For many of us, December was packed with office parties, school spirit days, lots of shopping and questionable spending practices, navigating complicated family dynamics, cold and flu season, trying to find light amidst the darkest days of the year—in short, the ups and downs that come with a fulfilling life. We may have made questionable choices, drinking too much at the office Christmas party, eating our body weight in fudge, or spending too much on gifts and telling ourselves we’ll figure it out in the new year. We consider this our right as adult humans—living our lives and living with the consequences of our decisions. I myself navigated my first holiday season without my dad, who passed in April, and the first as an officially divorced mother with shared custody, two major life events that have made me feel a bit off kilter as well. On top of all that, I submitted two grants this funding cycle, had a sick kid, pulled off my third move in as many years, and hosted the holiday surrounded by boxes. The only thing constant in my life is chaos, but I would choose the roller coaster of my life over the alternative I narrowly escaped as a young person—a life as a person diagnosed with a serious mental health condition who’s been conditioned to believe that stability is more important than pursuit, that staying small will save us from ourselves, and that professionals know best what is good for our lives.
Stabilization and symptom reduction are primary goals of mental health treatment, especially for those conditions which are seen as more disabling and biomedical in nature. For example, in Kraepelin’s model of schizophrenia, the disorder is seen to be a deteriorating illness, and the best possible outcome cast as ‘stability.’ But I’m living proof that a primary goal of life and thus of psychiatric treatment, is not to stay inside to avoid the weather but learn to dance through the storms. This is a core tenet of the modern recovery movement. Although this is not a new concept, it is most certainly not yet fully realized. Recovery is often thought to be a remission of symptoms and a return to stability; however, the process of recovery that involves pursuing important life goals and finding meaning in one’s life activities has proven to be much more realistic and meaningful in my life. This means that I go through periods of increased stress and symptoms, but I do my best to not let this get in the way of pursuing what I want out of life. I have tried, failed, and tried again more times than I can count. I want psychiatry to endorse this dignity of risk for all people brave enough to walk through their doors. We deserve to embrace the messiness of life as much as the next person. Full and fulfilling lives are not devoid of instability. In fact, some of the greatest thinkers and artists across history have lived lives far outside the confines of ‘a simple, ordinary life.’ They may make choices that others might see as extreme or misguided, but they do so of their own volition understanding that they will have to live with the results.
The Webster’s dictionary defines stable as an adjective meaning “a) firmly established: fixed, steadfast; b) not changing or fluctuating: unvarying, and c) permanent, enduring.” This is in contrast to much of what I have learned about life thus far, and certainly not a state of being to which I aspire. For a person with a serious mental illness to achieve what a mental health professional might call stability, they may recommend applying for disability benefits, maintaining a schedule conducive to attending frequent medical appointments, and making life decisions from a risk-averse perspective. However, in reality this often means a life living below the poverty line, with few social connections, and pervasive self-limiting beliefs (e.g., analyses my colleagues and I are currently writing up show that many people with serious mental illnesses who receive services in Connecticut endorse the statement “getting a job needs to wait until I have achieved more stability in my life”). People with serious mental illnesses have lower educational attainment, higher unemployment, and lower lifetime earnings than the general population. This is not the best we can hope for as people with serious and life-changing lived experience of mental and emotional distress, and it is unfortunate that mental health professionals are often willing to settle for this as a positive outcome.
Paternalism in health care generally, and mental health care especially, is rampant. Of course, people in the helping professions want to help. They don’t want to see us suffer. But limiting our dreams to protect us from failure isn’t helping—it’s saying you know best. For example, while the majority of people with serious mental illnesses want to work, their clinicians often report that their goals of competitive employment are not realistic. Two-thirds of individuals with serious mental illnesses report a desire to work, however, the vast majority (80-90%) are unemployed, with serious consequences not only for themselves but for society as a whole—people with psychiatric disabilities are the largest category of beneficiaries of Social Security Administration disability benefits. Even more than the huge financial consequences of this, I am left wondering what innovations and contributions we are missing out on by treating people with serious mental illnesses as inherently disabled. As Patricia Deegan, an international leader in the recovery movement, clinical psychologist, disability rights advocate, and person in recovery from schizophrenia, wrote about being first diagnosed with schizophrenia at age 18, “You have a disease called chronic schizophrenia…. If you take medications for the rest of your life and avoid stress, then maybe you can cope… crushing my already fragile hopes and dreams and aspirations for my life. In essence the psychiatrist was telling me that my life, by virtue of being labeled with schizophrenia, was already a closed book…. The goals and dreams that I aspired to were mere fantasies according to his prognosis of doom. When the future has been closed off in this way, then the present loses its orientation and becomes nothing but a succession of unrelated moments.”
“Lacks insight,” is scrawled across many of my chart notes from my late teens and early twenties, a fact I know to be true because I demanded a copy of them for a book project that has not (yet) come to fruition, another “unrealistic goal.” But many things I have accomplished in my life—including completing a PhD, running a marathon, and landing a gig as a researcher at Yale—seemed unrealistic until they came to be. I am profoundly grateful that I did not take these professional’s opinions of my ambitions to be gospel and instead used them as fuel for the fire to prove them wrong. Limiting someone’s dreams based on one’s professional opinion of what is possible for people with serious mental illnesses is misguided at best, and at worst, it may even violate the Hippocratic oath, in that a helping professional should aim to ‘do no harm.’ The metaphorical clipping of a person’s wings in fact does do harm and cages people in the confines of ‘stability.’
To be sure, the dignity of risk means we will sometimes find ourselves in lives that seemed to have crumbled around us. I know I have more than once looked around after a particularly challenging period and wondered if I have destroyed everything. However, while I may not always emerge the fire unscathed, I am a phoenix rising from the ashes, having burned away that which no longer serves me. It is only through the living of life that one learns its lessons. Please don’t think you’re helping by coddling us. It’s actually insulting, and many people who experience extreme emotions and mental states are capable of far more than they’re currently achieving under current treatment paradigms.
If you’re a mental health professional, and your client dares to dream, please consider suspending your judgment and supporting them to find the next step towards a lofty, seemingly unrealistic goal. You don’t have to believe in us—that’s your choice. But helping someone to find the next visible stepping stone towards a destination still hazy in the distance is also a choice, and I am willing to bet that you’d be surprised at the results.
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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.