Friday, October 11, 2013

The Stigmatization of Mental Illness

Petra Kottsieper Ph.D

This week, October 6-13 is mental health awareness week.  The first full week of October was designated for this purpose by Congress to further the National Alliance on Mental Illness’ (NAMI) efforts to educate the public about mental illnesses. 1

Over the past several decades NAMI’s agenda included raising awareness that mental illnesses are biological brain disorders due to chemical imbalances, in an attempt to get these problems classified alongside medical disorders such as diabetes. This in turn, would hopefully achieve their second goal to reduce the stigmatization of mental health problems.  This largely overlapped with the declaration by H. W. Bush that 1990-1999 was to be the  “Decade of the Brain."  Consequently, mental health disorders became increasingly labeled as disorders of the “brain” with research focused on neurobiological etiologies, and the development of a large cadre of psychiatric medications to treat these disorders.
In 2010, Bernice A. Pescosolido, Ph.D. and her colleagues published a study on Americans’ attitudes on the attributions/causation of mental illnesses and alcohol dependence. They also looked at attitudes towards psychiatric treatment  and what stigma beliefs respondents held.   The surveys conducted compared the years 1996 and 2006.  It was found that in the 2006, following the "decade of the brain," significantly more respondents stated that they believed the causes of mental illnesses to be rooted in neurobiological problems, and that these problems should be treated by a psychiatrist.  This was good news for those who working towards demystifying  and/or developing a reductionist etiology of  mental illnesses.  According to the beliefs of NAMI and many other advocates, these changes in attitudes should have also translated in a reduction in stigma and negative beliefs often held with regard to this population, but this was not found. 

In a survey conducted in 2006, there was a slight increase in respondents stating that they would not want to work or live next to an individual with schizophrenia or alcohol dependence.   It is obvious that these beliefs have real and significant consequences for individuals with mental illnesses.   Following the de-institutionalization movement , most people with mental illnesses reside in the community , and the main goal for mental health policy makers, providers, advocates and individuals with psychiatric disabilities has been to have people reside in the community and utilize acute care hospital on an as needed basis.  However, as the Pescosolido and other studies have shown , living in the community has not necessary translated into being part of the community.

At this point it might be helpful to talk about what mental illnesses really are and what I mean when I talk about serious mental illnesses (SMI).  First of all they are NOT intellectual disabilities (formerly called mental retardation). Intellectual disabilities, communication disorders, Autism Disorders (including the formerly known Asperger’s disorder) , Attention-Deficit/Hyperactivity Disorders, and some other disorders make up what is called the neurodevelopmental disorders.     Second, mental illnesses and substance use disorders are incredibly heterogeneous.  There are people with what are called personality disorders, where symptoms are thought to be more stable and consistent (which does not mean they cannot be very serious and impairing someone’s functioning), and then there are individuals with what are usually thought to be more “acute” or waxing and waning mental health problems such as depression, anxiety, bipoloar disorder, eating disorders, delusional disorders, somatic disorders and so on.  There is a federal definition for SMI, which does not list specific diagnosis, but addressed that the problems must result in significant functional impairments for the person.   Loosely defined, when practitioners and policy makers discuss SMI’s they are talking about schizophrenia spectrum disorders, bipolar disorder, and major depressive disorder.

It is true that people regard most things, such as novel or different experiences that they are not familiar with or that are clearly out of the norm with some hesitation.  These experiences are hard to classify, and that is something we like to do as human beings.  We are not sure how these experiences are going to turn out and hence the unpredictability makes many people uncomfortable. This means that when it comes to people with mental illnesses we base our perceptions of folks with these problems on several factors that all mutually reinforce each other. 

Individual with serious mental illness often struggle with housing, indeed about 1/3 of the homeless population is estimated to have some form of serious mental illness. Employment opportunities for individuals with SMIs are limited, even more so for individuals with residual symptoms that may require adaptations to their work environments such as quiet spaces, more frequent shorter breaks etc.   This means that we often do not have contact with a person with SMI.  They are not working alongside us, are not living next to us and are not going to the same gym.  The media representations of folks SMI are invariably negative and are often related to violent incidents that have been committed by these individuals.  When we do recognize individuals with this otherwise often invisible disability in the street, or in our local corner store, we are often put off or scared because something in the person’s appearance and behavior seems “off."  This activates previously formed attitudes and beliefs; our stereotypes are activated and we keep our distance. 
It is true, that some people do not seek services for their problems and indeed deny that they have mental health problems, even with strong and overwhelming evidence to the contrary.  The problem of “insight," or rather the lack of insight into illness,  is far from being accepted as simply one of the symptoms of a mental illness (and personality disorder).  If mental illnesses would be less stigmatized would more people seeks services?  If services provided choices in the type of care that people wanted and needed would more people seek them?  These are questions that research can and has started to address.

We also need to understand that the vast majority of people with serious mental illnesses do not choose to be homeless.  They also do not choose to have few prospects to achieve a meaningful present and future.  The choices you make are contingent on your past experiences, your dreams and hopes, and opportunities.   We need to give folks more opportunities which would also allow people to having real meaningful goals again.  Meaningful goals often lead to a stronger commitment to these goals and an acceptance of responsibility for one’s life and choices.  Individuals need to be given more hope and need to learn how to become hopeful again.   Positive life experiences need to replace past negative experiences .
We also need to acknowledge that there are already many folks working alongside us with well managed serious mental illnesses, including such serious problems as bipolar illness and schizophrenia.  These folks may not feel comfortable telling us about their diagnosis due to fear of being stigmatized or discriminated against at their jobs, even in spite of theoretically having the protection of the Americans with Disabilities Act. These individuals need to be welcomed into our workplaces, school boards etc., and encouraged to talk about their experiences.  We all need more role models of individuals who have either overcome significant challenges or are doing mostly well despite ongoing challenges,  as we have enough coverage of people who are not.

It seems that the problem of stigma needs to be address on multiple fronts in multiple ways, and many of these efforts are under way.   But we are all responsible in this endeavor.
To me, one such inspiring act occurred when Kjell Magne Bondevik, the former prime minister of Norway (1997-2000 and 2001-2005), told his country in 1998 that he needed to take some time off from work due to an episode of serious depression seemingly related to work burnout and stress.  Interestingly, he received overwhelming support from the Norwegian people and his fitness for his position was only questioned by a few other politicians, who in turn were criticized for their requests.

Of course most people with mental health problems are not prime ministers, but this at least proves the point that mental health problems can affect anyone.   In 2009, he noted “We must create an environment…where it becomes as easy to talk about mental health as it is to talk about a physical illness or condition…It must be as easy to return to your workplace after a mental breakdown as it is to return after a physical illness.  And we must take more seriously all kinds of harassment… in schools and in the workplace.”
We all need to do more to combat stigma.  Talk to your friend or family member when you think something is going on with them.  No seriously, at least ask the person if they are okay, they can always tell you that they do not want to talk about it, or that everything is alright.   Do not discriminate against qualified applicants with mental health conditions.  When you see someone standing at a bus stop with 20 shopping bags, inappropriately dressed with weird make up and muttering to themselves, think about how this person was once someone who went to school and wanted to be a hairdresser, a chef or an accountant.  How this person may have played an instrument, had a pet, and hated to get up early in the mornings for school.  Also think about that if you are mental health professional; professionals hold similar attitudes towards individuals with SMI as in the general population. If you are a teacher, see if you can include information on mental illnesses it into your curriculum. Speak up if you hear other people talk about people with depression as "weak" or "whiny."  

Educate yourself. Learn that the overwhelming majority of individuals with an SMI are neither violent or dangerous, in other words that  “the absolute number of assaults committed by psychiatric outpatients is low." Read one of the many excellent first person books out there.  If you are a person with a psychiatric disability or a family member get involved in some advocacy that works for you and is important for you. 

And you know, when someone paces up and down on the subway platform, clearly not muttering into a Bluetooth headset, and then of course sits right next to you on the subway, it might just be okay.  Because even though the person may keep fiddling in a strange and obsessive  manner with one of his ears, and then turns to you and asks you if you have a jar of Vaseline on you for his ear, that was it really.  He wanted to borrow a jar of Vaseline. Some people need a tissue, he needed something else.  I just politely said “Nope, I don’t, sorry."  And he politely said, “thanks."  


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