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Why do we say Recovery in Mental Health?

Why do we say Recovery in mental health? Why aren’t we Colorado Cured or Colorado Recovered? 

 

For some people, the word recovery can be confusing. Many times people associate the word only with substance use treatment. But, the word has also been important for recovery from mental health disorders. 

 

September was National Recovery Month and SAMSHA says, “National Recovery Month is a national observance held every September to educate Americans that substance use treatment and mental health services can enable those with mental and substance use disorders to live healthy and rewarding lives. Now in its 31st year, Recovery Month celebrates the gains made by those living in recovery.”

 

It is important to tell stories of recovery and reshape beliefs around how we see mental health disorders. Mental Health Colorado has covered many personal stories that are hope-inspiring and uplifting. For great recovery stories visit: https://www.mentalhealthcolorado.org/

 

There are often different takes on the word depending on the context and population. Professionals use the word clinically, advocates use the word as part of a grassroots movement, and people who struggle with substance use disorders use the term to describe a state of being in sobriety. 

 

In the 1930’s Alcoholics Anonymous began using the term to describe sobriety among a fellowship of participants. Recovery is now an integral part of how a person describes and connects with living a good life without substances and the concept is closely related to how recovery is viewed in mental health. 

 

In the late 1980s and ’90s, the recovery movement in mental health began. It was led by mental health consumers/clients/ex-patients who wanted to see a change in the perception of what successful mental health treatment means. Without this client-led movement, treatment may have looked much different than it does today. 

 

Before the movement, patients with serious mental health disorders and their families were oftentimes given a poor prognosis. There is a dark history in the US and other parts of the western world of patients being treated poorly, institutionalized, and stigmatized. There was no focus on improving the quality of life nor any hope for recovery from their illness.

 

 The mental health recovery movement really expanded the perception of what people who live with serious disorders like schizophrenia and bipolar disorder are capable of. 

 

The CEO of Colorado Recovery, Ruth Arnold, worked on a Recovery Philosophy roll-out in the early 2000s while working at Mental Health Partners in Boulder, Colorado. The Boulder community still refers to this manifesto when they are thinking about how to help people. 

 

Here is what was developed in partnership with clinicians, clients, family members, and community: 

 

Recovery in mental health can be described as the intentional constant pursuit of living life to its fullest.  It is a process that is unique to each individual and grows out of a culture of support and the gradual awareness of one’s own personally meaningful roles and goals.  It is the awakening and realization of dreams through the process of healing and the exercising of personal power to secure a full and satisfying life.  We believe that recovery is not only possible, it is probable, because of the strength of the human spirit and the amazing resiliencies within every person.

 

Ruth personally believes that “recovery is the pursuit of a meaningful life beyond one’s mental health diagnosis and learning to manage the mental health symptoms sufficiently to allow one to get on with living. To stop seeing one’s role in life as ”a person with a mental illness or mental health condition”, but instead to see the possibility of a role beyond that and in spite of that, and developing sufficient perseverance to pursue it.”

 

It is important to think of recovery as an active state or process, a doing rather than a one-time event. Stay in the moment, know that wherever someone may be in that journey, it is cumulative knowledge that is gained from setbacks and struggles. At Colorado Recovery we are blessed to witness and be a part of the journey. People who live with mental health challenges are some of the most empathetic and resilient people around and they have many gifts to bring to the world. 

Readings on Schizophrenia

I have had the pleasure to discover and study some of Dr. Richard Warner’s books (The Environment of Schizophrenia, Social Inclusion of People with Mental Illness and Recovery from Schizophrenia) and they have absolutely changed my outlook on mental illness. My 20-year old son has been diagnosed with schizophrenia two years ago. The following are some of the things I have learned from Dr. Warner’s books:

1. The books have changed my mindset from the start, by stating that 25% of people with schizophrenia actually recover. Many of us know what a cloud of despair can be cast on parents and relatives of schizophrenics. When my son was first diagnosed, I was given sympathetic looks and a list of support groups. I can’t begin to tell you how many times I was told, “Good luck!” Support groups were often equally discouraging. I am sure they can be useful in some situations, but the ones I attended were full of sad people with very few answers, who desperately wanted a way out. The main question was, “How can I – as a parent – survive this?” Many were telling me to put my son in an institution or send him out on his own, but I just couldn’t do it.

Finally, my son had to be hospitalized for a month. Even there, I received no word of hope. The person who was given temporary guardianship of him at that time thought she was being reassuring when she told me that he will most likely relapse and the second time around we will have a better chance to obtain permanent guardianship. And then I read these books. There is a chance my son might recover! Finally, a ray of hope.

2. The second thing that helped me in thee books is the warm and sound approach to recovery. Having lived in many third world countries, I can see how schizophrenics can receive greater social acceptance and more opportunities for work there. Even in Italy (where I was born), medical institutions are far from the cold, sterile approach I found in this country. Here my son has been arrested three times, handcuffed twice, pepper-sprayed once. Most doctors and therapists I have seen have been distant, measuring their words as if they were following a text book. This ordeal has actually drawn me closer to my sister (who lives in Italy) because I have called her at times of crisis, finding comfort and support in the natural motherly wisdom we have both known as children and have tried to apply in our families. These books have helped me to recognize the importance of a warm family environment, which is mentioned but rarely stressed in most publications (where the emphasis seems to fall on medications).

3. I have also appreciated Dr. Warner’s insights on cigarettes and marijuana usage. My son uses both. He started smoking cigarettes at the hospital, where they gave them out like candy. About the marijuana, all the professionals I have seen have warned me that it will have terrible effects or at least will cancel out the medications he is taking. My son told me it’s the only thing that helps him. He says it simplifies his thoughts and, when he uses it, “the voices are not angry anymore.” You may wonder why he still hears voices while he takes medications. I wonder too, and I told the psychiatrist who has made no effort to change her prescription. I suppose she knows what she is doing. My son doesn’t want to change doctors and I am just happy he accepts the medications because initially he didn’t. At any rate, Dr. Warner’s books have relieved my own paranoia about my son’s marijuana usage. Now that I know the sky is not going to fall, I can concentrate on what Dr. Warner advises to do in these cases – in his words, “invest more in those programs that help a person find a place in the world, that help people make friends and fulfill useful social roles.” I have been trying to prevent his boredom, include him in engaging activities (he does pole-vaulting at a local college), encourage situations where he can meet friends, and enroll him in work-training programs sponsored by the Department of Rehab.

There is much more, and I might have to write again at a later time. For now, I am deeply grateful for Dr. Warner’s efforts to bring concrete hope and solutions to patients and their parents.

S.C.

“Shssss……(she said so quietly)……I am on medication!”

She was 17 years old and came by the booth that I was hosting on mental health challenges.   Even before she whispered this to me, she had looked around to make sure no one else was listening.  I leaned in and she told me that she has been living with depression and finally she talked with her mom and found a therapist and therefore the medication.  Her depression had clinging to her spirit weighing her down for a long time.  But now she is engaged with others, a member of a church youth group, and has even had the courage to tell one of her closest friends of her struggles with depression.

I felt privileged that she would talk with me, a stranger, although I was at a church conference and I was at a display on mental health.  She seemed relieved to be able to speak, to name her situation, and to find a listening heart.

There are so many people, including young people, who are living in the shadow of mental health challenges.  They are in our families.  They are in our faith communities.  How can we offer the hospitality of spirit so that the sharing of such stories as the teenagers can be balm for healing and offer hope?

One of the easiest ways is by using caring and compassionate words in a clergy person’s sermons, homilies, or prayers.  While many congregations are not known for such welcoming of naming mental health challenges, they can be.  Using the words, “we pray for those who are living with bipolar disorder, schizophrenia, or major depression,” or “we pray for those who are battling addictions or mental illness,” or “we pray for those who are affected by mental illness, including their families and friends,” can be an open door for people who are living in the isolation of silence and to come out and speak or at least realize they are not alone.

When have you experienced such a welcome?  When has hospitality opened a door for you or someone you love to find a place where their spirit can be at home?  I don’t really know if the 17 year old girl felt better talking with me.  However, I surely did feel connected.  I have found myself telling this story so others may also be attentive to those times when chance encounters can lead to break the silence.  Out of the whisper a truth was spoken that led from vulnerability to strength.

Alan Johnson

 Interfaith Network on Mental Illness

 

People recover from schizophrenia

You won’t hear psychiatrists say this often (and I am a psychiatrist): People recover from schizophrenia.

Something that has long been accepted as a truism by psychiatrists around the world is a belief, promulgated by Emil Kraepelin, the director of a German asylum in the late 1800s, that schizophrenia has an inevitable downhill course. Kraepelin called the illness “dementia praecox” (progressive illness of early life) to hammer home this idea. The concept is reinforced for psychiatrists by the fact that they rarely see people who have recovered from the illness; the recovered patient just stops coming in to see them and returns to a normal life.

Some events transform our professional lives. The first in my career was a conference in Palo Alto in 1977. I was a raw, young psychiatrist when Loren Mosher and his colleagues presented the results of the Soteria study. At that meeting I learned a truth from which my training had protected me – that people can recover from schizophrenia without medication.

Soteria was a therapeutic milieu for young people who met criteria for schizophrenia that was designed as a gentler alternative to the psychiatric hospital. The program, established in a house on a street in San José, California, offered a calming, respectful environment that tolerated individual differences. Staff were encouraged to treat residents as peers and to share household chores, creating an ethos of shared responsibility for running the house and being part of a mutually-supportive community. AnTo post a response to this blog please visit The Recovery Trust.

The Recovery Trust, a Colorado-based nonprofit, has added a new resource for families in need of education and support. It is a free, secure, online forum through which family members can join with others in the same situation.

The forum is moderated by a team of mental health professionals, psychiatrists, family members and people who have experienced mental illness, all of whom have received extensive training in their role as facilitators. Users of the forum can access a large database of information about these illnesses, FAQs and links to other resources.tipsychotic medication was rarely used.

The Soteria project demonstrated that long-term outcome for residents of the therapeutic household was similar to that of patients admitted to standard hospital-based treatment where antipsychotic medication was routinely used. The Soteria approach has since been replicated in California, Alaska, and several countries in Europe.

Coming away from the Soteria conference, I was infused with a passion to understand the true course and outcome from schizophrenia. For months, I ferretted around in the dusty basements of medical libraries unearthing twentieth-century research studies from all over the world. Outcome from schizophrenia has been a popular topic for psychiatrists to study, in the US, Britain, Scandinavia and beyond, since the late 1800s when it was first defined as an illness by Kraepelin. I brought this analysis of over a hundred studies in schizophrenia up-to-date in 2004, incorporating results from the entire century. It demonstrated that optimism about outcome from schizophrenia is justified. Throughout the century around 20% regularly achieved “social recovery” (economic and residential independence and minimal social disruption) and another 20% achieved “complete recovery” (loss of psychotic symptoms and return to the pre-illness level of functioning). This was true for the whole century, except the Great Depression, when recovery rates were halved. Long-term outcome did not improve at all – in fact it got worse – after the introduction of antipsychotic medication in the mid-1950s.

These results aren’t just ancient history. Support for this level of recovery comes from a number of recent studies. A 2007 Chicago-based 15-year follow-up of people with schizophrenia found 19% to be in complete recovery. A 2008 study from Hamburg, Germany, found that 17% of nearly 400 patients with schizophrenia achieved complete recovery after a 3-year follow-up period, and an 8-year study of people with schizophrenia in Dublin, published in 2009, found 39% to be socially recovered. All these results are closely in line with the results of the twentieth-century studies.

It emerges that one of the most robust findings about schizophrenia is that a substantial proportion of those who present with the illness in high-income countries will recover completely or with good functional capacity. Surprisingly, outcome is even better in low- and middle-income countries. Kraepelin’s view that a deteriorating course is a hallmark of the illness proves not to be true; heterogeneity of outcome, both in terms of symptoms and functioning, is the signature feature.

Knowing what I know now, when I see a patient with a first episode of psychosis I don’t start antipsychotic medications right away, especially if the onset is very acute. I wait a few days to see what transpires. If I eventually decide that the person does suffer from schizophrenia, the first thing I tell the family is: This is an illness that generally gets milder as time passes.

Let’s put Emil Kraepelin behind us. We know what we need to know to be able to stop telling patients and families that the outlook from schizophrenia is dismal.

Dick Warner

 

Words matter: How should we talk about mental illness?

“So, I am thinking about how to talk about my….well….my, you know, my mental illness. I mean, my brain disorder. Well, I don’t know how to describe what it is.”

Words do matter and how we talk about what we experience is important. It may be that through the years a person’s symptoms have led to a diagnosis, one that is listed in the DSM-IV. When that becomes clearer, or clear enough, there are ways for these symptoms to be treated, usually by a combination of medications and programs. The major “s” listed by the National Alliance on Mental Illness are schizoaffective disorder, autism spectrum disorders, obsessive-compulsive disorder, panic and anxiety disorders, and borderline personality disorder.

One of the lively conversations today is around how to talk about these illnesses. “Mental Illness is an illness like any other” is a phrase we have heard. However, that does underestimate the way that most illnesses can be determined. Diabetes or cancer or heart disease are measurable, based on biological data. “Mental” illnesses are not yet in that category. We go on symptoms, as mentioned above, and we don’t have a brain scan at this time to indicate why these symptoms occur. While treatable, the causes of mental illnesses are not completely known.

Still, there are many who say that mental illnesses are physical disabilities. They are biologically based and arise in some way from the brain. Therefore, we use the medical model of treatment. “Here are the medications to try in order to alleviate the ‘illness.’” This understanding has at least one enormous benefit. It may reduce the stigma that is present around “mental illness.” What has been known as “mental” illnesses can now be called “brain disorders.” It sounds less stigmatizing, removes the burdens of blame for what causes these symptoms, and can empower those who are living with the shadow of self-recrimination to speak and act more openly in society. Living into that reality, however, still leaves more work to be done. Some people think the word “disorder” is too clinical and medical.

For instance, when I mentioned that I had been using the words “brain disorder” to describe my son’s mental illness, bipolar disorder, it was very clear to him that this is was not the way that he wanted me to talk about this part of his condition. He said just use “bipolar.” I sincerely apologized because I had not asked him before, and I felt that I had used words that were inappropriate. He is an adult who is fully alive, filled with honed wisdom, has a creative wit, and I deeply love him. He was direct in pointing out that I had erred in his case.

Language can be tricky. It can elucidate things or muddy things. So what can we do? Keep on keeping on working on language seeking to describe how things are. It will not be perfect since someone will always come up with an “on the other hand” perspective on what you are seeking to make general and universal. Now I have come to understand even better from my son that perhaps the best thing is to talk with the person who is affected by a “mental illness” or a “brain disorder” or “depression” or “bipolar” or whatever to see how they see it themselves. This is all about relationships anyway. Connecting with someone who is affected by mental illness/brain disorder/etc. may reveal something new and fresh in our own understanding and therefore lessen our perplexity and confusion about our use of language.

Alan Johnson,

Interfaith Network on Mental Illness and Caring Clergy Project

To post a response to this blog please visit The Recovery Trust.

The Recovery Trust, a Colorado-based nonprofit, has added a new resource for families in need of education and support. It is a free, secure, online forum through which family members can join with others in the same situation.

The forum is moderated by a team of mental health professionals, psychiatrists, family members and people who have experienced mental illness, all of whom have received extensive training in their role as facilitators. Users of the forum can access a large database of information about these illnesses, FAQs and links to other resources.

The Stigma Inside Us

We grow up surrounded by a cultural myth – the stereotype of the person with mental illness. Our news media and daytime TV shows portray people with mental illness as violent criminals or, at best, figures of fun. Not so long ago, I saw a realtor’s ad in a local newspaper headed “Driven Crazy by Your Housing?” that illustrated the message with a snarling face with bulging eyes, wild hair and distorted features. Community surveys reveal that people think of people with mental illness as always being unable to make any rational decisions, incapable, unpredictable and worthless.  A 1960s American survey concludes that they are viewed by the public with “fear, distrust and dislike.” In short, “all things bad.”  Since then, there hasn’t been much, if any, improvement.

This stereotype leads on to all kinds of misconceptions about mental illness. Half the people answering a public survey in Britain in the 1990s thought that setting fire to public buildings was a “very likely” consequence of mental illness. American surveys of the same period found that the majority of the public blamed mental illness on “lack of discipline,” and believed that people with mental illness were more responsible for their condition than were people with AIDS or the obese or any other stigmatized group. Worse still, people with mental illness themselves, and their family members share these misconceptions. When I was involved in a global anti-stigma project a few years ago, we conducted a survey of family members in Madrid. It showed that more than half felt that people with schizophrenia should not be allowed to study, drive a car or have children.

So, growing up in a world where everyone accepts this myth and shares these misconceptions, what would your reaction be if someone were to tell you that you suffer from mental illness? If you have an ounce of dignity, it would be, “No, not me. I’m nothing like that.” And, of course, you would be right. No-one is like that. But it may take you a lot of time and effort to get past the stereotype, see the illness for what it is, an illness, and see yourself again for the responsible and capable person you are. Your first impulse would be to say it can’t be true.

I was lucky enough to hear Pete Earley talk in Boulder recently.  He is the author of Crazy, an account of what he learned about the US mental health treatment system after his son, Mike, developed a serious mental illness. In a recent blog, he writes about trying to understand why his son didn’t want to take medication for his mental illness. One day, he asked Mike to explain to him, in writing, why this was such a struggle. Mike writes:

Denial was a strong factor in my understanding and even when evidence of my own madness would be presented, my mind would find a way to weave out of the circumstance and an obtuse reasoning would somehow form that would keep my own pride intact. Always two steps ahead of the truth, my brain would tap dance its way into a room where I was not at fault, where it was everybody else versus me, where I was some sort of prophet or special medium who was undergoing visions, not hallucinations, and I was important, not a victim.

It is very hard to understand that one’s own credibility is broken. There is a lot of personal shame one undergoes when they realize that they are no longer in line with society’s understanding of sane. It makes one doubt one’s own instincts and second guess the movements and decisions that one makes. Suddenly, the veil of confidence and ability has been lifted and one is a wreck, struggling to piece together the remnants of what are left of one’s self image.

I learn a lot from my son, Pete Earley concludes. One lesson he has taught me is that taking anti-psychotic medication is much more complicated than being told by your doctor that you have high cholesterol.

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

You can read his entire blog here: Why Won’t You Take Your Mediation 

Denial is a major consequence of the stigma of mental illness that we all carry within us, but when denial gives way to acceptance and shame, there’s a lot more trouble in store.

People who accept the label of mental illness take on a burden. They can see themselves as incapable and worthless. Out of a sense of shame they may withdraw socially from their friends, give up on their careers, academic or marriage plans and, viewing themselves as hopeless cases, become dependent on their treatment providers and others in their lives.

Consequently, the person with “insight” into his illness may do less well than expected while those who reject the label of mental illness are more likely to hold on to their ambitions and try to forge ahead with their lives.

We conducted a study a few years ago in Boulder, Colorado, that showed this to be true – that people who accept the label of mental illness and hold stigmatizing beliefs about it tend to feel  dis-empowered and worthless and don’t do as well as they might.

There are several other studies now that point to the same problem. Insight coupled with a sense of shame about the diagnosis leads to hopelessness, avoiding social contacts and poor self-esteem. Internalized stigma, it seems, undermines the possibility that insight will lead to recovery.

Mental health professionals have long been trained to help their clients develop insight and to accept their illnesses. It seems, however, that there are two other elements that are vital to recovery that are much less likely to be emphasized in training – empowerment and reducing internalized stigma.

On the road to recovery, people with mental illness need to find the information that will help them shake off the stigma, stereotypes and misconceptions that come with the label of mental illness and to access advocacy to combat discrimination. They need to be treated with the respect that will allow them to retain a sense of dignity and to be provided with opportunities for advancement that will show them that they are masters of their own destiny.

Mental Illness: The Last Stigma

When I entered medical school over 40 years ago we were taught never to say the word “cancer” in front of a patient. The stigma was so great that patients were often allowed to die not knowing what their diagnosis was. The obituary never named the illness.

The same was true of “schizophrenia.” You just didn’t mention it.

Since those days we have shaken off the stigma that cancer carried. People talk about their illness and its treatment openly and get support and information from all sides. We learn about the illness daily from the media.

The same thing has not happened with schizophrenia and other psychotic illness. The stigma of serious mental illness still permeates the fabric of our society.

Most of us know someone close to us, a relative or a friend, who has experienced a psychotic disorder, though, of course, we may not have been told about the problem at the time it was occurring out of a sense of shame or not wanting to hurt the feelings of the person with the illness. But few of us know much about the nature of these illnesses – the causes, the symptoms of the various disorders, the possible outcomes and how to respond to the person with the illness.

It’s not that people don’t want to know. For some years, when I worked at the public mental health center in Boulder we would regularly teach about mental illness in the community. We would talk to the police and judges, who often meet people with mental illness during their working day, and get to answer their many detailed questions.  We would go into high schools with some of our clients who had experienced psychotic illness and have them tell their stories. The students would be on the edge of their seats, filled with obvious interest and empathy.

In the debate on gun control, there is an emerging consensus on one point. The senate and the president agree that we should educate teachers about mental illness. Good idea! But why just teachers? What about their students – the next generation of adult citizens? Many of them are living with someone with a mental illness. Some will develop a mental illness. More will become parents of someone with a mental illness.

We don’t teach about these conditions in school on a regular basis. It is not reliably part of the psychology curriculum. The health curriculum in my local school district is a wonderful program for teaching citizenship skills and how to lead a full and productive life, but it contains nothing about serious mental illness.

The result of this lack of education is that our citizens grow up not being able to recognize the onset of disabling mental disorders in their own children, not knowing what treatments are possible and what benefits they can bring. Often families find out what they needed to know years after the problems develop, and even then, they may not be able to access the information that could help them. The National Alliance on Mental Illness (NAMI) and its many chapters across the US has proven to be a wonderful resource for families in this situation. Their Family to Family program, through which trained family members teach courses for other families on what they need to know about recognizing and managing these illnesses, has been shown to be effective in improving outcome for people with schizophrenia and similar disorders and has become a model for the world.

The Recovery Trust, a Colorado-based nonprofit, has added a new resource for these families in need of education and support. It is a free, secure, online forum through which family members can join with others in the same situation.

The forum is moderated by a team of mental health professionals, psychiatrists, family members and people who have experienced mental illness, all of whom have received extensive training in their role as facilitators. Users of the forum can access a large database of information about these illnesses, FAQs and links to other resources.

The forum provides a vital new opportunity for support and education for families and friends of people with mental illness who live in outlying areas of the state where there may be few other resources. We expect that it will be helpful for people who can’t get to support groups because of distance, work or other factors.

To enroll as a user of the forum visit here.You can preserve your anonymity.

The forum is a resource for a people who urgently need information about mental illness. But we must move beyond this and look at how we can educate our young citizens so that this important knowledge is disseminated throughout our society like other vital health information. Including some information in high school health curricula would be an excellent place to start.