Patient Groups Tackle Stigma Attached To Bipolar Disorder And Other Mental Illnesses With New Tools
Mental illness is one of the last surviving stigmas in today's liberal society. Class, race, religion, gender and sexual orientation, are all off-limits now as reasons for discrimination, social exclusion, jokes or disparaging remarks of any kind. Where these are concerned, we've come a long way in terms of tolerance, fairness and sensitivity to the feelings of others; as a rule, words are chosen carefully so as not to offend and legislation ensures fair treatment. Mental illness, however, despite affecting one in four of us at some point in our lives, still provokes prejudice, especially in the workplace. Job applications frequently ask potential employees to declare treatment for a mental illness. Those who answer truthfully are invariably unsuccessful and those in work who report mental illness can find themselves passed over for promotion. As a result many people with mental illness experience rejection, unemployment and a sense of social isolation through no fault of their own. Fewer than 20 per cent manage to hold down a job, according to patient advocacy groups.
"Living with mental illness is tough enough without having added to the burden of illness, the pain and rejection of stigma," points out John Bowis, a member of the European parliament. But it's not just employers who are to blame. "We all contribute to the stigmatisation of people, who if they had a physical problem, would receive our sympathy and support," he suggests.
Stigma attached to mental illness appears to remain a worldwide problem, affecting people of all cultures. In a recent survey among people with bipolar disorder, conducted globally by the pharmaceutical company AstraZeneca, 88 per cent said they felt stigmatised and socially isolated on account of their condition. Bipolar disorder, characterised by severe and recurring mood changes along a spectrum ranging from overactive, excited behaviour (mania) at one end to deep depression at the other, usually requires pharmacological treatment and psychosocial training in behavioural strategies to maintain mental equilibrium. Therapies are available that could potentially help many people who are currently keeping their illness to themselves, struggling on without medication. Treatment would give them a better chance to lead fulfilling lives at work and home. Unfortunately, perceived stigma is a major factor stopping them coming forward for diagnosis and treatment. The issue is a serious one because there is a high risk of suicide among inadequately managed people with bipolar disorder.
A Lexicon to help the media avoid negative stereotyping
How public perceptions of mental illness are formed and give rise to stigma is debateable. The role of the media may be merely to reflect rather than shape public perceptions; but many people believe misrepresentations of mentally ill people are constantly reinforced unnecessarily by all kinds of media from newspaper and broadcast news-reporting, to literary fiction, TV drama and film. In Spain, the US and the UK, over half of people with bipolar disorder, and their carers, said they believe the media is a major propagator of discrimination against people with mental illnesses.
Ignorance is the root cause of stigma. Overcoming it requires education and greater awareness at public level of what mental illness involves and how recovery is possible with treatment, say organisations such as the World Federation for Mental Health (WFMH). As they see it, the media could be potential allies in changing public attitudes.
The WFMH and six other patient advocacy groups recently collaborated on a publishing initiative for journalists titled "The Lexicon: International Media guide for Mental Health" with the help of an educational grant from AstraZeneca. "The Lexicon" has been designed in consultation with people with first-hand experience of mental illness as well as senior journalists, to help journalists promote responsible and accurate coverage of mental health issues and to give a balanced perspective. Journalists can consult "The Lexicon" when writing news stories involving a mentally disturbed person to select appropriate terminology and to write with sensitivity instead of opting for pejorative labels. It includes expert contact details, facts and statistics about mental illness, the correct definition of much misused terms like "schizophrenic" and "split personality", and gives examples of good and bad reporting.
Discussing "The Lexicon" at a recent AstraZeneca media event, WFMH immediate past president Dr Patt Franciosi said: "It shows journalists how to replace words that hurt with words that could help". Instead of terms no better than playground insults such as "nutter", "psycho", "schizo" and "sicko", The Lexicon suggests instead using the person's correct diagnosis or a term such as "disturbed" which does not carry condemnation. Before publishing a story involving a mentally ill person, Dr Franciosi suggests journalists should ask themselves if mentioning a diagnostic label is relevant. She advises. "Read it through and ask yourself - is this offensive? If it involved a relative of yours, would you want someone to say that about them?" The Lexicon is available from the website www.forum4mentalhealth.com/lexicon.
"Learning about Bipolar Disorder"
Another publishing initiative from the WFMH, also supported by an educational grant from AstraZeneca, is an educational 'tool-kit' titled "Learning about bipolar disorder". This is aimed principally at people seeking help for mood disorders but includes a special section for healthcare professionals.
"Until the nature of bipolar disorder is better understood, and until stigma is reduced, many people with mood disorders will avoid or delay seeking help and remain in denial," believes Dr Franciosi. "In the process, marriages are wrecked and jobs lost." Around 27 million people worldwide are affected by bipolar disorder. It is the sixth leading cause of disability, yet much of it goes undiagnosed for years, she points out. The tool-kit is designed to empower people with bipolar disorder and their families by giving them the information they need to recognise, accept and manage symptoms more effectively. Of equal importance is the inclusion of advice directing them on how to create and maintain a healthy lifestyle, she notes. "Over half of people with bipolar disorder abuse substances such as alcohol. This has to be recognised and help given to overcome it."
The "Learning about Bipolar Disorder" tool-kit also provides information for health care professionals in primary care to whom people with bipolar disorder are likely to turn first for help. Explaining bipolar disorder to new patients presenting with mood disorder symptoms can present a challenge Dr Franciosi acknowledges. "Primary care staff cannot be expected to teach every patient all they need to know in detail." The tool-kit offers them a way to pass on that information in a format that is quick and easy to access and in which medical knowledge is translated into layman's language.
As a patient information guide Dr Franciosi claims the tool-kit is particularly effective for a reason. "We found that what makes this special is the inclusion of personal stories. These are what hit home the most," she explained. "People read the experiences of others and find they resonate with their own." It helps them find the means to understand their own illness history and articulate it, and to see how others have learned to manage their condition. "Cultural differences are reflected in people's stories but these have nothing to with who gets bipolar disorder and who doesn't. The condition affects people of all cultures and people are vulnerable to it throughout the world."