When her five-year-old daughter was diagnosed with bipolar disorder in 2002, Sarah Cannon was appalled at the lack of services available. So she spoke out – and paid a price.
The evening she was featured in her local newspaper, a parent called to “disinvite” Emily from a birthday party. Before long, she was being ostracized at her St. Catharines, Ont., school and labelled a problem child. At home, things were even more difficult as her father also was struggling with mental illness. (He died by suicide the following year.)
Then, “the whispers began,” Ms. Cannon says, “about how we were bad parents ... the ‘crazy family,’ that kind of stuff.”
The collateral damage included her younger daughter, Amy, who was subjected to taunting and teasing, just like her sister. “This isn't how I envisioned family life,” Ms. Cannon recalls.
She is not alone. One in every five Canadians will suffer from a mental illness at some point in their lives. Most will recover fully, but a minority will, like Emily, suffer severe, lifelong psychiatric illness. In her case, it can include depression, mania, wild mood swings and difficulty in carrying out the basic tasks of daily living.
Few families are even remotely prepared for the physical and psychological demands they face, whether it’s an autistic toddler, schizophrenic teen or a grandparent lost to dementia. The ties that bind can undergo severe stress, with routines disrupted, career paths altered, finances decimated and relationships taken to the breaking point.
Many families don't emerge intact. As Ms. Cannon puts it: “Mental health has left us dealing with things we couldn't have possibly imagined. ... It has touched every aspect of our lives.”
When illness strikes at a young age, parents shoulder the biggest burden. Stigma is a major problem, but far from the only one.
Ottawa resident Vera Klein, whose son, David, was diagnosed at 10 with depression and severe anxiety disorder, says that having a child with a mental illness is very different from having one with a physical illness. “The supports are there for physical illnesses. They’re not there for mental illness.”
Ms. Klein was lucky to have friends and family who remained loyal and supportive even after David's illness became public knowledge, as well as an employer who allowed her flexible hours, and to work from home if necessary.
Still, she says, the demands of caring for a child with a severe illness can be overwhelming, isolating and expensive.
David, for example, dropped out of school because of his severe anxiety and panic attacks, and lay around the house all day in a foul mood, while his parents desperately tried to find treatment that would work – counselling, special education, medication, electroconvulsive therapy and admission to hospital. Finally, an intensive wilderness course run by psychologists provided a breakthrough.
Ms. Klein says she knows people who delayed seeking help for children because they feel ashamed and fearful of how they may be perceived and treated – evidence, she feels, of the need to band together, to share information and to offer mutual support.
“As a parent, you get blamed for the child's challenging behaviours,” she says. “It can take a long time to get a diagnosis. So, when you realize there are other families going through the same thing, that you're not alone, it's incredible and empowering.”
In professional terms, Ms. Cannon was less fortunate. She worked at a hospital, but daycares refused to accept her daughter, saying her needs were too great, so she often had to call in sick and care for Emily herself.
Eventually, she took “a job where I could work at home. The pay was a lot less, but it did allow me to take care of her as well as get the education I needed to manage her at home” – in the hope Emily won't require institutional care later in life.
The constant demands take a toll, Ms. Cannon says. “It gets to you. You start to doubt yourself, to think maybe it is your fault.”