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.
In our experience, having a brain disorder does not exclude having a fulfilling and meaningful life any more than having diabetes or a thyroid disorder excludes having a fulfilling and meaningful life.
In fact, most have us have experienced the opposite. My son's recovery is possible precisely because of the anti-psychotic medications that reduce the horrible and terrifying symptoms of psychosis to the point where he can function in daily life, return to school and work, and enjoy fulfilling relationships.
By contrast, whenever he has gone off the medications, he has relapsed and had to quit work and school.
Go figure.
I come from Toronto and when my son was in a psychotic state and terrified, I searched desperately for help from the many mental health organizaitons in that city. I have to say that I did not find the FOR anti-medication philosophy at all helpful.
As I said, the anti-psychotic medications have reduced these symptoms to the point where he can function on a daily basis. They have enabled him to enjoy relationships, return to university, graduate with honours and find employment in a field of work he loves.
I also do not understand your condescending tone....I prefer to discuss differences of opinion with polite respect. You must realize that your point of view is not the only valid one.
In Canada one such group is Family Outreach and Response. Here is a link:
http://familymentalhealthrecovery.org/about-2/background
In the U.S. the brand new Mother Bear Community Action Network is sponsored by the Foundation for Excellence in Mental Health Care.
http://www.motherbearcan.org/
FEMHC motto: Expect recovery. The new mainstream.
Thank you for your comments.
I wish I could have your confidence in the “great initiatives going on right now trying to raise awareness that will hopefully put an end to these kinds of situations.” I can only hope that the organization sponsoring “Not Myself Today” decides to advocate for mandatory science based education on psychotic disorders in all programs training credentialed mental health professionals. Without this training, the kinds of mistakes discussed in my article will most certainly not end.
I also hope that this organization considers promoting a nationwide public education campaign on psychotic disorders which afflict 3% of the population. Without this education, care for people with psychotic illnesses will continue to be inadequate. I just attended a UBC sponsored conference on schizophrenia which included a presentation by Dr. Eric Chen, an advocate in Hong Kong for Early Psychosis Intervention. His team realized that the general population lacked basic knowledge about psychosis so they organized just this kind of nationwide public education program.
I’m glad you found the assistance you needed. It sounds as if your mental health issue didn't need medical assistance. Most psychotic illnesses do require medical (psychiatric) interventions as an essential part of the recovery process. Unfortunately, many people lack access to this care. I hope you will support people with the most severe mental illnesses; it’s hard for the public to provide the most useful support when they don’t understand these disorders.
Susan Inman
There are great initiatives going on right now trying to raise awareness that will hopefully put an end to these kinds of situations. Getting everyone involved and comfortable speaking about mental health is the first step. I am pledging my support to improve mental health in Canada.
Pay more attention to your mental health and well-being. Do your best to support a loved one/friend/co-worker who is living with a mental health issue or illness. We need to challenge the negative stereotypes and attitudes that exist around mental illness. Volunteer your time to support the mental health cause and contact your elected officials to help influence policy that will improve the mental health system.
YOU can make a difference. Share your story and take the pledge!
www.notmyselftoday.ca
@NMTCanada
Great article! I know a lot of parents feel that they've done something wrong any time their child is suffering. Some things are out of a parents control, if not most things, and parents need to be supported so they can help support their child.
There are a variety of theories about the deveopment of mental illness and these have included family environment, viral theories, genetics and if there were issues in pregnancy. Sometimes it can be uncomfortable to be a part of family assessment because people believed they are being judged.
The most important part of recovery is the relationship between therapist, clinicians etc and the client. It is based upon compassion, understanding, guidance and empowerment. I suggest to work with those that you trust, feel comfortable with and who you are able to be vulnerable with.
Recovery means something different to everyone. Ultimately, it is about taking personal responsibilty for oneself. No one wants to have a mental illness. It is important to understand ones relationship with the illness and the meaning the illness has to them. And I dont like the term illness. It sounds llike something is wrong with a person which is untrue.
Someones experiences are what they are. Diagnosis change from one psychiatrist to the next. The diagnosis really don t matter. ITs focusing on the experiences without judgment.
Accepting oneself is the beginning of letting go of the possibilites of who one should be but focusing on the who I really am. And you are awesome just by being you!
Three years after finally finding an informed and understanding psychiatrist, I'm graduating from a major Canadian university, and considering grad school. Had I not believed enough in myself to continue to seek treatment, I could be popping anti-depressants and making minimum wage.
The damage that can be caused by careless, incompetent or non-empathetic mental health workers is immense. That fact should be not only acknowledged, but heavily stressed in any training future health workers receive.
When further frightening behavioural events led to my having to call the police; I was told to just go home and wait for things to calm down.
Until a panel at a major hospital finally offered a diagnosis of schizophrenia, I felt like nobody was listening when I tried to point out that my wife needed help.
After my wife was finally accepted into the system; she got regular help from a local mental health team.
Very few people along the journey were prepared to see her schizophrenia for what it was, even after diagnosis.
When will we finally require all programs training mental health clinicians to provide science based curriculum on psychotic illnesses?
Susan Inman
From wiki, here is an example that supports the symptom bearer theory:
"A child may be regarded as a bully and a troublemaker in school and labeled a "problem child," when he may in fact be expressing conflicts and problems, such as abuse from home, by acting out and being "bad.""
This makes sense, as the situation where an overly strict parent causes anxiety in their kids. However, schizophrenia seems a little extreme, and would really be assuming some deep abuse if it were constructed.
It apparently grew out of the 60s so I am not even sure how valid it is. From what I hear there is more focus on fixing the symptoms than identifying an underlying cause.
How does one check the backgroud of a psychologist or psychiatrist without first having an appointment?
It's not just parents who are blamed for "causing" schizophrenia. My ex-wife is living with this illness, and her sister (my now ex-sister in law) chose to blame me for it.
Having watched what happened to my wife and experiencing the painful turmoil it stirred in the family relationships; I understand that the anguished desire for answers can lead to false conclusions, especially in the case of an illness about which not enough is known.