By Liz Belfield, Program Manager, Parent/Professional Advocacy League
Children’s Mental Health Week (CMHW) was started in 1991 by a group of families in Missouri, now called Missouri Families 4 Families, who wanted to fight discrimination and stigma in their community. The Parent/Professional Advocacy League (PPAL) supported these families and this idea, bringing CMHW to Massachusetts in 1996 to do the same –fight stigma and promote family wellness in communities.
We use this metaphor of ‘fighting’ stigma because for a lot of our families, it is a fight. When parents come to us for help, we tell them we will train them to be advocates, but what is an advocate but a fancy word for fighter? Advocates push issues forward, advocates support policies that help them, advocates fight for their causes. The parents who come to us for support already know how to fight. They’ve been fighting for their children since day one. What we teach them is how to channel their parental instincts, their internal protective mamma and papa bear- ness, into meaningful action that causes positive change for their children.
And a lot of what these parents are fighting is stigma. Stigma is so harmful in so many different ways. It has been shown to have a profound effect on a person’s sense of self and can diminish their self-esteem and confidence. Children and young people have been shown to experience higher levels of stigma than adults. Stigma is so pervasive. It doesn’t just affect the individual, but their family and friends, their school teachers and peers, their community leaders and health care professionals. Stigma can restrict access to services and the services themselves. In fact, the former US Surgeon General, Vivek Murthy, stated that stigma is one of the most important problems facing the entire mental health field.
On average, individuals wait 8-10 years from when mental health symptoms emerge to when they seek help. Can you imagine someone waiting 10 years for cancer treatment or 10 years for a heart transplant? This lag in help isn’t due to not needing help, but not knowing how to get help or being afraid to get help. When those struggling with mental health challenges are portrayed as violent, unpredictable, or ‘crazy,’ it’s not hard to imagine why they wait so long to get help. Unfortunately, those individuals are more likely to be the victims of violence, rather than the perpetrators. Stigma is preventing individuals from getting help, which could cost them their life.
Mental health stigma is literally killing people. Not through the tragedies broadcast on the news, but through suicide. Suicide is the 10th leading cause of death in the US, the 3rd leading cause of death in children aged 10-14, and the 2nd leading cause of death for youth aged 15-24. In fact, more young adults die from suicide than from cancer, heart disease, AIDS, birth defects, stroke, pneumonia, influenza, and chronic lung disease COMBINED. And rates in minority and LGBTQ communities are worse. Native American teens have a suicide death rate that’s twice the rate of Caucasian teens and for LGBTQ aged 10-24, suicide is one of the leading causes of death.
This is happening all over the country, all over the world, and our little Commonwealth is not immune. Massachusetts is higher than the national average at 11% of youth reporting experiencing at least one major depressive episode in the past year, and suicides in Massachusetts increased 40% from 2004 to 2014. In 2014, there were 608 recorded suicides, more than homicides and motor vehicle deaths combined. And that number is only rising.
Another concerning statistic is that while 55% of people who died by suicide in 2015 were in the middle of a mental health problem, only 39% were receiving services or treatment for mental health or substance use. Why aren’t individuals getting treatment for their mental health? Why is there a 10 year lag between symptoms and treatment? Why are we letting this issue hurt our families, friends, and neighbors?
We need to change the way we think about mental health and talk about mental health. Books and articles don’t have as much impact on the way we think as the people around us do. When you stand up and say something, you give permission to others to say something too. We need to create a culture where mental health can be talked about productively and openly. We need to create places that people can go to receive help without judgement or shame. We need to talk about how mental illness is not a sign of weakness but how seeking and accepting help is a sign of strength.
Families fight stigma because they are fighting against institutions and red tape that prevent their children from getting the care they need. They are fighting against negative connotations that cause their children actual harm. They are fighting against whispered words and dirty looks that make their children feel like mental illness is shameful. They are fighting against fear, against prejudice, against discrimination, against hate. But mostly important, they are fighting for something – for access to care, for a safe place in their communities, and for their children to have a chance to change their futures for the better.
This blog is part of HCFA’s Children’s Mental Health Week series.