Now that Mental Illness Awareness Week (MIAW) is over for another year, how many of you learned about the early warning signs of schizophrenia and bipolar disorder?
Or the Early Psychosis Intervention programs that offer the best help? Since over 3 per cent of the population will develop these disorders, usually in adolescence or young adulthood, it's useful information.
It's not an oversight that you probably didn't receive this basic education about psychotic illnesses. The Canadian Alliance on Mental Illness and Mental Health (CAMIMH), the sponsor of MIAW, has clearly been guided by social scientists interested in de-medicalizing mental illness in its public education campaign.
Their 2008 National Integrated Framework for Enhancing Mental Health Literacy in Canada (p.7) reveals the dubious notions that are now influencing how we are supposed to think about mental illness literacy:
There is a tendency among professionals to assume the mental health literacy of the public will increase as it aligns with professional thinking, but there are many reasons for caution about adopting this approach...
The Framework then warns about this approach, because "its emphasis on medical perspectives...can be associated with disempowerment, pessimism, and increased stigma."
Since these particular illnesses are now considered to be medical disorders by the medical community, it would make sense for a public education campaign to let us know what "professional thinking" is about these brain disorders. Limiting the dissemination of medical information on psychotic disorders actually leads to the "disempowerment, pessimism, and increased stigma" from which we're presumably being protected.
Parents who don't understand the strange behaviours that accompany psychosis are completely disempowered. Delays in getting treatment do lead to poorer outcomes, so there's reason to be pessimistic when trends in social science dominate the distribution of knowledge about medical illnesses. And the more the public witnesses the disturbing behaviours of people with untreated psychosis, the more stigma they will have about all people suffering from mental illnesses.
Currently, the strongest component of Mental Illness Awareness Week is its Faces of Mental Illness program, which profiles five Canadians who have battled a variety of mental illnesses and gone on to build very productive lives.
One of those people profiled this year is Vancouver author and artist, Sandra Yuen MacKay. Sandra has worked for years with the B.C. Schizophrenia Society to educate people about psychotic disorders. Her memoir, My Schizophrenic Life, The Road to Recovery from Mental Illness, provides an informative account of the frightening intrusion of this illness into her teenage years. Fortunately, Sandra's parents eventually were able to get her into a local hospital where her illness was diagnosed.
In a recent conversation, Sandra mentioned that if education about psychosis and if Early Psychosis Intervention programs had existed when she became ill, she might have received appropriate treatment much sooner.
Last year Sandra participated in a workshop I gave for the B.C. School Counsellors Association on how to better support students who develop psychotic illnesses. In discussions with these counsellors, it was clear that they really wanted to understand these disorders, which they hadn't learned about in their previous training. Although many were working in schools in and around Vancouver, where good Early Psychosis Intervention programs have existed for over 10 years, few knew about them.
It's not surprising that many school counsellors haven't heard about these programs. Even though in B.C., we have an excellent plan describing how EPI programs should operate, appropriate funding hasn't been allocated. At the same time that this plan was being unveiled, for instance, Vancouver's Early Psychosis Intervention program lost funding for its EPI Educator position.
This outreach worker went into the community including secondary schools where she taught counsellors how to recognize the early signs of psychosis. Counsellors also learned how to easily connect students to EPI for psychiatric assessments that are otherwise very difficult to obtain.
One of the many beneficiaries of Vancouver's EPI program is Tracy Windsor, a very articulate young woman. As Tracy says, "EPI has been the backbone of my recovery from bipolar disorder. Without the staff at EPI, I believe I would have fallen years behind in my recovery."
Tracy now shares her story through the Mood Disorders Association of B.C.'s Lowdown program. As well, she supports students with mental illnesses by coordinating the Kaleidoscope program at the University of British Columbia.
Students struggling with psychotic illnesses they don't yet understand are fortunate if they connect with a group like Tracy's. They might instead wander into a workshop like the ones offered recently by the Mad Student Society at the University of Toronto and at York University on Resisting Mentalism: Becoming an Ally to Mad People and the Consumer/Survivor Community.
Informed by contemporary social science theories, this group wants to help students who "have been labeled with 'mental illness' diagnoses," a process the Society refers to as mentalism or saneism, to challenge "the medical model understandings of madness."
I wish public education about the "medical model" perspective on psychotic disorders had been much better 14 years ago when our younger daughter began showing signs of what developed into a severe schizoaffective disorder. Our ignorance led us to choose a therapist who has a MA in Counselling Psychology. She trained in a program at a major Canadian university that neither offered nor required curriculum on psychotic disorders. This crucial mistake on our part led to circumstances that meant our daughter unnecessarily experienced a two-year psychotic episode.
One of the sad benefits of writing a memoir about these experiences has been to receive messages from other families who are continuing to make the same mistakes we made. The one national public education campaign that we have about mental illnesses isn't helping. Early Psychosis Intervention isn't even a topic listed on CAMIMH's website.
Linda Rosenberg: Rooting for Recovery
the word recovery. However, my impression is that no drug, no therapy, no community is going to fix her broken brain. I do believe it is heretitary. She had "issues" from the beginning and all along the way. I could write a book on each of the ages. I too wish I had had more information about schitzophrenia and where this path was leading. It was as if no one knew or wanted to share this with me. One of her 20 something counselors tried to give me a 'tip" when she was 17. She suggested we get her into the hospital right away, but did not inform me why. She was trying to lead Heather to a disability check before she was 18. What she went through in the following 9 years before she had that is shameful. She was homeless, she was missing for 3 months, etc.
etc. etc. Though the SS check is small, it does with the systems in place, pay for her basic needs.
Her delusions are constant. Nothing she thinks has anything to do with reality. She is now safe
and cared for and my tramua is all but over. I have accepted what is and can move on with my life.
I wish there were a way to know if people are discussing situations in the US or Canada, and, if in Canada, which province's mental health system is being described. I hope you each continue to speak out about what did and did not work in regaining mental stability.
I admire your stamina.
Susan
Of course, the best all around resource on truth about psychiatric drug treatment can be found at Robert Whitaker's Mad In America website.
She had a complete and total psychotic break just before she was 22. She broke into our house and threw paint around in an effort to see the invisible man who was stalking her. The police took her to the hospital and the hospital let her out that same night. She had lied to them about the situation and they "could not do anything".
She lived in her apartment, staying in one room. She refused to eat because she could see 'them' poisoning her food. She attempted suicide and was in a coma for a few days. When she revived, they sent her to the detox unit where she talked the doctor into letting her out days later.
I confronted the nurse and asked - what does it take? The bottom line is it is up to the patient who is a consenting adult. They kept her for an extra week, but that was all.
She has reached the age of 25 and stopped all non prescribed drug, and diagnosed with schizoid-affective disorder. She still hallucinates but has learned to differentiate them from reality.
Now she is a big part of her daughter's life with regular visitation and participation.
It is a very scary world for people who have psychotic breaks and it is very scary for those who love them. If you haven't seen mental illness at work, it is very hard to imagine.
In my opinion a big part of the problem is that many, many people have experienced various forms of mild mental illness (mild depression, mild anxiety, etc) and they often assume that what worked for them will work for everyone.
Most of those folks have never experienced severe mental illness and the devastating damage it does. My own daughter has schizophrenia and she literally lost everything before I went to a judge and he issued a court order to force the local hospital to give my daughter the proper medical treatment that I believe saved her life.
Thanks
People with mental disorders usually self medicate. The drugs prevent treatment because they confuse the issue. As well, the human brain doesn't actually stop changing until the age of 25, so that makes diagnosis hard too.
Then she had a baby when she was 20 years old. We tried as hard as we could to look after the baby while not assisting her bad behaviours. She finally confessed that she need to go to detox and we looked after the baby for her. She didn't finish the program but we had talked to children's services and followed their advice which included the process of applying for guardianship.
continued in comments.
It's not possible for a person with schizoid-affective disorder to separate reality from delusion, that is the basis of the diagnosis. Im not sure what your' deal is but, your' story is not adding up.
Having someone to talk to and get it out of my system, is usually great medicine and reduces my likely hood of going into relapse.
He has not been seen nor heard from for 10 days now. Is this the answer ? Isn't it better to treat before such disorders wring everything out of one's life ?
At that point I went to a judge and he issued a court order to force the hospital to provide proper medical treatment to my daughter. When she finally got the anti-psychotic medications that she so desperately needed she was able to start getting better. She is now in her own apartment and working on her recovery, and she takes anti-psychotic medications.
One helpful resource for family members is the family support group offered by the provincial chapters of the Schizophrenia Society of Canada. This amazing support groups/educational program provides support to family members of people who have schizophrenia, bipolar and schizoaffective disorder. You can find further information by going to the website of the Schizophrenia Society of Canada.