6.4 Surviving Stigma

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

Family members have found many ways to cope with stigma and discrimination. Strategies change, depending on the situation, their relative's stage of illness or recovery, and their own stage of self-discovery and healing. Strategies to survive stigma are unique to each family and its members:

• turning to other families in similar situations for support
• keeping the problems private — as a family matter
• sharing their stories with the public
• challenging negative attitudes
• looking at the situation from a different perspective.

Building support networks

Many families turn to community-based services such as the Mood Disorders Association of Ontario, the Schizophrenia Society and Al-Anon for emotional support, information and acceptance. Social support can help families deal with problems and cope with stress, and can even prevent or reduce various health problems.

How many people even know that family support is an avenue to help them cope with things like stigma? I mean, people just don't know. But it's very important for family members to get help. Let me put it this way—if I didn't have the help along the way, my husband and I wouldn't be married, because I wouldn't have been able to cope with his mental illness and alcoholism. Where would society be without help available?

Family support groups also provide the opportunity to develop friendships and social networks that can help build self-esteem and feelings of efficacy. When family members are in touch with others with the same problems, feelings and experiences, they are less likely to blame themselves for their relative's problems.

Family support groups can be a very big help to people who can actually talk about it. There's a list of possible topics like medication, noncompliance, housing and stigma—topics that in a typical social gathering, they're a real downer—I mean, to start talking about psychiatric medications, nonprofit housing, what drugs do to people with mental illness, and all the rest of it! So it's a relief just to be in a group of people that you know understand, and you don't have to explain your situation to them. You don't have to hide it. Everybody's pretty much tackling the same thing.

Families also say that providing support and information to others promotes a sense of success and self-esteem.

I've advocated for a buddy system. I think each new family should be linked with a more experienced family, to help them through the maze of all this. Many new families come to the support groups because they feel so alone. It's good for the more experienced family, too. They feel good because they're helping someone. It makes them feel like they can do something, make a difference.

Maintaining privacy

Many family members are uncertain whether or not to tell others about the mental illness and substance abuse. A related issue is the decision about when, how and whom to tell.

When you have severe mental illness and drug problems in the family, every time you meet a new person you have to wonder, “Should I tell them? Should I not tell them? What will happen? What will they think if I do tell them? How will they deal with it?” The onus is on you to worry about it— you have to expend the energy.

If their relative agrees, some families choose to tell their personal story in a public forum. In this environment, family members are often able to be more objective about their experiences. Because the purpose is to educate others, family members say that they have greater control over the emotional aspects and others' reactions.

However, to avoid stigma, some people try to keep the problems a secret or avoid others.

There are some days when I drive to my parents' house, and if one of the neighbours comes out of their house, I just keep driving around the block until I know they're gone, because I just can't deal with it—the looks and the questions, that whole reaction you get—so I stay away from it if I can. And I can't force myself to say “hello” just like a normal person because I'm wondering what happened the day before—what did my sister do this time in front of the neighbours? Depending on the situation and how I feel, I handle it in different ways.

Hiding the problems works only as long as the condition remains invisible or the family member with concurrent disorders is able or willing to help cover things up. If the condition becomes more obvious, it may be necessary to try new strategies. For instance, one woman's husband had major depression and a serious drinking problem, which had led to hospitalizations, many treatments and job loss. After a long period of stability, he experienced a relapse of depression and spent days watching television or lying in bed. His wife told friends that he had worked so hard he needed to slow down. People were sympathetic and didn't question his absences from social events or work.

Some families try to maintain separate public and private identities. Only close, understanding friends or family are trusted with the truth and are allowed to see all aspects of what some family members called their “real” identities.

I would never tell any of my co-workers. Never. Because it would hurt me professionally—that's a fact. It's a spillover stigma. So at work, I have a separate circle of friends—and it's like a haven. It's the one place I can go that hasn't been touched by schizophrenia and depression and drugs and alcohol. If I were to tell [co-workers], then mental illness would take over that world as well. So, it's better to just have that barrier there between the two worlds, and then there's a threshold I can step over—to get over to this normal world. It's a refuge and a place of rest.

Although many family members say that they avoid potential stigma by not disclosing the problems, research has shown that some of these strategies have negative consequences. The question is whether it is actually possible to reduce the effects of stigma by keeping information secret. One study showed that elaborate coping mechanisms involving secrecy did not reduce the negative consequences associated with stigma, prejudice and discrimination. Such strategies also did not prevent psychological distress and demoralization. In fact, the tactics that led to avoidance and withdrawal produced more harm than good (Link, Mirotznik, Cullen, 1991).

Challenging negative attitudes

Strategies such as dismissing, downplaying or challenging negative attitudes and beliefs can help to enhance self-esteem and resilience. For many family members, accepting the idea that they can't control other people's attitudes, beliefs and behaviour is liberating.

You can't let negative people get to you. You just have to put on a suit of armour and face it. Stigma is everywhere—running away won't make it any better, for you or for your family. You have to be tough with things like this.

. . . I don't experience stigma at all. I refuse to. If people have bad attitudes toward my husband's depression, I try to educate them. If they won't hear what I have to say, forget them. I don't waste time on people like that. The section below entitled “Combating Stigma” has more information on challenging negative attitudes.

Changing the perspective

Another coping strategy involves thinking positively about difficult circumstances. It may involve seeing caregiving in terms of hope and personal growth, as a journey that has transformed them in a positive way.

Any really bad experience in life has the potential for learning, and I think that as a human being, that's what you have to try to do. I mean, you can't approach it intentionally like that, but now I can think to myself, “Yes, this really was a learning experience.”

A related strategy is to try to loosen the hold that stigma may have on you.

I think stigma is how a person perceives it and I think if you refuse to let stigma be there, it loses its hold over you. You can't be ashamed. Because there is no shame in this. You start to wonder about yourself—and that's what stigma can do, make you wonder about yourself.

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