By: Carolann
Introduction
In this episode, we turn our attention to common myths and misconceptions about mental health and substance use disorder treatment. These misconceptions shape policies and treatment methods, adding to the stigma and discrimination in healthcare. This post will discuss how these myths affect people like Acheron and their caregivers and why we need change.
Recap
Acheron was a loved teacher, father, author, blackbelt, and spouse dealing with Alcohol Use Disorder, Autism, ADHD, depression, and anxiety. His decline from a respected leader to someone neglected by the healthcare system highlights the impact of treatment myths and discrimination.
Misconception 1: One Size Fits All Treatment
Many believe there is one solution for all mental health and substance use disorders. Residential rehab is often seen as the best option, but it doesn’t have better long-term results than cheaper treatments. The provinces’ funding may reflect the unwillingness to fund treatment with little evidence that they work. Publicly funded rehab beds are scarce, with wait times up to a year. For instance, Acheron found a rehab center with an 8-month to 1-year wait, requiring sobriety and weekly testing before admission. If someone can stay sober for that long without treatment, why go to rehab? Acheron, sober for about a month, didn’t want to “go away” anymore. Though I felt that an inpatient stay had become necessary to stabilize his medications and allow his brain to heal, this was not a hill I was willing to die on since there were no publicly funded beds open for him.
Next to rehab, 12-Step programs like AA are viewed as the next best option but lack strong evidence of effectiveness. Success rates are estimated at anywhere from 12-48% after a year. The reason for that wide band is that there are few good studies. The studies that show higher effectiveness may not reflect the estimated 40% of people who try it and quit, and the most recent, larger study focused on structured 12-step facilitation like one would find in medical settings, as opposed to the straight peer-to-peer support that Acheron had access to without being admitted into a formal program.
Acheron tried AA and struggled with its religious aspects and lack of focus on his biological disease, specifically the disdain for anti-craving medications. He also felt discomfort around the concept of sponsors, specifically the unacknowledged “13 step”, where some men use their position of power as a sponsor to victimize vulnerable women. Acheron attended SMART meetings for several months. These often were not led with any focus, and the topics discussed often weren’t important to his recovery. He mostly found SMART to be too unstructured to be helpful. He wasn’t able to connect with people in either setting, probably side effects of having autism and attending meetings virtually because of Covid. Connection is where these programs seem to have strength, and without connection, it wasn’t effective.
Misconception 2: “Readiness” for Treatment
Another myth is that people must be “ready” for treatment to work. This myth delays or denies care until the person shows motivation. However, research suggests “readiness” alone is not a reliable predictor of treatment success, and more research is needed to bolster a policy change. That research requires money.
The one thing I know for sure is that Acheron didn’t want to be ill, didn’t want to be a burden, and didn’t want to die. Yet, every time Acheron relapsed, the narrative was that he wasn’t “ready,” or “he didn’t want to change” or “he hadn’t hit rock bottom yet.” Rock bottom is a concept sourced from the 12 Step groups and there is no evidence in studies, but all of the policy in North America is based on this concept.
This victim-blaming narrative affected Acheron’s care. He wasn’t given regular blood tests because “we know he’s still drinking.” Doctors would not stop testing the blood sugar of people with diabetes because of their poor dietary choices, but they would not regularly test his liver function because they didn’t see the point. (Spoiler alert, he died from a complication of liver failure that would have been found had anyone known his liver was failing!) When his cognitive function declined and he developed severe neurological symptoms, I begged for help. He was not provided with Dementia or Parkinson’s testing because his symptoms were “probably from the alcohol.” Add insult to injury, I was excluded from his care for a time because he was making “memories” up and was angry with me.
Misconception 3: Involuntary Treatment Doesn’t Work
The flip side of this “readiness” coin is the belief that involuntary treatment doesn’t work, thinking people must be willing for treatment to be effective. However, research and real-world experiences show a different story.
For individuals like Acheron who have complex mental illness and addiction issues, navigating the complex system involves periods of resistance or going back and forth about treatment. Despite our family’s efforts to encourage and support him, Acheron struggled to consistently engage with treatment due to the profound impact of his conditions on his cognition and behavior.
In Acheron’s case, the assumption that involuntary treatment wouldn’t work limited the options available to him. Despite clear signs of deterioration in his mental and physical health, Acheron’s autonomy was prioritized over the urgent need for intervention. This reluctance to intervene forcefully, even in the face of imminent harm, reflects a broader societal reluctance to acknowledge the severity of mental health and substance use disorders and the salvaging of quality of life.
However, research suggests that involuntary treatment can be effective in certain circumstances, particularly when individuals are unable to make informed decisions about their care due to the severity of their condition or the presence of cognitive impairments. Involuntary treatment has been shown to help stabilize individuals in crisis, reduce harm, and create recovery opportunities.
Misconception 4: Non-Compliance Equals Lack of Desire to Get Well
Non-compliance with treatment is often seen as a lack of desire to get well. This view ignores the complex factors affecting treatment adherence.
Acheron’s non-compliance was misinterpreted as lack of motivation and lack of commitment. There were always hoops Acheron had to jump through to get service, and if he was too depressed, ashamed, or anxious to do those things, then he must not want to get well badly enough. Since non-compliance is framed as a personal failing and each obstacle made it harder for him to seek help, his behavior reinforced the belief he didn’t want to get well.
Misconception 5: Substance Use Disorders Are Character Flaws
Even well-meaning doctors often see substance use disorders as moral failings, not medical conditions. This misconception fosters stigma and discrimination and creates barriers to treatment.
Despite facing significant challenges, including co-occurring mental health conditions and neurological disorders, Acheron faced judgment instead of compassion. His alcohol struggles were seen as character flaws, overlooking the biological, psychological, and social factors influencing his behavior.
Misconception 6: Recovery Depends Solely on Willpower
Many believe recovery depends only on willpower and motivation, ignoring addiction’s complex relationship between biological, psychological, and social factors.
Acheron’s doctor prescribed the cessation drug Naltrexone to address his alcohol use disorder’s neurobiological aspects. While the drug’s studies showed that removing intoxication cues would lead to decreased drinking, Acheron’s response was atypical in that his consumption increased dramatically. His doctor would not believe that this was a side effect of the medication, though to me the cause-effect relationship was clear.
Despite his concurrent diagnoses of depression and anxiety, medical professionals often prioritized treating these conditions separately from his alcohol use disorder. Acheron’s mental health issues were treated separately from his substance abuse, failing to address his overall health.
Systemic barriers hindered access to comprehensive care. Institutions like the Royal Ottawa have strict criteria that prioritize imminent danger, excluding individuals like Acheron facing a mental health crisis of a different nature. The assumption that his non-compliance stemmed from personal choice as opposed to a consequence of ineffective interventions, systemic shortcomings, and the overwhelming burden of his conditions, meant no holistic or compassionate approach to his treatment was available.
Advocacy for Systemic Change
Caregivers and advocates must challenge these myths and advocate for systemic change. We need comprehensive, evidence-based approaches to mental health care, addressing addiction’s underlying factors and providing timely interventions. By challenging stigma, promoting education, lobbing for funding for studies, and advocating for policy reform, we can work towards a more inclusive and compassionate mental healthcare system.
Conclusion
Navigating mental health care in Canada is challenging, worsened by myths and misconceptions. Acheron’s story highlights systemic barriers and stigma. As we strive for a fair and compassionate mental healthcare system, remember that behind every statistic is a human story of resilience and hope. Together, let’s challenge misconceptions, advocate for change, and support those affected by mental health and substance use disorders.