Insights from a Mental Health Advocate
– Chris Summerville
When I was fifteen years old 53 years ago, we had no vocabulary for mental health issues and mental illness. The real problem was that stigma was very pervasive. There was no mental health education or mental health literacy. And having “mind problems” was very embarrassing. The most common description was that the person “had a nervous breakdown.” Actually there is no such thing. If a relative was “institutionalized” that was also definitely kept as a secret. Stigmatizing words were used as they are today: crazy, nuts, looney, wacko, schizo, insane, etc.
Today diagnostic labels are fairly common: anxiety, depression, post-partum depression, bipolar disorder, psychosis, schizophrenia, eating disorder, PTSD, etc. It is not unusual for people to have several diagnoses or to be re-diagnosed and relabeled. While stigma has been significantly reduced for many mental illnesses, it is still rather pervasive. And it is the leading cause why people do not get help. (People with a diagnosis of psychosis or schizophrenia are the most stigmatized.) No one wants to be viewed as “crazy.” How mental illness is reported by the media and portrayed in Hollywood movies, and T.V. shows contribute to stigma. One’s culture can also determine the level of societal stigma.
As to mental health and well-being 53 years ago, again not much was addressed except self-esteem, personality styles, and stress. It is much easier today to talk about mental health than mental illness. Today there are many mental health promotion programs and services. We are more knowledgeable about attachment issues, adverse childhood experiences, and trauma. It is easy to find material on resiliency, stress management, and well-being. But again talking about mental health is not as easy as talking about dental health! And accessing the various kinds of supports and services to address the above issues can be challenging due to lack of capacity and resources.
Another thing that certainly wasn’t recognized when I was struggling with depression as an adolescent and young adult was the possibility of recovery in/from mental illness. The “recovery philosophy” has made headway in the last 20 years in Canada. Psychiatry describes recovery as clinical remission and a “return to full functionality.” The “consumer movement,” that is people with living/lived experience like Pat Deegan and Elyn Saks, take issue with this limited view of recovery. People can experience recovery which means living beyond the limitations of a diagnostic label like schizophrenia with hope, meaning, purpose and social inclusion despite ongoing symptoms. That potential is possible for anyone. Recovery is about having a quality of life or enjoying life satisfaction. But it more than just taking medication. While medication is important for most people, illness management, stress management, positive mental health practices, family support, and addressing unresolved trauma issues or adverse childhood experiences, as well as a health spirituality contribute to the recovery process. Recovery is all about helping the person to reach their potential.
Unfortunately, psychiatry still operates more from a reductionistic biomedical model. Psychological support services are not covered by provincial and territorial health care plans. Our mental health system is more of a mental illness system because the goal is stabilization by symptom reduction. While that is certainly important, we have a long ways to go towards having a truly recovery-oriented mental health system as in such countries as Australia, New Zealand and Ireland. In Manitoba, formal, intentional peer support only began to be funded as a pilot program last year through Peer Connections Manitoba (formerly the Manitoba Schizophrenia Society). Peer support is the fastest growing profession in the mental health system in England. Embedding peer support within the mental health system is one of the key ways to creating a recovery culture.
It makes me sad that there are many people who refer to themselves by their diagnosis. “I am a schizophrenic.” With gentleness and softness, I always respond, “You are a person who lives with schizophrenia.” Sadly many people define themselves by their diagnosis. A diagnosis is merely a label, it is not one’s identity. People who internalize stigma, also called self-stigma, struggle with identity formation. That is why recovery is a journey of discovery: discovering your identity, strengths, hope, and dreams. Because a person with a mental illness CAN experience good mental health!
Family involvement is very important because no one recovers in isolation. It takes the informed and caring support of family, as well as one’s community of friends. Parents struggle with guilt, shame, isolation, and ambivalence. That is why it is so important that families understand not only illness management, but how to foster the recovery process, dealing with their own stigma, uncomfortableness, and misunderstandings. Actually family members are on their own recovery journey as they navigate the mental health system which can be very frustrating and dis-empowering to families due to lack of intentional and meaningful engagement by mental health service providers. One creative way to educate both family members and individuals living with a mental illness or mental health problem is participating in what are called “Recovery Colleges,” sometimes referred to as Recovery and Well-being Colleges. The Canadian Mental Health Association is catalyst for creating Recovery Colleges across Canada.
“Recovery Colleges offer educational courses about mental health and recovery which are designed to increase students’ knowledge and skills and to help them feel more confident in self-management of their own mental health and well-being. For a person, with lived experience of mental ill health, this may help them to take control and become an expert in their own well-being and recovery and move on with their life despite their mental health challenges. This will hopefully help them to achieve or work towards whatever is meaningful in their lives. People may use the college as an alternative to mental health services, alongside support offered from mental health services or to help them move out of mainstream mental health services.”
( https://www.therecoverycollege.co.uk/what-is-recovery/4-what-is-a-recovery-college )
Another thing we have come to realize is that there is a close relationship between mental illness, mental health problems, and substance use/misuse. Up to 75% of people with a mental illness will at some point use substances. People who struggle with an addiction to a substance, up to 50% of them will also be struggling with mental health problem or illness. Both have to be seen as primary “disorders” (creating disorder in one’s life) and thus treated simultaneously. My Father and two of my brothers experienced co-occurring mental illness and addictions. Fourteen months ago I was hospitalized in a non-recovery-oriented “prison” for extrapyramidal side-effects to a new antidepressant and mania. There have been times I self-medicated with alcohol. (So I know what I am talking about in this article from lived experience.) Unfortunately, while the research is plenteous and strong, the practice of dual treatment is hard to come by today. How often have people heard from the addiction services, “Go get help with your mental illness first and then come see us.” Or from mental health services, “Go get help with your addiction first and then come see us.”
I want to end this article with the good and exciting news that before I sat down to type these words (January 6), I did an interview with CBC Radio about the government of Manitoba creating a Department of Mental Health, Wellness, and Recovery!! MLA Audrey Gordon will become the Minister. A passionate and compassionate leader, she is well informed about mental health issues, such as trauma, etc. This is a dream come true for many of us as advocates. Hopefully and finally significant action will be taken to implement the Virgo Report that has over 100 recommendations on how to improve our mental health system in Manitoba and move towards being recovery-oriented. Hopefully she will bring into her circle of influence people with living/lived experience and family members as “we” create a more focused mental health and addiction strategy resulting in improved access and coordination of services. The graphic below comes from Brian Rush, the primary author of the report. As for my use of the word “advocate,” I often ask my audience when presenting on a mental health topic, “Who should be an advocate?” My answer is: “ALL OF US!”
See Rush’s Report and PowerPoint presentation at: https://www.gov.mb.ca/health/mha/strategy.html
Chris was the CEO of the Manitoba Schizophrenia Society (now known as Peer Connections Manitoba) for 25 years, retiring March 31 of last year. He continues in his role as the CEO of the Schizophrenia Society of Canada which he began in 2007. He is a provincial, national, and international leader, often being affectionately called “Mr. Recovery.”