By Leah Harris
“Recovery is a process, a way of life, an attitude, and a way of approaching the day’s challenges. It is not a perfectly linear process. At times our course is erratic and we falter, slide back, regroup and start again… The need is to meet the challenge of the disability and to re-establish a new and valued sense of integrity and purpose within and beyond the limits of the disability; the aspiration is to live, work and love in a community in which one makes a significant contribution.” — Pat Deegan, Ph.D.
I am the daughter of two people diagnosed with schizophrenia and bipolar disorder. They did not recover. They died tragically and young, as far too many people with these diagnoses do. I mourn their loss every single day of my life. And yet I am an unwavering advocate for mental health recovery.
As an adolescent, I attempted suicide a number of times. I also experienced periods of believing I was the secret Messiah, seeing divine messages on the sides of buses and in TV commercials. I once barricaded myself in my room with knives, necessitating a call to the police, who took me away in handcuffs in the back of a squad car. At age 16, I was diagnosed with bipolar disorder, and was told in numerous direct and indirect ways: You have a genetically inherited biological brain disease that you will have for life. You will not be able to manage this disease without lifelong dependence on our systems of care. You will have to put your dreams on hold and avoid all forms of stress in order to be able to manage your illness successfully.
The outcome of these hopeless and disempowering messages was that at eighteen years old, I found myself sitting in a squalid group home, where I was told I would remain for life. I had no high school diploma and no job. I was on the direct track to poverty, chronic disability, and premature mortality.
With the support of my family, I managed to escape the group home. A particularly empathetic and supportive teacher helped me to get educational accommodations. Not only did I graduate from high school, but I went on to college, then obtained a graduate degree from Georgetown University. Yet even with these successes, I felt like a fraud. I hid my psychiatric history from everyone I knew, ashamed, and continued to struggle deeply, even as I “performed” and “achieved.”
In my mid twenties, I heard a different message for the very first time: People can and do recover, from even the most serious mental illness. The idea that I could recover was a revelation to me. It gave me a sense of possibility going forward that I had never felt before. My life was forever changed, for the better.
Today I’m a mother and a mental health advocate. My last suicide attempt was over twenty years ago. I now travel the country doing public speaking and training providers in suicide prevention, recovery, and person-centered care. In short, I’m in recovery.
Recovery is not a one-size-fits-all “model,” but rather an orientation that reflects hope. People can and do suffer enormously, but recovery approaches hold out the possibility for change and growth despite the challenges. Many people in recovery speak of someone who “held the hope for them” even when they had given up on themselves. Recovery means that we never give up on people.
As psychologist Ron Unger notes, “It’s interesting that while recovery from colds happens whether or not we believe it is possible (because our immune system does the work), recovery from disorders like ‘schizophrenia’ may require belief that it is possible, because such recovery typically requires a person’s own effort. People are unlikely to exert this effort if they lack a belief that it may succeed.”
What you believe about the possibility of recovery applies to the policy field as well. If you believe that a certain subset of people with mental health challenges cannot get better, and if you also believe that they are inherently dangerous, then you will advocate for an increase in institutionally-based, paternalistic, and coercive approaches that take away their voice and choice.
Conversely, if you believe that all people with mental health challenges can and do experience recovery, and that they are no more dangerous than the general population, then you are going to promote a very different set of policy recommendations. You are going to fight to beef up our dismally underfunded, under-resourced community-based service systems. You are going to fight for supportive housing, educational, and vocational opportunities. You are going to fight for collaborative, person-centered approaches to treatment that honor an individual’s dignity and choice.
Recovery generally doesn’t happen in a vacuum. There are concrete conditions that facilitate individual recovery. Recovery is much more difficult, if not impossible to achieve, when one’s basic human needs are not met. I can’t emphasize this point enough.
I’ve spent the last fifteen years of my life as part of an international movement of service users, providers, advocates, and family members working to infuse the values of hope and recovery-oriented practice into our mental health and all human service systems. Today’s climate is the most frightening that I have seen. Largely due to public misconceptions about violence and mental illness arising from tragic mass shootings, we are witnessing a dangerous backlash against the slow but steady progress that has been made since the 1990s to promote recovery-oriented systems. The outcome is that there are increasing calls for a return to institutional approaches at the direct expense of the kinds of community-based social services that people want and need.
Calls for a “return to the asylum” reflect our misguided spending priorities in America. America ranks first in health care spending but 25th in spending on social services among nations in the Organization for Economic Cooperation and Development (OECD). Despite our high health care spending, we have dismal health outcomes compared with similarly wealthy nations. Research bears out that spending on the “social determinants of health” has a far more positive impact on overall health than spending on direct medical services alone.
For all of these reasons, I’ve been part of starting a new campaign called Recovery Now! This campaign seeks to educate all Americans that recovery is possible for everyone affected by mental health conditions, and raises awareness that there are specific services and supports that can make recovery not just a possibility, but a probability.
It’s a daunting mission. Major misunderstandings abound regarding recovery from mental health conditions. These fundamental misconceptions fuel anti-recovery sentiments expressed by prominent advocates and politicians. The following are some of the primary myths I have encountered.
Myth 1: Recovery is only for the “high functioning.”
Research simply does not bear out this assertion. Said Dr. Richard Warner, clinical professor of psychiatry at the University of Colorado, in a recent editorial: “It emerges that one of the most robust findings about schizophrenia is that a substantial proportion of those who present with the illness will recover completely or with good functional capacity.” A whole slew of other studies have found similar results.
Some people are skeptical because they have not seen their loved ones experience recovery. Yet in the last fifteen years, I have heard literally hundreds of stories like Lyn Legere’s. Lyn was diagnosed with schizophrenia and was trapped for decades in a cycle of costly inpatient hospitalizations and despair. Today, she is working, a homeowner, a taxpayer, and is helping others to achieve recovery through education and employment.
Lyn and I are living proof that recovery is possible. And we’re not alone. We need to hear and share more of these stories, but many people understandably refuse to “come out of the closet” due to stigma or fear of discrimination. I get it. When I first had the opportunity to tell my story, I wanted to publish it under a pseudonym. But the gentle support of another advocate gave me the courage to use my real name.
Another argument against recovery for all is that there are some people who can’t or won’t voluntarily accept treatment or services. Yet there are plenty of evidence-based and proven ways to engage people, such as motivational interviewing, or employing peer support workers who had once been homeless themselves to do homeless outreach, but they’re vastly underutilized.
Today we have a situation where our systems and services still have far to go to promote recovery for all Americans living with mental health conditions. But that doesn’t mean that recovery should be discarded as an orientation. I believe it means we should fight harder for real change.
Myth 2: Recovery is stigmatizing.
If the evidence-based concept that people can achieve a meaningful life after diagnosis is stigmatizing, then we are all in huge trouble. What is stigmatizing is the way that we are talked about in public discourse. Today, the prevailing views expressed in the media to the American public are that people living with mental illness are a) dangerous and to be feared; or b) helpless, child-like creatures who should be paternalistically cared for. Both stereotypes have the effect of perpetuating “social distancing,” which is, ironically, one of the things that most impedes recovery. Over and over, when talking to people in recovery, a common denominator in their story is a nurturing relationship with someone who saw the whole person, not merely a “walking illness.”
People with mental illness contribute in numerous ways to society, and many have extraordinary artistic and creative talents. But these positive realities are almost always obscured by the prevailing narratives that focus exclusively on deficits and perceptions of dangerousness.
Since we’re talking about stigma, the number one way to reduce stigma, says leading researcher Dr. Patrick Corrigan, is the “contact” method: knowing or hearing the stories of ordinary people you can relate to who are living and working in recovery. Yet how many of these stories do we hear in the major media? If we do make the papers, it tends to be either as the victims or the perpetrators of a violent crime. If it bleeds, it leads. The stories of thousands of Americans with mental illness living everyday lives in their communities don’t tend to make the headlines, though they would greatly help in the fight against stigma and discrimination.
Myth 3: The word ‘recovery’ is synonymous with cure or absence of symptoms.
One understanding of recovery is “a complex, dynamic, and enduring process rather than a biological end-state described by an absence of symptoms. Recovery is, in its essence, a lived experience of moving through and beyond the limitations of one’s disorder.”
That is the beauty of recovery-oriented practice: it provides continual opportunities and encouragement to learn about oneself and develop ever more personalized strategies for working with troubling symptoms or experiences, especially during difficult times, so they do not become permanently incapacitating.
I’ve learned many skills for working with my own challenges and have a crisis plan in place should things go downhill for me. I needed to use it in 2009 when I experienced my last serious crisis following a difficult divorce. Luckily, having the plan in place prevented me from experiencing significant, long-term disruptions to my life as a parent and as an advocate. While I did have a setback, I never considered myself to be “out of” recovery.
Recovery is not about achieving a “perfect” life. No one I know, with or without a diagnosis, has one of those.
Myth 4: Recovery is not realistic for all.
Some people say that it’s not realistic to expect recovery from stage four cancer, so we shouldn’t expect it for someone who has been diagnosed with schizophrenia or bipolar disorder. Yet the experience of mental illness is not in any way like the experience of cancer, other than that it can lead to early mortality. When I had a breast cancer scare in 2008, I received nothing but compassion from providers; offers of peer support to help navigate the many appointments, tests and biopsies that followed; and frequent calls and visits from friends and loved ones as I nervously waited out my results. Few among us experience that kind of outpouring of kindness during a mental health crisis.
If we must draw a comparison, I’d say mental illness today is more like HIV/AIDS in the 1980s and 1990s, when ignorance reigned supreme, when the virus inspired disgust and terror in people, and the media was full of stigmatizing and degrading stereotypes about HIV positive people. In recent years, HIV-AIDS been downgraded from a life-threatening emergency to a “chronic, manageable disease.” Today, we’re no longer scared of people living with HIV. We got there largely as a result of patient advocacy demanding dignity and improved care.
In mental health, we have a long way to go in this regard, when people with serious mental illness are still dying 25 years younger than the general population, due to preventable health conditions, or dying by suicide in droves.
Despite the formidable challenges, I defy anyone to tell me what is and isn’t realistic. If things are to change, we must have an “unrealistic” hope for what could be. Individual and social change happens when people have a vision that goes far beyond the current circumstances.
Everyone can have a life worth living, a life of dignity in the community. I for one will keep fighting to ensure that we create the conditions that ensure recovery as a reality for as many people as possible.
Leah Harris is the campaign coordinator for Recovery Now! a new campaign to “advance innovative strategies to improve the quality of mental health care, promoting recovery for all Americans affected by mental health conditions.” www.mentalhealthrecoverynow.org