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“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

“What About Those Siblings?”

An often overlooked demographic, siblings of people affected by mental illness, are typically the longest living relatives, and potential caregivers or pillars of support for people with serious mental illness, as well as other disabilities. Despite this fact, and due to varying factors, this population is the least likely to receive support, education, assistance, or even a forum to openly discuss their concerns, worries, questions. Change is occurring, but all too slowly.

Many years ago, even parents were not provided adequate support for their children’s diagnoses. That has certainly evolved. There are many parents’ groups now and educational resources in print as well as online. It is immediately recognized these days that when a child is diagnosed with any type of disability, it involves the family, and providers march into action to address concerns with the parents. The siblings, however? Very seldom, even now in 2013, are the siblings’ needs thought of, mentioned, addressed. This is changing. Slowly. Very slowly.

As a person who was a sibling to a brother with a significant disability, I always knew something was missing in terms of support. I worried. I wondered. I worried and wondered silently. My parents did the best they knew how to do, and actually did it quite well. Most of their time was, of course, spent caring for my brother. Rightly so, and I wouldn’t have had it any other way. We sisters knew to not add to their distress by asking too many questions, adding to their tensions by letting them know of our concerns. There were times I was too embarrassed to have friends to my house after school because his behavior was odd. I did not understand. I felt tremendous guilt for feeling that way. I said nothing about any of it. There was absolutely no one who I could talk to. Who would’ve understood? As I look back I realize there were probably friends at school who had siblings with a disability, and maybe I could have spoken with them, but how would I have known who those students were? It sure would have been nice to connect with them – with someone.

One of the reasons that siblings have not been well included in the conversations over the years is simply that parents were/are trying to protect the sibs. They often feel it is their burden and do not want to share that with the sibs. Parents are intrinsically assigned to protect their children, after all. The intention is truly good. Another factor is that they just do not know how much to say, exactly what to say and not say, and are often thrown off by various ages of the kids and who should be told what!

The good news: A huge percentage of siblings of people with special needs grow up to be amazingly empathetic people themselves, are less likely to bully or tolerate bullying, and often mature into contributing via their careers in the helping professions. It is good to remember that there are joys as well as concerns that result from being a sib.

I plan to write blogs pertaining to the following specific topics: current available supports, one on nothing but the joys, one about shared concerns regarding who is to help out after the parents die, typical traits and common concerns of the sibs, one on statistics, one for the parents on best ways to communicate with the sibs, and so forth. With opens ears and arms I welcome your suggestions. SIBLINGS – what do you want to talk about?

In closing this initial sib-focused blog, I just want to say that as a mental health nurse working with people dealing with all sorts of illness and disability for my entire career, the siblings and I have always resonated, and my brother’s biggest gift to me was the compassion, empathy, and connection that was instilled in me to share with you. You are not alone. I hope you find the solace and sense of understanding, even belonging, that is here for you.

Lisa Croce, RN, BSN

www.rockymountainsibshops.com

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

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 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.