Silenced by stigma: Caregiving for those with mental health conditions

Did you know that one out of every five Canadians experiences challenges at least once in their life time?  Despite the ongoing efforts of excellent campaigns such as Bell’s Let’s Talk, and brave celebrity mental health spokespeople such as Clara Hughes, Howie Mandel and Serena Ryder, the stigma remains. People are afraid to say they suffer from illnesses such as depression, schizophrenia, obsessive compulsive disorder and bipolar disorder for fear of being judged , losing their jobs and/or  being labelled “crazy”.  It is no surprise that many individuals with mental health challenges often have addiction issues as they turn to drugs and alcohol to ease their symptoms.

While increasing attention has slowly been drawn to mental health issues, rarely do we hear about the family members who support those facing these challenges. Many caregivers feel they cannot speak out for fear of bringing shame to their loved ones.  As a result, family caregivers of individuals with mental health issues often cope in silence.  In fact, when preparing for this article I asked a number of professional contacts for a story of a caregiver who supports someone with mental illness – I did not receive one story.  No emails. No calls. No response. Clearly we have a long way to go to reduce the stigma and shame that continues to be associated with mental illness.

Caring for someone with serious mental health issues is a tough act to follow, particularly when it is done under the radar, with little or no support or training. Family members caring for those with serious and persistent mental illness often find themselves becoming a nurse/counselor/advocate/crisis worker/home-care and income provider all rolled into one.   Some of the roles they may play include:

  • dealing with crises
  • assisting with navigating Ontario’s complex health and social service system
  • finding housing
  • providing financial support
  • advocating on behalf of their ill relative
  • monitoring symptoms and supporting adherence to treatment plans to lessen risk of relapse
  • providing information on the context of a loved one’s life, to assist professionals in understanding them as a whole person

When reviewing that list it sounds as if a social work or psychology degree should be a prerequisite. However, in most situations the only requirement is that you have a family member or friend who needs this help and would fall through the cracks without your assistance.

Caring for someone with a serious mental health or addiction problem can have significant consequences for all family members. The chronic stress that family members’ experience, along with the practical demands of caring for their relative, can have an impact on their day-to-day living, health, social and family relations, careers and financial situation.

In addition, for someone with mental health challenges can be very isolating and lonely.  In one study, 45 per cent of caregivers of people with schizophrenia indicated they rarely or never get social support from family and friends. Without sufficient supports themselves, family members are at-risk of poor health and often experience anxiety, stress, shame, self-blame, depression, fear and anger. Of the one million working Canadians who care for a person diagnosed with a mental illness, one-third report that it interferes with their paid job due to chronic health problems, depression and excess stress when the burden of work or caregiving increases.

If you are a family member caring for someone with mental health challenges in Ontario, don’t feel you have to handle things alone.  Here are some places you can go for support:

The Family Outreach and Response organization offers recovery-oriented mental health support services to families.

The Family Association for Mental Health Everywhere (FAME) offers support to families where any mental illness is an issue by providing education, resources and coping strategies.

The Mood Disorders Association of Ontario provides a range of peer-based, self-help support groups. Some groups are for the person with the mental illness alone, others include the person with the mental illness and his or her family members.

Parents for Children’s Mental Health (PCMH) is dedicated to improving the lives of families and the services for child and youth mental health.  PCMH links families to important networks within their communities to ensure they get the care they need and the support of families who can relate and support them.

The Schizophrenia Society and its many local chapters offer self-help support groups for family members of individuals with schizophrenia.