Sunday, April 15, 2012

Stop Blaming Me for my Daughter's Mental Illness

An article posted on April 12th by The Huffington Post - Canada:
By Susan Inman (pictured)

As the parent of someone with a severe schizoaffective disorder, I'm used to being viewed with suspicion. Sometimes the pathologizing gaze occurs in unexpected places. Following the publication of an article I wrote for B.C. Teacher about the importance of educating staff in schools about mental disorders, a fellow teacher asked me if I knew what we'd done to cause my daughter's illness.

The unjustified suspicion of mental health professionals can be even more damaging. When we took our floundering teenage daughter to a credentialed counseling psychologist, we knew nothing about severe mental illnesses. As it turned out, neither did she. Her training included no material on psychotic disorders. Instead, it focused on psychodynamic theories, which look for the causes of current problems in people's early childhood experiences. Her misguided assumptions, fed by her training, led to chaos in the early years of our daughter's illness and to an unnecessarily long and dangerous psychotic episode.

Even with recent decades of robust research in neuroscience, parental caregivers of people with psychotic disorders soon learn that their interactions with the mental health system will be filled with blame. Many mental health clinicians in Canada, like our daughter's counselor, have had no science-based training on schizophrenia or bipolar disorder. Too often their interactions with families weaken the bonds that the illnesses have already frayed.

Psychiatry, for most of the 20th century, used the theories of Freud, which were never based on evidence-based research, to develop elaborate ways of blaming parents for schizophrenia. The Canadian Psychiatric Association now explicitly describes schizophrenia as a treatable brain disorder that is not caused by poor parenting.

Our relationship with our daughter's psychiatrist has been extraordinary. I believe it is responsible for her unexpected recovery. When the psychiatric team at Vancouver's St. Paul's Hospital first met her, she was one of the most severely psychotic teenagers they had ever seen. From the time that one member of this team, our daughter's current psychiatrist, began to work with her, he listened carefully to our input as we navigated the arduous path to her stability.

Even with this history of mutual respect, my husband and I were stunned recently when we were discussing strategies for managing any difficulties that might emerge during an upcoming trip. He stopped the discussion, looked at us, and said, "You guys are such great parents!"

I'm immersed in a community of parental caregivers in Vancouver and have been asking if anyone has ever been told anything like this. The answer is, "Never." These friends, who constantly inspire me with their energy, dedication and resourcefulness in advocating for their struggling children, find it hard to imagine hearing this kind of supportive response. Instead, my question is usually greeted with yet another account of the wounding of families by the mental health system.

Some parents do receive much-needed support from their own family physicians, who also provide primary healthcare to their often unstable sons and daughters. For many years, both my husband and I have freely vented, grieved, and tried to problem solve with the informed and compassionate help of our family doctor.

In recent years, the Canadian Psychiatric Association and the College of Family Physicians of Canada have begun an active collaboration including an annual Shared-Care conference. Much of the focus has been on helping family physicians become more knowledgeable in responding to the serious mental illnesses they are increasingly being asked to manage.

The upcoming Shared-Care conference in Vancouver offers richly informative sessions for family physicians. However, I don't see any sessions that provide family physicians opportunities to share their often considerable expertise in helping parents survive their daunting tasks. Fortunately, this kind of conference does invite informal communication on just these kinds of overlooked topics. Since family caregivers for people with severe mental illnesses save the healthcare system money, new ways of supporting them are well worth considering.
Photo credit

1 comment:

Laura B said...

Good points about the need for involving and supporting parents as part of the care team. It is unfortunate that this woman at first felt "blamed" for her daughter's illness. However, I fear we have swung too far the other way with the bio-medical explanation. Environmental stressors are also risk factors, and after one is ill, the level of expressed emotion in the home makes a big difference in the course of someone's illness. All the more reason to support parents who are caring for their children with psychosis, and to help to teach them coping strategies to deal with the stress associated with doing so. We can do so without blame, with compassion and consideration for the difficulty of their situations. Education is shown to be helpful for some, but for those who need extra support, mindfulness techniques could help parents to enter into their roles with some helpful tools for coping with the challenges that inevitably emerge. David Whitehorn and Patricia Cosgrove are conducting a small study on mindfulness for parents at the NSEPP at present. Although we definitely need to avoid blaming anyone for mental illness, we must go further than that. We need to help provide tools which will support everyone involved and allow for the best outcomes. Focusing on what works, which is as psychosocial as it is pharmacological, is paramount.

There was a prominent psychiatrist speaking at the Douglas Hospital in Montreal yesterday who said that although medications can put a damper on certain systems in the brain, the only way to change the brain is through interaction with one's environment, and by ultimately changing behaviour. Medications allow the brain space to heal. They do not do the healing. We need to go further with creating programs where persons with psychosis can find meaningful ways toward wellness. Understanding the complexities that we do know about the process of mental illness, and avoiding biological reductionism, can lead us in the direction of validating and supporting the recovery journeys of our loved ones more holistically, and more effectively.