Serious Disconnects
Kelly Gunning, M.A.
Operations Director, NAMI Lexington
I was baptized in the waters of severe mental illness (SMI) 16 years ago. It wasn’t a baptism in the first person, as I was not actually the person who had the signs and symptoms of the illness and I was not the one who directly suffered each terrifying nuance of the illness. I have suffered serious bouts of depression and had dysthymia for most of my life … there were some very dark days but nothing like what my son was experiencing. With my son’s illness I became submerged in a parallel universe much like a dark, murky underwater world – disoriented and drowning in fear, grief and concern, but only able to watch, helplessly, as my son repeatedly went under. Today, 16 lonnng years later, I still find myself paralyzed for the most part and unable to save my son from what seems to be one of the cruelest of fates, indeed, constant, untreated psychosis.
Don’t misunderstand, it is not as if I have literally just stood by and watched this nightmare unfold, in fact; quite the opposite. First, I tried to learn everything I could about my son’s “condition”, that was the first experience in a series of constant ‘disconnects’, since for the first 8 years no one could agree on what was wrong with my son. Was it drug-induced psychosis? Was it bipolar illness? Was it (gasp!) schizophrenia? (Yes, I actually had one physician tell me he didn’t want to label my son’s “condition” schizophrenia because that was “just too terrible” and “offered so little hope”). It was only after my son’s fourth involuntary hospitalization and by now, years of symptoms, that it was decided that he did have paranoid schizophrenia. Armed with a definitive diagnosis and determined to help my son I encountered what I call the “rest of the nightmare”; ‘disconnect’ number two…the maze of the public mental health system. Unlike most illnesses, mental illness doesn’t walk in the front door of the health care system, nope; it comes in the back door, down the dimly lit alley of the criminal justice system. What other medical illness do you know of that demands the person suffering must arrive in handcuffs, in the back of a policed car? I would think to myself, ‘So (hmmmm), if this is an illness, why is he being treated like a criminal?’ This was and is today the most startling ‘disconnect’ of all. To have a serious, life-threatening illness and to be treated like a criminal simply cannot be our best option in this day and age. I know there are times when very ill individuals must be involuntarily taken into treatment, either for their own safety (usually due to extreme behavior or self neglect), or because their behavior is threatening to others. Today, we know these behaviors are symptoms of a brain disease. We often see these same types of behaviors in Alzheimer’s patients and they don’t come to treatment in handcuffs escorted by the sheriff. Is it because we talk about Alzheimer’s being a disease and schizophrenia as a disorder? People would be outraged if individuals with Alzheimer’s or brain injuries were jailed at the rate of the seriously mentally ill.
I think I have developed some serious insight into what triggers many of the ‘disconnects’ encountered when dealing with the whole spectrum of mental illness. We do not all speak or understand the same language when it comes to mental illness. I recently attended a subcommittee hearing on abolishing the death penalty for persons who are determined to be mentally ill at the time of the crime. This hearing captured a microcosm of the ‘perfect storm of disconnects’. Presenters interspersed their ‘expert’ testimony with words like ‘disorder’ and ‘dysfunction’ and ‘mental illness’ and subcommittee members expressed frustration over what was a ‘disorder’ and how was that different from ‘illness’ and ‘was it the person’s fault?’ ‘or in their control?’ ‘Or what?’ People started quoting the DSM-IV and the various synonymous renderings that we grapple and struggle with to name these myriad human conditions. Wham!! It hits me like a ton of bricks…no wonder there is so much misunderstanding, so many seeds of discord and interruption…nobody can even decide how we are going to talk about “it”, let alone treat “it” or the individuals who have “it”.
After the hearing experience I couldn’t stop thinking about why it is that among all the players in this mental illness conundrum, we can’t seem to come up with a language to use in talking about it. Enter synchronicity; the next week Dr. E. Fuller Torrey publishes an article in the Catalyst newsletter about this very topic. In the article Dr. Torrey talks about why we don’t call people suffering from schizophrenia and bipolar illness “patients”. He talks about the various terminology used such as; “consumer”, “survivor” and most recently, “person with lived experience”. He talks about SAMHSA’s role in determining (and funding) politically correct, universal, person-first terminology.
It seems the current political correctness and funding cycle only wants to acknowledge the end of the mental illness spectrum known as recovery. I support and work for recovery everyday but I also know that within the entire spectrum/continuum of mental illness there are people like my son who lack insight into the fact that they have an illness and refuse the basis of recovery … treatment and support.
Wham!! Here come the bricks again and I realize that until we can all begin to accept and adopt some baseline beliefs, such as; “Schizophrenia, bipolar and depression are brain diseases, i.e. medical conditions - as evidenced by two decades of overwhelming scientific study and proof. These diseases are experienced in different levels of severity and life impact across a spectrum. There are, within this spectrum, cohorts of individuals who lack insight and do not believe they are ill – thus treatment is more difficult and often times impossible, without being forced. Many people engage in and benefit from treatment with medication, adjunct therapies and support. Individuals engaged in wellness, recovery and illness management could recover and thrive, much like people with any other medical condition such as; diabetes and cancer. Until all the stakeholders can agree on some basic information and vocabulary we will always endure a disconnected system because we will not have the common communication interface needed for understanding.
I see this disconnect happening in our NAMI organization locally and nationally. I believe we have experienced some organizational identity crisis among members as a result of it. NAMI initially was formed as a family support, education and advocacy entity which focused on family members in their struggle to understand what was happening to their loved one with serious mental illness. In 1980, National Institute of Mental Health (NIMH) received a billion dollars to study mental illness and The Decade of the Brain research initiative was born. This is where the next big ‘disconnect’ occurs, I believe. Two important things happened that have caused confusion and misunderstandings, which weigh on our ability to understand SMI across systems. Just as NIMH is actually confirming the biological, i.e. medical, basis of brain diseases; new atypical antipsychotic and anti-depressant medications roll out with (perceived) less debilitating side effects. People who had suffered the zombie-like states, tardive dyskinesia and other anti-cholinergic side effects inflicted on them by older anti-depressants and antipsychotic/neuroleptic drugs were now becoming much more functional and engaged in life - thus the recovery movement was born. The fact that many folks were now able to experience relief and improved symptom control opened up the possibility that there could be sustained periods of wellness and illness management was fast becoming the norm. The folks who were now managing their symptoms and doing well were establishing their identity and collectively decided to be called ‘consumers’. With consumer groups, came consumer rights and the call for inclusiveness rang out.
In groups like NAMI consumer councils were started, recovery research and education was coming out and consumer specific groups were emerging and thriving. The thriving consumer movement was and continues to be a huge growth sector for NAMI locally and nationally. Rightfully so, in my opinion, monumental effort and resources were and are poured into program development and opportunities for this ever- growing population of people in recovery. The disconnect comes when this new-found population of ‘person’s in recovery’ do not much care for the notion of being defined as “mental patients” and rail against medical terminology and approaches to manage what would now be labeled, by and large, “disorders” or “lived experiences”. This causes a disconnect because the family education program in NAMI, Family to Family, clearly teaches the medical model and all the parents (myself included) had adopted the ‘no blame,’ medical description of serious mental illness. We were taught to treat our loved ones as if they had cancer or any other life-threatening illness (there is still a disconnect there though because folks with cancer do not exhibit injurious behavior (symptoms) and are not treated like criminals when needing hospitalization or treatment). So, we had a situation where the social climate was at odds with the medical advances being made and it was simultaneously being decided that it was politically incorrect to refer to anyone with a mental illness as a “patient” AND to abandon a medical model of treatment in favor of a recovery model of treatment. It was decided that all treatment needed to be based on person-centered, self-directed, recovery models of care. This was and is all very confusing. What happens to those who are not able to self-direct due to lack of insight? To really be inclusive and fair, I believe we must acknowledge the entire spectrum of illness.
These disconnects occur because, clearly, not everyone fits into the category of being in recovery or even in treatment. Half of the people with schizophrenia have no insight that they have a brain disease, (Torrey 2010) they refuse treatment and because they refuse treatment, they do not experience recovery. This is the story for my son. It is my belief that as long as he refuses treatment he cannot experience recovery. I do know recovery is possible WITH treatment, self care, illness management and support because I see it every day in the peer operated center where I work and I experience it personally in managing my depression.
Dr. Torrey points out in his article that schizophrenia is a disease, clearly established in more than a hundred recent, scientific studies. He points out that most individuals living with schizophrenia and other serious mental illnesses are receiving medical disability benefits such as Supplemental Security Income and Social Security Disability Income. They are receiving these benefits because they have been medically diagnosed with a brain disease. He goes on to point out the recent pressure for parity under insurance laws – parity is based on being treated equally with other diseases, not ‘disorders’ or ‘lived experiences’. (Torrey, 2010) I don’t know many people who would doubt that Torrey is the expert when it comes to unbiased, pure research devoted specifically to serious mental illnesses. Jim Pavle, Executive Director of the Treatment Advocacy Center, writes in this same newsletter, “Schizophrenia and bipolar illness are symptoms of brain disease just as heart attack is a symptom of heart disease”.
It is no wonder we cannot come to agreement on how to create a system to best treat and accommodate people with serious mental illness, let alone keep them out of the criminal justice system. Is it an illness? Is it a disorder? Is it an illness with behavioral implications? Is it curable? Manageable? Is it in a person’s control? What about the seriously ill with no insight? How can some folks experience recovery and some cannot? To create an effective system we have to be able to communicate across systems. To this day, we can’t even seem to come up with basic agreement on the existence of a spectrum of illness or to develop an inclusive terminology within the mental health community, alone. How will we create a universal understanding of the basic facts when we can’t even come to agreement on what mental illness is and what it isn’t or what to call people who have it? We seem more immersed in being politically correct than we are in deciding we need a baseline understanding of serious mental illness and an agreeable language we can use across systems to communicate about it.
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To read Dr. E. Fuller Torrey's article in the Treatment Advocacy Center's Fall newsletter click here. Also read page 6 for TAC's views on mental health laws in Kentucky:
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