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Stigma Centre for Addiction
and Mental Health

6.5 Combating Stigma

A Family Guide to Concurrent Disorders - Part II: The impact on families

Outline - Chapter 6: Stigma

When some families discover that a big part of stigma and rejection is social, not personal, it stimulates them to try and make changes.

For years now, I've fought for the rights of those with concurrent mental illness and substance abuse problems, to really legitimize the whole thing. We have to start coming out of the closet. I think we'll have a much stronger position when everybody can finally relate to the reality of concurrent disorders.

Family members may become involved in social and political action to change conditions and attitudes, to decrease discrimination and increase control over resources. Family support groups are at the heart of this action. Such groups give people a sense of collective power to solve their common problems and improve their lives.

Advocating for change

Stigma has powerful effects that people can't easily overcome on their own. Stigma can prevent legislators from setting aside enough money for mental health care and financial support for caregivers; it can keep insurance companies from providing enough coverage.

For many family members, educating the public about the myths, stereotypes and realities of concurrent disorders helps reduce stigma. Families have worked hard to decrease irrational fears while attempting to humanize and promote acceptance of both the people with these disorders and their families. Family members have recognized that health care workers, educators and the media need to be educated as well.

Things will improve, and we're doing our bit out there with education about mental illness and substance abuse. Things really couldn't be much worse than they were 20 years ago. There's a lot of education and good research coming out now. I still feel that education is the best way to combat stigma, but I think it can take a couple of generations to get rid of things like that— so we're only halfway there, if that.’

Family groups are one of the best catalysts for change across the mental health and addiction services system. Members of family self-help support groups can:

  • argue for better treatment, planning and accountability
  • sponsor conferences
  • speak at professional meetings
  • lobby legislators and appointed officials.

The family movement, particularly in the United States, has significantly influenced research and treatment for people with concurrent disorders. Family members have developed effective relationships with researchers, mental health professionals, legislators and administrators, without compromising their own independence as advocates.

Stigma is nothing like it used to be, say, 18 years ago. It's really gone down, and the reason, I think, is that people are better informed. I like to think that the strongest advocates for concurrent disorders are primarily family members. We were the ones that started talking about it, not hushing up the “S” [schizophrenia] word . . . and I think that has demystified mental illness and substance abuse a lot. It helped with my friends. Quite early on, the friends that I had were not terribly sympathetic. I set about educating them, frankly.

Advocacy activities can pose a moral dilemma for some families. They need to be sensitive to their relative's desire for privacy or disillusionment with the mental health system. Some may wish to forget or deny their condition and expect their families and others to co-operate. Many families encourage caution in moving forward with lobbying or other public advocacy activities.

Advocacy Tips

  1. Be well informed.
    As a family member or friend of a person living with substance use and mental health problems, you already know the effects of this illness. Your experience and knowledge is one of the greatest tools you can bring to your advocacy efforts.
  2. Identify your issues.
    You may have many areas of concern (i.e., access to comprehensive mental health and substance use screening and assessment, access to integrated treatment), but it is best to keep your communication targeted. Focus on one or two issues at a time.
  3. Communicate effectively with government officials.
    Connect with officials, either in person or by phone, to expand relationships and present your key messages. You can call your local member of Parliament (MP) and review your key issues. If you are able to speak directly with your MP, be specific, persuasive and factual. Keep your conversation short. Ensure you thank the official for his or her time. Finally, follow up with a brief letter reinforcing your key messages. If you cannot speak directly with your MP, leave a message with his or her assistant. Be sure you know what you want to say, say it politely and don't forget to leave your name, address and phone number.

    Send a letter to a federal government ministry such as Health Canada or Justice Canada. Letters, either through Canada Post or e-mail, are powerful ways to get key messages to MPs. When writing a letter, remember to use the correct address, use your own words and personal experiences, identify the issues and key messages and don't forget to say thank you. Letters are a great way for politicians to get to know the real faces of people affected by mental health and substance use problems. You are critical to making this happen.

    Here are some suggestions for preparing to communicate with government officials:
    • If you want to contact provincial or territorial government officials, click here for more information on contacting your member of provincial or territorial parliament.
    • Find your federal MP by entering your postal code by clicking here.
    • You can find out about the federal ministries and the ministers responsible for each ministry by clicking here.
    • For more information on how to communicate with your MP, by clicking here.
  4. Communicate effectively with the media.
    Your local newspaper, television or radio station may be willing to write an article about your experiences and key issues. Be clear and concise when speaking to the media. Be prepared when you speak to a journalist and remember to stick to your key messages. You may also want to contact local, provincial, territorial or national organizations for more information before speaking with the media.

*Tip list adapted with permission from Advocacy Tips (Schizophrenia Society of Canada)

The impact of anti-stigma campaigns

Some studies have shown that educational campaigns result in a moderate increase in general knowledge about mental illness and substance abuse, but they actually have little impact on negative attitudes. For example, educating people about the biochemical nature of concurrent disorders hasn't improved attitudes toward people with mental health and substance use problems (Read & Harre, 2001).

However, attitudes did improve when people had personal contact with people who have concurrent disorders. This suggests that educational and anti-stigma campaigns should have a personal element, perhaps with client and family testimonials about their struggles and triumphs.

I think the strongest advocates against stigma are family members and the people with the illness themselves. We are now getting people that are willing to stand up and say, yes, I have schizophrenia and, yes, I have used drugs and alcohol. I know three or four people that will actually come with me to high schools and get up and talk about their illness in front of high school students. And I took one young man with me to speak to the first-year medical students last month. That's the kind of thing that people will listen to—the real stories coming from the people themselves.

Take a look at the following list of well-known public figures who have personally dealt with a mental health problem, a substance use problem or both.

Were you aware that these famous individuals (and this list provides only a few examples!) have struggled or continue to struggle with such problems?

Do any of these names come as a surprise to you? If so, why do you think you are so surprised?

  • Paula Abdul (singer/dancer) had an eating disorder (bulimia nervosa).
  • Patty Duke Astin (actress) wrote about her bipolar disorder in a book entitled A Brilliant Madness: Living with Manic-Depressive Illness.
  • Drew Barrymore (actress) has tackled clinical depression and substance use problems from a very young age.
  • Ludwig van Beethoven (German composer) had bipolar disorder.
  • Jim Carrey (comedian/actor) has experienced clinical depression.
  • Winston Churchill (former British prime minister) had bipolar disorder.
  • Francis Ford Coppola (director, The Godfather and Apocalypse Now) had bipolar disorder.
  • Patricia Cornwell (mystery/thriller writer) had bipolar disorder and eating disorders (anorexia and bulimia nervosa).
  • Charles Darwin (naturalist, author of “The Origin of Species” theory of evolution) had severe panic disorder.
  • Carrie Fisher (actress—Princess Leia in Star Wars) had bipolar disorder and substance use problems.
  • F. Scott Fitzgerald (writer, The Great Gatsby) experienced clinical depression.
  • Judy Garland (actress, singer, “Dorothy” in the Wizard of Oz) had clinical depression and substance use problems.
  • Linda Hamilton (actress, Terminator, Terminator II) has bipolar disorder.
  • Sir Anthony Hopkins (British actor, Nixon and The Silence of the Lambs) had clinical depression.
  • Margot Kidder (actress, “Lois Lane” in Superman) had bipolar disorder.
  • Marilyn Monroe (actress) had clinical depression and substance use problems.
  • Alanis Morissette (singer, musician) has experienced clinical depression.
  • Dolly Parton (country singer, actress) had clinical depression.
  • George S. Patton (US general, WWII military leader) experienced clinical depression.
  • Cole Porter (American lyricist, composer of Broadway scores [“Anything Goes,” “Can-Can,” “Night and Day”]) experienced clinical depression, alcoholism, paranoid delusions and obsessive-compulsive disorder.
  • James Taylor (musician, singer) had bipolar disorder.
  • Leo Tolstoy (writer, War and Peace) experienced clinical depression and alcoholism.
  • Barbra Streisand (singer, actress) has social phobia.
  • Margaret Trudeau Kemper (wife of former Canadian prime minister, Pierre Trudeau) has bipolar disorder.
  • Robin Williams (actor) has bipolar disorder.

Burnout

When years of advocacy fail to produce desired results, family members may feel disempowered and burned out.

You know, there's a “Cure for Cancer” run—everybody goes to bat for people stricken with cancer. And . . . there are people who go door to door raising money for cancer research and cancer support . . . but compare this to schizophrenia—people will watch the “Walk for Schizophrenia,” but they're not exactly supportive. They're not rooting or cheering them on or anything. But then again, with mental illness and substance abuse, it's going to be so much harder. Relatively few people with concurrent disorders or their families have come out in the open, if you consider the percentage of people with these illnesses. We just don't see enough role models and heroes. What we do see are the dedicated family members who have really made a push forward in this area.

Issues such as lack of housing for relatives with concurrent disorders, lack of acknowledgment of the burden on the family and failure to provide services and respite care for families are consistently raised and ignored. In spite of these barriers, however, family members continue to strive for equality, fairness and justice. Families may need to take a break from advocacy work from time to time to give themselves a chance for rest and renewal.

Despite their negative experiences, family members have found ways to survive and cope with stigma. Many have reflected on their own growth and development as they faced stigmatization and have come to see their experience as a process in which they learned to rise above the effects of prejudice and discrimination.

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