Removing barriers to acceptance and treatment
This article orginally appeared in ADVANCE for Occupational Therapy Practitioners, Vol. 24, Issue 16, Page 32
Sarah took her own life a few days before Christmas. In March, she would have turned 50. Hundreds of people attended her memorial service and celebration of life. From the outside looking in, Sarah appeared to have it all: a healthy and loving 12-year-old son, a thriving art gallery, loyal friends and a new romance.
Unbeknownst to many, however, Sarah had been diagnosed with bipolar disorder. She kept it secret, telling only a few close friends and family members.
Some friends saw her periods of despair, while others only knew the ebullient and energetic Sarah. Although she had been prescribed medication for bipolar disorder, Sarah missed the euphoria during her manic episodes. She stopped taking the medication and descended into the darkness of depression, which eventually drove her to suicide.
Studies demonstrate that the stigma of mental illness prevents tens of millions of Americans from seeking treatment. The government-funded 2005 National Comorbidity Survey Replication found that fewer than half of those who reported mental illnesses during that year sought treatment, and those that did waited at least a decade, by which time they were more likely to have developed additional problems.1 Stephen Hinshaw, PhD, chair of the department of psychology at the University of California-Berkeley, states, “Given the negative perceptions of mental illness, and the shame, it is not surprising that people with mental disorders delay seeking help for decades. Concealment remains a major means of coping.”1
Consequences of Stigma
While nobody would consider ridiculing a person with breast cancer or diabetes, mental health disorders remain vulnerable to mockery. It is not uncommon to hear words such as “schizo” or “psycho,” or jokes about “crazy” people when referring to serious brain disorders such as schizophrenia.
The stigma of mental illness continues because the word “mental” suggests that it is not the same as a medical or physical condition. To many, the term “mental” implies that the illness is not a legitimate medical condition, but rather a problem caused by one’s own volition and actions. People with mental illnesses are often told, “it’s all in your head” and they should just “get over it.” Marya Hornbacher, author of Madness, asserts that one of the biggest misconceptions regarding people with mental illness is the idea that they have a character flaw, not an illness.2 Stigma, by definition, is the shame or dis-grace attached to something regarded as socially unacceptable. The four components of stigma include:
- Labeling: mentally ill, deranged, crazy;
- Stereotyping: unstable, violent, unpredictable;
- Creating a division: a superior “us” group and a devalued “them” group, resulting in a loss of social status; and
- Discriminating against an individual on the basis of their label: housing, employment, insurance.3 The consequences of stigma for mental illness can be more devastating than the disorder itself. Some of the damaging effects of stigma include:
- denying that something is wrong;
- refusal to seek treatment;
- rejection by family, co-workers and friends;
- employment discrimination;
- being a victim of harassment or physical violence;
- inadequate or non-existent health insurance coverage;
- suicide, and resulting loss and trauma for those left behind;
- shunning and isolation;
- negative media images;
- discouragement, disappointment and low expectations for life; and
- cost to society at large: lost employment, reduced productivity, criminal activity, vehicular accidents, domestic violence and growing substance abuse.3,4
Basis in the Brain
In a survey of nearly 10,000 U.S. adults, about 6 percent meet the criteria for a seriously debilitating mental illness, defined as one that substantially interferes with a person’s ability to function in normal roles. This is comparable to rates of heart disease and cancer. Further, approximately half of those surveyed will develop a mental disorder at some time in their lives.5 Mental illnesses are caused by a combination of factors: genetics, individual biology and life experiences. Neuroimaging studies indicate physical changes and abnormalities in the brain associated with mental illnesses. PET scans of schizophrenic brains show that the prefrontal cortex, temporal lobes, thalamus and cerebellum are hypoactive.6 The thalamus, which is located in the center of the brain, receives sensory information from subcortical structures and sends this information to the cortex. The thalamus plays a role in modulating attention and arousal. The cerebellum, previously believed to perform only motor functions, is now known to be active in speech, memory and facial recognition.6Nancy C. Andereasen, MD, PhD, chair of psychiatry at the University of Iowa College of Medicine and one of the pioneers of brain imaging technology for the study of mental illness, explains, “Schizophrenia is a disease of distributed circuits and it is a disease in which distributed circuits are misconnected. They are not functioning together in an organized way. They are getting information, but they are sending it to the wrong place, or they are sending it to the right place but not quickly enough, or they are not using it efficiently in that place once it gets there.”6
Although the stigma surrounding mental illness is still quite prevalent, there is an expanding public awareness and acceptance of mental disorders and their biological basis. Many celebrities, artists, athletes, writers, Nobel Prize winners and politicians are disclosing their experiences with mental illness.
Kay Redfield Jamison, PhD, professor of psychiatry at John Hopkins University, revealed her personal account of bipolar disorder in her book An Unquiet Mind. Kitty Dukakis, wife of former governor of Massachusetts Michael Dukakis, suffered from severe depression and substance abuse for many years. In her book Shock, Dukakis shares her battle with depression and how electroconvulsive therapy was successful in treating her disabling condition.
Academy Award-winning actress Patty Duke has published two books on bipolar disorder, and speaks to audiences across the nation about her bipolar disorder. Duke has made it her life’s mission to speak openly about her battle and victory over bipolar disease. Duke states, “when I began treatment, I was so blessed to receive so much support, and that’s when I decided that it’s wrong to keep this a secret. You have to tell.” Duke was not diagnosed with bipolar disorder until her 30s; however, once she started lithium, her life dramatically changed for the better.7
Discrimination from health insurers is undoubtedly one of the major barriers for those with mental illness in obtaining effective and timely treatment. On March 5, the U.S. House of Representatives passed a mental health parity bill by a vote of 268-148. The bill would require health insurers to provide the same level of coverage for mental illness and substance abuse as for other medical conditions, and would not permit insurers to charge higher co-payments and deductibles or impose other different standards on mental health and addiction costs.8 The White House has opposed this bill, stating that a less-extensive version was passed unanimously by the Senate last September. The bill is now in conference committee for lawmakers to resolve the differences in the two versions before legislation can be offered for final congressional passage and sent to President Bush.
House Speaker Nancy Pelosi, a California Democrat states, “Mental illness—illness of the brain—must be treated just like illness anywhere else in the body. There is no shame in mental illness. The great shame would be if Congress did not take action and ensure that individuals with mental health illness and addictions are given the attention, treatment and resources they need to lead healthy lives.”8
OTs Can Play a Role
Changing the stigma of mental illness begins individually; we cannot successfully advocate for those with mental illness if we do not face our personal prejudices and misconceptions. As health care professionals, it’s imperative we understand that mental illness is a result of a brain disorder as well as concomitant environmental factors such as poverty, abuse and violence. We must equate mental illness with other disorders and diseases such as diabetes, cancer and heart disease.
Language can be powerful in maintaining the status quo or changing our perceptions of those who have mental illness. Once again, labels that create stereotyping continue to be pervasive. We need to be aware that our own thoughts, such as “he’s a whacko” or “she acts like a schizo,” need to be replaced by “he’s agitated now” or “she’s hallucinating and may need a medication adjustment.”
It’s also important for people not to equate themselves with their condition. So instead of saying “he is bipolar,” say “he has bipolar disorder.”9 The media has a powerful influence on our attitudes, either in a negative or positive way. For example, the media often depicts the mentally ill as dangerous and unpredictable. However, the reality is that only a sub-group of people with mental illness are violent. In fact, people with mental illness are more likely to be victims of -violence and crime, rather than perpetrators. When we encounter negative messages from the media (television, movies, comic strips, greeting cards), it is our responsibility to challenge them by writing letters of protest that identify the problem and offer solutions.
Access to mental health services is often absent or inadequate in diagnosing, treating and providing ongoing support to those with psychiatric conditions. On a political level, we can become advocates and activists for change with insurance coverage. By contacting our state representatives on the importance on voting in favor of the mental health parity bill, we can have a direct impact on the political process. Even in the upcoming presidential election, health care reform is a top agenda item.
As occupational therapists, possessing a holistic view of mental illness that integrates its psychosocial, cognitive, spiritual and physical elements enables us to empower our patients in attaining the highest quality of life possible. The roots of occupational therapy are embedded in treating those with psychiatric conditions. We have the tools, skills, knowledge, empathy and respect for those who suffer from mental health challenges. We can help prevent tragedy and loss, like that of Sarah’s suicide, by educating others and working to remove the stigma of mental illness.
- Anwar, Yasmin (2007) Stigma of Mental Illness Explored, UC Berkeley Press Release, pp. 1-2, http://www.berkeley.edu/news/media/releases/2007/01/16_stigma.shtml
- Beckman, Rachel. Excerpt on “Madness”: A Bipolar Life, Daily Camera, April 15, 2008, p.11
- Mayo Clinic (2005) Mental Illness and Stigma: Coping with the Ridicule, pp.1-3, http://www.cnn.com/HEALTH/library/MH/00076.html
- Mission Peak Unitarian Universalist Congregation (2008) Stigma of Mental Disorders-Consequences and Strategies, pp. 1-2, http://www.mpuuc.org/mentalhealth/mhstigma.html
- Barnum, Alex (2005) Disorders Often Start in Young People and Go Untreated for Years–Care Usually Poor, San Francisco Chronicle, pp. 1-4, http://www.sfgate.com/cgi-bin/article.cgi?file=/c/a/2005/06/07/MNGB3D4N3K1.DTL
- Andreasen, Nancy C. (2007) Schizophrenia and Neuroimaging: An Expert Interview with Nancy C. Andreasen, MD, PhD, Medscape Psychiatry & Mental Health, pp. 1-3 http://www.medscape.com/viewarticle/553548
- Duke, Patty 92206) Millions Suffer Without Diagnosis, Online Center for Mental Wellness, pp1-3, http://www.pattyduke.net/blog/index.php
- Rehab Today (2008) US House OKs Bill Backing Mental Health Coverage, pp.1-2, http://www.rehabpub.com/RMN/2008-03-17_03.asp
- Mayo Clinic ((2007) Mental health: Overcoming the Stigma of Mental Illness, pp.1-5, http://www.mayoclinic.com/health/mental-health/MH00076