zapping” her, and not to bother visiting, since, he said, her relationship with me was of no importance to her.

Perhaps it was a blessing that early Alzheimer’s hit her by her early 60’s, and she lived some 20-plus more years with little memory of her former anguish, existing in a fog of confusion in which she became sweetly docile, and always kissed and hugged me hello and goodbye, though she forgot who I was.

I have no doubt that I became a writer with an interest in social injustices and health care, because my young life made me an observer of such an unfair affliction, one which was so socially unacceptable.

Today, writing an advice column for the Toronto Star, I have the same interest in cutting through people’s problems, in talking common sense and encouragement, in helping raise their self-esteem so that hopefully, it helps them take the action and seek the right resources to improve their lives and their close relationships.

But I still see people in the same murky battle my mother endured.

Almost seventy years after my mom’s first bout of post-partum depression in 1936, it still carries a stigma in many minds. As many of you will recall, in August of 2000, Suzanne Killinger-Johnson, a bright and successful physician and psychotherapist ran out of her house with her son, 6-month-old Cuyler in her arms, and drove to a subway station. This was her third such foray since the previous night. Third time successful, if you can call it that.

She jumped in front of a train, baby in arms. Cuyler died instantly, the young mother, described as a woman with “a lovely picture-perfect life,” was severely injured and died eight days later.

She’d been diagnosed with post-partum psychotic depression, the most severe form affecting about one in 1000 women who give birth. It can entail schizophrenia, psychosis and manic episodes, hearing voices and delusions. But patients can mask symptoms.

They mask them, because they believe to not do so is to be seen as a failure.

Many of you will recall the stunning ironies; treating depressed patients was Dr. Killinger-Johnson’s specialty, something she was already supposed to know all about. Her mother is a world-renowned clinical psychologist and authority on balancing work and home life, the very challenge her daughter now faced. Her father is also a doctor.

She was, at the time, awaiting admission for psychiatric treatment. But she refused to take her medication because she feared it would harm the baby she was breastfeeding. She found her chance to steal away for the desperate end, rather than be seen as an inadequate mother.

My mother somehow outlived that crushingly hopeless part of her illness. After her death, a few years ago, I spent a year of purposeful reflection recalling her other side, the silent struggle she waged for normalizing her life and doing her best as wife and parent.

She went with me by streetcar after school, in the dark and cold winter hours, to years of piano lessons, and waited in stuffy corridors, over an hour each time. She carried me to the bathroom when I had a fever until I was an adolescent, because she believed she was protecting my heart. She worried about me, and tried to impart the values that would shape my inner character – stressing honesty, compassion and responsibility.

I like to think that in the end, she felt she’d had success in raising us.

Suzanne Killinger-Johnson, 50 years later, chose the wrong solution to deal with her demons. But she was not so off base about her fears. Stigma still surrounds mental illness.

As many of you know, one in three people believe society would think less of them, if it were known they suffered from depression and anxiety.

I’m reminded of the writing of my Toronto Star colleague, Scott Simmie, known to many of you for his courageous outreach and research in the mental health field. This quote is taken from The Last Taboo: A Survival Guide to Mental Health Care in Canada, which Scott co-authored with Julia Nunes, published just three years ago. “Stigma was…the most agonizing aspect of my disorder. It cost friendships, career opportunities and – most importantly – my self esteem. It wasn’t long before I began internalizing the attitudes of others, viewing myself as a lesser person.”

He goes on to write, “It was a godawful feeling that contributed to the suicidal yearnings that invaded my thoughts.” He describes going back to work, seeing colleagues and suffering the pain of their silence, stares and awkwardness, bringing back all the fears he’d thought he’d overcome.

I’m frequently invited to speak on this and other health care issues because of my former columns on social justice issues and because of my current work as an advice columnist dealing with people’s relationships. I assure you this latest connection is very valid.

No one can stress enough the important role that close relationships play in early detection of mental disorders, and support for treatment. They’re also key to helping consumer/survivors return to jobs and maintain productivity….so relationships are not only personal stuff but matters of social and economic importance.

I’m not trying to preach to the converted here. Saying that relationships matter is a motherhood statement. But I do get stacks of emails, faxes and letters seeking advice, in which people describe how their lives are clouded, compromised or deeply disturbed because of things that went wrong between children and parents, between partners, colleagues, friends, and even neighbours. It’s certainly clear to me that relationships are central to wellbeing.

Strangers write to me, knowing I’m not an expert in any one field, but that I’ll help find a path through their confusion, and refer them to appropriate community resources and experts, along with giving them my own take on their situation.

Their questions reflect every concern which many of you address as mental health advocates – such as people dealing with oppressive bosses, addictions, sexual problems, depression ( that’s such a big one, of course), or struggling with conflicts with teenagers, or low self-esteem (which is huge among younger people), or anxiety about their partner’s behaviour, balancing work and family, or difficulties caring for aging parents.

And their relationships are even more significant where mental illness is a factor.

Some of you will know the name of a man I’ve talked to in this field, Phil Upshall. His is a story he’s thankfully willing to tell, and has done so. Phil, who now lives in Guelph, is chair of the Canadian Alliance on Mental Illness and Mental Health, which is an 11-member association group. He’s also president of the Mood Disorder Society of Canada.

What got Phil to this activist phase of his life eleven years ago isn’t a pretty tale. He’s a former lawyer, diagnosed bipolar, who used up his clients’ trust accounts, spent three months in a psychiatric ward, was disbarred, and sent to jail. He lost everything including his marriage and former friends; even his children stopped speaking to him. He says it took four years before he could walk out his front door without turning back and hiding within its walls from the outside world.

He told me he returned to a new life in which he only surrounds himself with caring people. And he says it took a relationship with a woman who truly loved him and supported him despite his past.

Phil Upshall also speaks of individuals who reached out to him on his difficult journey, some of them unknown to him to this day. A man who sat by his side and held his hand as he awoke in

hospital after he attempted suicide; a court clerk who cried when he was taken away to prison, telling him there’d be better days ahead; a psychiatric nurse who showed she cared about the person he was, and didn’t shun him because he had a mental illness.

What will it take to get past a stigma that’s endured for centuries? It will take a strong voice…..made up of mine, yours, and all the others we help make aware of mental health issues.

A voice of advocacy that will persuade governments to pay attention to the needs and keep after them to ensure they follow through on commitments such as the recent Ontario Liberal budget.

The World Health Organization says depression is the single highest workplace illness, and the highest for loss of productivity.

You’ve heard it before but it bears repeating: that in Canada, the cost of mental illness is estimated at $16 billion a year, and the economy loses $11 billion a year because of it. Yet there are few accommodations in anybody’s workplace to make it easier to return to work after a bout with depression. Few welcoming environments with arrangements for reduced stress, or flexible hours, or better education for co-workers so that people won’t be shunned and made to feel not normal.

Stigma persists because too little is being done about it.

In this province, for example, we’ve seen twelve years of stagnant funding, which meant cuts to vital programs, right up until last month’s budget committed to investment in community-based mental health and addiction services. These funds can reduce hospitalizations, emergency room visits, and most important, they can save lives.

We need a strong voice, and to be unafraid of any stigma on our family member if it’s personal events which have motivated us. We need that voice to keep the Provincial Government accountable.

Along with efforts at increased awareness, it’s crucial that the message is carried to our local MPP’s, and to the press, that this is a health issue that can’t ever be isolated, ignored, or pushed aside. It’s as urgent as cancer, more widespread in human terms and more costly.

Along with better treatment plans, we need broad education toward public acceptance, workplace accommodation, and family supports. And we need to assure that families have access to the promised supports, such as the excellent programs offered here at the George Hull Centre – so there is no fear of shame for themselves or their children, only the determination to help them.

Stigma MUST be overcome, so that the crucial human need for survival with self-esteem, can carry on.