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.

Lois the Poet

During my ER shift today, in room 10, there was a thin homeless woman. She was covered in a film of grime, but she had a beatific smile. “My feet hurt, doctor,” she told me. “I’ve been walking a lot, looking for sanctuary. The government has been trying to steal my creativity for years, but I’ve been guarding my poems. They want to kill me for my poems, but I won’t let them.”

She was holding a small notebook with a beautiful flowery cover, in shades of pink and magenta. She was writing on the creamy pages in small, neat cursive. As far as I could tell, it was her only possession that was not filthy.

“That’s so cool that you write poetry,” I told her. “That will be your legacy.”

“Yes!” She beamed. “How nice that you understand!”

I examined her. Her feet were sore, and blistered, but nothing more. She looked healthy, and at peace. “Do you want to see our psychiatric team?” I asked her.

“Oh, no, I don’t need them,” she replied. “I’m fine.”

“Would you like a shower?”

“That would be great!”

“Would you like a meal?”

“That would be lovely.”

“Would you like something for pain, for your feet?”

“That would be wonderful.”

“Is there anything else we can do for you?”

“No, that sounds just perfect. That’s all I need.”

“It was nice to meet you. You are a beautiful soul,” I said, and turned to go.

“Doctor, would you like me to read you a poem?”

“I would like that more than anything, but I have patients waiting to see me. Maybe I’ll come back in a bit, after I get caught up, and you could read me one then?”

“Would you like me to write one for you while you go see those other patients?”

“That would be fantastic if you would write a poem for me! Thank you so much.”

“Do you want to pick a topic, or should I just look into your soul?”

“I would love it if you would look into my soul,” I said, and I meant it.

Thirty minutes later, she passed me in the hall as she was walking with a nurse to the discharge area.

“Doctor,” she smiled, “Here is the poem I wrote for you.”

She handed me an unblemished, creamy page, torn from her notebook.

On it was this poem:

For Mercys Foot Doctor

Today a foot doctor approached me

She seemed to have a halo that

said you at this moment are

the exact right company

We talked a little bit about

my legacy

And I said I hope in the

future for the doctor and

the patient it can be a

great game of candy

kiss monopoly called

a glory story of poetry

Of course she admired my

filthy dirt

She said congradulations you

have been promoted to

Grade A Self Worth

She said simply all you

need is a shower

And you will have unlimitless

Candy kiss flower power

By Lois

August

At the bottom of the page it said:

“I will be seeking Sanctuary

Until the right person shows

me my gods mercy.”

“This is a great poem,” I told her. “You have made my day.”

And then I showed the poem to the nurses, and I put it in my pocket, and I told the people I love most about it. I read it to my family at dinner. And then I said to them, “I have the best job in the world.”

Valerie Norton, MD

“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

 

Sibling Support – What’s Out There?

As a child growing up I never thought about the concept of needing “support”. I didn’t think about the fact that I didn’t know anyone who was experiencing a lot of the things that I was experiencing in my home. Maybe I did have friends who were also sibs to special needs kids, but if I did, I didn’t know it, because I was not aware that there was a need and so I didn’t talk about it. I was a kid trying to be a kid, plain and simple. I had no idea of the concepts of peer support, the need for validation, or a safe forum to ask questions that I had about my brother’s disability or what it meant for my family, for me, or our future.

It was when I got older, working in the fields of both mental health and developmental disabilities, that I felt a kinship with the siblings, admittedly more so than with the parents of the special needs’ kiddos, or even the person with the special need him or herself. It started to happen naturally, and frequently, that I felt good when I could tell it helped them when I said something that clicked – I would often get a look which I translated as “Oh wow, you understand?, “You get this??”, or “This is comforting”. And then they’d be on their way, or I would … out the door, and then I worried they’d be back in a void; a place where they could not speak openly or feel as heard. At that point I realized my life had been a bit different than my peers and that it sure would have been nice if someone had understood, and that things should change.

I then reached a point in my career where I felt fairly secure or grounded in how I would approach sibs and was lucky enough to make talking to them about these things a small piece of my work. But I also became obsessed with finding out what else was out there. What kinds of groups? Doesn’t anyone else realize this is a need? And I researched. What I found was both thrilling, and disappointing. There is very little available, which saddens me. It is still a field untouched and undiscovered, really. However, I also found The Sibling Support Project, and Don Meyer; someone who not only knew the need very well, but the man who took the extra leap and created the curriculum for Sibshops. Eventually, I took his workshop and now am a facilitator of these Sibshops in Colorado Springs, Colorado. There are many around the world. Below are a couple of links, with explanations of this issue, the need to address it, what Sibshops are, and how to find them. I highly encourage you to surf around, wherever you are. There may be a Sibshop near you, and if not, you may want to make it known to a local organization that you wish there was, and that you would want to partake in that service if it was available. Maybe you want to take the workshop and then facilitate them yourself! It is highly rewarding, FUN, challenging, and affirming.

http://www.siblingsupport.org/
There are so many places to go within this site. If you are a sibling of a special needs’ person, you could be here endlessly. Pay it a visit.

Some options:

You may click on “Sibshops”, then “Find One Near You”, and enter your country and state and see what pops up.

Or click on “Connect With Other Sibs” and find the various stories to read and maybe connect with, and there are also some very active online forums for sibs to join.

There are books under “Publications” (which can be life-changing; one in particular was, for me), or click on “Workshops” to see if a facilitator training is coming to your area.

www.rockymountainsibshops.com
A shameless plug at my own website, should you happen to be in the Pikes Peak region…. Even if you’re not, I invite you to click on “External Links” for some good Youtube videos and recommended publications which might serve you.

I have seen some change in the past year or two. I give most of that credit to Don and The Sibling Support Project, for raising awareness, and to the work of Sibshops’ facilitators in so many communities. It is a healthy start. There is so much need, and so much more room to grow. Please get involved. Chances are if you are reading this blog, you are involved at some level. I hope the importance of sibling support is ringing true with you and that you will seek it in your community and consider getting involved.

Lisa Croce, RN, BSN

www.rockymountainsibshops.com

 

Confidentiality Barrier

I hear many families complain that, when their relative is admitted to a psychiatric hospital ward, they can’t get basic information about him or her when they call the hospital. They are told that the information is confidential and protected by statute. What a frustrating situation for the family and what an obstacle to good patient care this must be! Common sense and common courtesy, at least, should tell the hospital staff that each patient, upon admission, should be asked if he or she would be willing to sign a release of information form allowing staff to communicate with specific family members. New patients are asked to sign plenty of forms. This could easily be one of them. This is rarely done, however, in US hospitals and clinics. Why is this so? Is it laziness, because talking to families takes time? Or is it a reflection of the often unrecognized stigma that even mental health professionals harbor inside?

We have to recognize an important element in this situation. In the US, hospital administrators and their lawyers are running scared since the introduction, in 1996, of the federal HIPAA Privacy Rule that prevents service providers (with heavy fines) from releasing confidential health-related information. At the same time, the Privacy Rule is balanced so that it permits the disclosure of health information needed for patient care and other important purposes. A simple release of information form signed by the patient, or the existence of an emergency situation that over-rides confidentiality, can satisfy the needs of the family, the service providers, hospital administrators and lawyers alike.

Whatever the underlying motivation, if you run into this situation, you need to know that, even without a signed permission to release information or the existence of an emergency situation, communication is still possible. You can always give information to the staff that they should have if they are to be able to understand their patient and to treat him or her properly. You can tell them, for example, about your relative’s behavior prior to the hospital admission that they may not know about because he or she is too guarded to mention it. You can tell them about your fears, your concerns, or what a wonderful person your relative is when not afflicted by illness.

Here is what the well-known American psychiatrist Robert Liberman has to say about this issue in his 2008 book, “Recovery from Disability”:

“Too many practitioners pay obeisance to a misguided conception of privacy and confidentiality. There is no violation of confidentiality when a clinician solicits information from family members. Can anyone picture an internist or surgeon failing to invite a close family member to provide confirming and converging information regarding the patient as a key element in diagnosis and choice of treatment? Relatives are lucky if they get in to see the professional responsible for the patient’s treatment, much less hear of the patient’s diagnosis and prognosis. Plainly speaking, relatives are ignored by mental health professionals.”

What can you do if you find yourself in this situation?

Number one: Be assertive. It is your right to know what is happening with your loved one. Take a stand!

Two: Ask the staff to ask your relative to sign a release of information allowing them to talk to you. Failing that, ask your relative to ask the staff to give him the same form to sign. If your relative declines to do this on Day One, ask again on Day Six or Seven.

Three: Remember, there is no law that prevents you from giving information to anyone on the hospital staff if you think it would be useful.

Four: Expect to be included in post-hospital discharge planning unless your relative specifically objects to your inclusion.

Let’s bring some sanity back to the mental health treatment system.
Dick Warner

 

Social Therapies

In the USA in the 1960s, the era of the Civil Rights Movement, the rise of Feminism, and President Kennedy’s Community Care policy, psychoanalysis became a country-wide fad. Much of Woody Allen’s humor was based on poking fun at psychoanalysis. More significantly, a personal analysis was an essential requirement for a chairperson of a Department of Psychiatry. Over the next several decades the pendulum swung away from psychoanalysis towards biological explanations for psychiatric disorders, partly as a result of technological advances in brain imaging and genetics, but also due to the campaigning of the large and powerful pharmaceutical companies. Today psychoanalysis is almost extinct in the USA. The emphasis on an exclusively biological basis for schizophrenia generated a mind-set inimical to the notion of recovery.

There was never such a wholesale commitment to psychoanalysis in the UK, where the number of analysts has not exceeded several hundred for a population of 55 million. Furthermore the majority of analysts live in the major cities, and there is only a handful in the north of England. The dominant ideology in mental health has been a social approach, the pioneers of which were active from the 1930s, establishing community services before the advent of psychotropic medication. The founding of the National Health Service in 1948 provided a basis for social therapies such as rehabilitation, with an emphasis on recovery from psychiatric illnesses including schizophrenia. From the 1950s onwards, successive governments of both the Right and the Left supported a policy of deinstitutionalization, which has been effective in reducing the number of psychiatric hospitals in England and Wales (Scotland has its own Department of Health) from 130 to less than a dozen. The discharged long-stay patients are living in much improved conditions with greater freedom, and there has been almost no homelessness, or victimization.

The emphasis on a social approach in the UK has led to important advances in the non-pharmacological treatment of schizophrenia. These include professionals working co-operatively with family careers and patients, with a reduction in relapse for the most vulnerable patients from 50% over 9 months to 10 %. British psychologists have adapted cognitive behavior therapy, developed in the US for depression, for the treatment of schizophrenia, with a reduction in delusions and the distress due to auditory hallucinations. Recently a computer-assisted therapy has been developed for the treatment of auditory hallucinations resistant to medication, which has been effective in reducing the frequency, volume and malevolence of the voices in many patients. A minority even ceased to hear the voices altogether. These social therapies do not abolish the need for antipsychotic medication, but are free of side effects and produce improvements in the symptoms that enable patients to re-establish productive and satisfying lives.
Julian Leff

 

“What We Siblings Have in Common, Besides our Sibs”

We brothers and sisters of people with special needs, whether we are young, old, or somewhere in between, have much in common. Of course we are all individuals and as unique as everyone else on the planet, but there are some general traits and aptitudes that we tend to share. I would sure love to hear back from some of you after reading this blog to learn what you find to be true, how your experiences are different, and what your thoughts are as you read. Are you surprised? Are you validated? Do you get a feeling of “Oh, it’s not just me?”, or are you thinking “Hmmm, I am a sib and this doesn’t describe me at all”. Maybe you see another one of your sibs in some of the phrases. Please feel free to share.

There are three very typical behaviors taken on by children who grow up with a special needs’ sibling. We’ll call them “The Overachiever”, “The Invisible One” and the “Pick Me! Pick Me!”.

The Overachiever: Some sibs (it often happens to be the eldest, though not always) seem to try to overcompensate for the special needs’ siblings by working extra hard in school, being overly helpful in the house, behaving exceptionally well. They see that it is sometimes difficult for their parents to care for their sib, and so they do their part to make things easier. This sounds wonderful, and in many ways is, but hopefully these kids are having fun too, and not growing up too fast. One upshot of being The Overachiever is the good grades which may afford them scholarships and invitations to good colleges and universities.  Another is possibly a lower risk lifestyle and safer adolescence with less chance of experimental drug or alcohol use, or young onset of sexual activity.  The bad news is the self-induced pressure and high standards which might be difficult to maintain, and depressing when they can’t be lived up to. This is still a child we are talking about, after all.

The “Invisible One”: For the same reasons as The Overachiever, The Invisible One just figures if they fly below the radar it will make their parents’ lives easier.  They may, unfortunately, be feeling an absence of attention from their parents since much of their focus is on the special needs’ sib, and so they feel a bit invisible, and then simply behave in a way that lives up to that persona. They’re not getting into lots of trouble, or failing in school, yet they’re not stand-outs either! They simply go along, hardly recognized, and are sometimes referred to as  “easy” children. The good news, again, is possibly lower risk behavior, getting into very little trouble at home and in school. The bad news is maybe these children are not living up to their fullest potentials, or as happy and fulfilled as they could be. Maybe they want more out of life, or from their parents, but do not seek it because this would certainly make them visible.

The “Pick Me! Pick me!”: Oh boy, this can be a fun child. Often described as precocious, incorrigible, one who stands out from the rest of the family, or simply –   trouble, this child wants to be noticed and plain refuses to be ignored! They may at times realize their parents’ attention is being directed to where it needs to be, and simultaneously feel badly or guilty for interrupting that, however, they also feel a compulsion to be noticed; to want to be “picked”. The good news is that they are strong-willed, which is a quality helpful in later life in terms of assertiveness and getting their needs met. It may, in fact, gain them the attention from their parents that they need. It gets them noticed alright! The downside is that they sometimes don’t mind if it entails breaking the law, doing badly in school, acting out at home. They simply WILL be noticed.

Of course all kids, regardless of whether or not they have a sibling who has special needs, may fit into one of those three types, or another type. In addition, so many other factors in a person’s life affect their coping styles, including whether or not they are from a two-parent household, examples set for them, birth order, etc. The point is there are surely some general commonalities, and I point them out because it can be enlightening for a sib to know this, and to determine or gain some insight as to why they behave the way they do or became the way they are. I was a “Pick Me” kid and I did not end up in jail. I did, however, give my parents a run for their money. I think, and sure hope, that now they would be proud of the way I’ve turned out. I mention this to point out that it is not always a negative thing. Kids learn to cope in various ways. It just is what it is.

Special needs’ sibs learn and experience their family life in ways that most kids don’t. Empathy is often a lovely outcome. Most sibs are not only compassionate, but are also quite open-minded and tolerant of people who aren’t “typical” in myriad of ways. They don’t tolerate bullying. A high percentage of sibs grow up to find themselves in the helping professions (nurses, teachers, therapists, physicians, etc). I think sibs are special and make the world a better place. It is my hope that you will communicate with each other, meet each other, find support and understanding in each other, thereby creating a better understanding within yourself, and feel less alone in the world. In my next blog I will discuss the current available supports to encourage this. Please stay tuned and consider reaching out.

Lisa Croce, RN, BSN

www.rockymountainsibshops.com

 

Sticks, stones and stigma

“Sticks and stones may break my bones but words will never hurt me. This poem is wrong. I have never broken a bone in my life, but words have cut, trampled, and drilled through my heart. All the pain inflicted on one person can tear them apart. I should know. I have been in pieces since preschool.”

This was written by my grand daughter when she was eleven and writing about how it is to be living with a brain disorder and ostracized as being weird by her peers. Fortunately, she is doing very well now at fourteen, has lots of friends and is a star goal keeper for her high school soccer team. Still, it was a long haul and I have kept this piece she wrote to help remind me how important it is to work continuously to fight name calling and the stigma of mental illness. As a retired mental health professional, I have found the National Alliance on Mental Illness to be a great way for me to continue being an advocate on our Colorado Public Policy Committee. We need all the help we can get so please consider becoming active in NAMI.

NAMI Colorado is dedicated to building better lives for the 250,000 plus Coloradoans and their families who are affected by any number of mental illnesses – schizophrenia, bipolar disorder, depression, PTSD, obsessive-compulsive disorder, borderline personality disorder, panic disorder and others.
We do this by providing:

— free educational classes about mental illness to the community;
— providing support groups for those with mental illness and their families;
— through political advocacy for all concerned;
— and through our volunteer support and donations.
NAMI’s national website is www.nami.org

NAMI Colorado’s website is www.namicolorado.org

Phoebe Norton

 

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