My son suffers from a mental illness. There – I’ve said it, and publicly, too. For the longest time I couldn’t do that, and even now, I sometimes hesitate, wondering what kind of reaction I will get.
If I told you my son has cancer, or has been diagnosed with diabetes or heart disease, I know I would receive sympathy, offers of help and support, as would he, along with the cards, flowers, and fruit baskets that usually accompany a hospital stay. But not for him, and for the many others who struggle with this cruel disease, made even harder to bear because of the social stigma, prejudice, isolation and poverty that go along with it.
I now have the courage to say he has a mental illness, but it is still very difficult for me to name what he has – schizoaffective disorder, which combines symptoms of both schizophrenia and manic depression. I remember 15 years ago when I learned that my handsome, bright, funny, loving son had been diagnosed with schizophrenia. I cried for days.
It was the beginning of a long and tumultuous journey for both of us and my family, one that sometimes filled me with terrible despair, and at other times, immense gratitude. The despair came from trying to deal with the complexities of the mental health care system, which just about everyone with any experience of it will tell you is broken almost beyond repair. It also came from watching him suffer, and being unable to help him when his illness took him to a dark place where those who loved and cared for him could not reach him.
The gratitude came from meeting those unsung heroes in the system who, despite lack of resources, heavy case-loads and difficult clients, were unfailingly patient and kind.
I was also grateful for the steadfast support of my ex-husband, who never turned his back on his son, no matter how abusive or negative his behaviour, and was always there for him.
To have a loved one with a mental illness, as one friend of mine says who also has a mentally ill relative, is like living in another world, where you are often alone and afraid. You begin to question everything: the pharmaceutical industry, the health care system, psychiatrists, the nature of good and evil, what constitutes “normal” behaviour. You remain silent when others talk about what’s happening with their children: graduations, new jobs, marriages, children, homes, holidays and trips spent together. You worry when someone with an untreated mental illness commits some terrible act of violence that your relative will encounter the inevitable backlash of fear and anger. You feel guilty because you think that maybe there was something you could have done or something you didn’t do that caused your child to develop this terrible illness.
Fortunately for me, I got involved with the Canadian Mental Health Association in Nanaimo, and that has made all the difference. I decided to join the board because I felt this would be one way I could deal with my grief and frustration. The people at the CMHA would understand. They were also working on solutions, which I needed.
I was a bit concerned that this might prove to be a gloomy experience, but it has turned out to be just the opposite. As the sign over the desk of Christina Martens, our executive director, says, “Irrational optimism practiced here.”
And slowly, that’s what I have been learning to do myself. Hope is hard to come by when someone you love has schizophrenia, but it is possible.
Kathryn is a board member of the Canadian Mental Health Association, Mid-Island Branch, Nanaimo, www.mid-island.cmha.