This blog is still in its infancy, but people are asking me why I’m doing this. Why am I putting my family out on public display, even with thinly-veiled identities? Am I brave, or irresponsible, or in need of therapy?
(Well, ‘yes’ to all of those.)
But really. I can tell you why I’m doing this: stigma. I have spent decades of my life pinned down by the stigma of living with anxiety and of having recovered from an eating disorder. I have felt invisible and fake, and convinced that people wouldn’t like me if they knew who I really was.
Enough of that bullshit. This is who I am. I am not perfect. I am not particularly strong, or brave, or smart. I am flawed but surviving, and I can do that better if I tell the truth about my life. Our society, in general, will do better if we all tell the truth, and smash through the stigma that comes from living with mental illness. Mental illness is isolating enough without having more isolation imposed on you by society’s stigma. I don’t want Puck to feel the isolation I’ve felt. I am committed to working for change.
Things are better than when I was Puck’s age, for sure. Somedays, though, the stigma shows up where it’s least expected.I am a social worker by training, and currently head a small organization working on behalf of people affected by eating disorders. On Monday — the first day of Mental Health Week in Canada — I took part in a mental health fair at the local children’s hospital.
I almost didn’t go. Puck was having a rough morning. His return to school wasn’t going smoothly, and his anxiety had kept him up most of Sunday night. He was wishing he wasn’t him, in this life.
You don’t send your kid to school when they’re feeling like that.
So I asked him to come with me and help to set up the display, and hand out information to people. In my experience, when I give him a chance to help me with something at which he can be successful, it can improve his mood (I also promised him Timbits. I am not above sugar-bribery.)
The fair was bustling with health professionals and workers from other non-profits, and many visitors and staff from the children’s hospital stopped by to talk to Puck and I. No one seemed to think twice about why my school-aged boy was there with me. No one, except for one health professional who worked at the hospital.
She came by to chat about what our organization offers, and we had a great conversation about how we could work together. She told me many of her patients were people with mental health issues, including eating disorders.
Puck was getting restless, and went off in search of a drink. When he was out of earshot, the woman asked me why he wasn’t in school. Because we were at a mental health fair in a children’s hospital, and she had told me she works with people with mental illness, I felt comfortable telling her that Puck has been out of school while we try to get his anxiety and depression under control.
“Ooh,” she clucked. “That’s too bad. At least he’s not really sick, though.”
I raised a quizzical eyebrow.
“You know,” she continued. “At least it’s not something serious, like cancer.”
Nothing serious. Not really sick.
This, from a health professional who works with people with mental illness.
First of all, why must we compare all illnesses, physical or mental, to cancer? I have experience with cancer. It’s shitty. But there is no hierarchy of illness. Others do not get to tell you that your diabetes, or chronic fatigue syndrome, or rheumatoid arthritis, or eating disorder, is not that serious. They aren’t living with it. They don’t know how it consumes and controls your life. They don’t understand that the pain you feel is real. They don’t understand that while the illness itself might not be lethal, the pain you feel might make you wish you could find a way to end it.
Yes, some cancers can be a death sentence, but so can mental illness. Eating disorders are the more lethal of mental illnesses. 10% of people diagnosed with anorexia will be dead within ten years.
Then, there is the myth of whether someone ‘looks’ sick. This woman stated that Puck didn’t look sick, so therefore (she reasoned) he wasn’t ‘really’ sick. Maybe there are no obvious signs of sickness about him — no hair loss, no broken limbs. But I can tell he’s sick when I look at him. The light has gone out in his eyes. He’s pale. He’s so unhappy, he’s folding in on himself.
Puck may not be sick enough to hospitalize. Or maybe he is — and I sometimes fear he is, when he’s at his lowest. Does he need to be in a hospital bed, though, in order for his illness to be validated? (Don’t get me started on whether we’d even be able to get him in a hospital bed if one was needed. Mental health services for children in this province have dangerously long wait lists, many hoops to jump through, and little access to other resources while desperate families wait for help).
If Puck did have cancer, I’d feel relatively sure that he’d receive chemotherapy or other treatment in short order. There would be cancer care navigators, social work support, and fast-tracked appointments. The publicly-funded system would guide us to what we needed.
For mental illness, though, I’m stumbling around on my own, trying to navigate a broken system that is created by people who feel mental health is less important than physical health. I’m told to wait for months to see someone — even when he is in crisis. We pay out of pocket for his mental health treatment, because I fear how long we’d have to wait in the public system.
(Full disclosure here: I was once the senior policy advisor to the Minister of Health & Wellness in Nova Scotia. I helped to usher in the province’s first mental health and addictions strategy. I know where there have been opportunities to make things better, and how desperately this province continues to fall behind).
If Puck did have cancer, I wouldn’t be questioning whether it was a flaw in my own parenting that had caused it. Researchers and specialists would point me to possible causes. As a parent of a child with mental illness, though, I am given questionnaires and interviews about our family life, my parenting style, our family dynamic. Even under the guise of support, there is judgment.
Suggesting that a parent of a child with mental illness should be grateful they don’t have cancer undermines the seriousness of mental illness. Puck is experiencing excruciating pain, and it’s not one that can be easily fixed. So don’t tell me, or anyone experiencing mental illness, that it’s not real, or that they should be grateful its not something more serious. Mental illnesses kill. Mental illnesses destroy lives. Mental illnesses need to be taken seriously — by health care providers, citizens, and by the politicians who make health care funding decisions.
That’s why I started this blog. That’s why I’m telling our stories so publicly. People do die from stigma, just as they die from cancer. We need to support one another better. We need to educate, and understand. We need to stop the fear and the hurt. We need real investment in FULL health – mental and physical.
Happy Mental Health Week.