Session Eight - What do we tell other people about mental illness?

Materials Needed:
Handout O:"What Should We Tell Family Members and Friends?"

  1. What do we tell our children, friends, and other family members about our loved one's mental illness?

    1. Making decisions about how much and when to tell others about your loved one's mental illness can be challenging. Caregivers may face this struggle in many different situations.

            Discussion Questions:

      • Does anyone wish to share experiences of being uncertain of what to say?
      • What have been awkward or uncomfortable situations for you?
        • How have you handled these situations?
        • How did you feel?

    2. The discomfort experienced by caregivers only compounds this challenge of knowing what to say. As discussed in previous sessions, the following emotions are quite common in family members:

      sadness guilt
      anger frustration

    3. Caregivers may also want to share feelings of pride in their loved one's courage in facing the illness. Family members report gaining compassion for human suffering through their experiences of living with mental illness in the family.

    4. This workshop will begin with discussing issues surrounding dealing with children. Some of you may not have children - or your children may be grown - but hopefully all of these issues will apply in some manner. Please feel free to offer tips on how you've dealt with your children during our discussion.

  2. How can we help the children?

    1. Videotape [Optional]: Show and discuss 27-minute videotape, I Love You Like Crazy: Being a Parent with Mental Illness. (Mental Illness Education Project). The challenges that many parents with a mental illness face in raising children are reviewed in this short video.

    2. Explain available bibliotherapy for teens dealing with parental mental illness or trauma / PTSD. Explore how the parents might use these interactive books with their children or other relatives.

      Sherman, M.D., & Sherman, D.M. (2006). Iím not alone: A teenís guide to living with a parent who has a mental illness. Edina, MN: Beaverís Pond Press. Available at www.seedsofhopebooks.com
      Sherman, M.D., & Sherman, D.M. (2005). Finding my way: A teenís guide to living with a parent who has experienced trauma. Edina, MN: Beaverís Pond Press. Available at www.seedsofhopebooks.com

    3. Recognize that several time periods can be especially difficult for children (Woolis, 1992):
      1. At the onset of the mental illness.
        1. What are these confusing behaviors or symptoms?
          • "Why does Daddy sleep all day long and stay up all night?"

        2. What's going on in my family?
          • "Why doesn't Mom come to my basketball games anymore?"

        3. Will it go away? If so, when?
          • "When will Dad be like he used to be and read to me at bedtime?"

      2. During adolescence.
        1. Appearances and "fitting in" are very important during this developmental period.
        2. Youth may be afraid and embarrassed about peers' opinions and judgments about them and their family.

      3. During times when the patient is acutely ill and/or acts in bizarre, unusual or socially unacceptable ways.
        • Children often experience these times as especially frightening and embarrassing.

    4. Talk to your children about the illness and how it affects everyone in the family. (Sturges, 1977)
      1. Children need answers to "What is it? Will I get it? Will my parent get better?"

      2. Parents need to acknowledge that we don't have all the answers about the patient's illness. However, the child can learn ways to be helpful and cope effectively.

      3. Children are especially confused when parents deny the existence of the mental illness or don't talk about it. Even if the parent is trying to protect the children, youth may feel quite resentful, even years later.

    5. Be honest with your children. Children should not be promised that the parent will get well and stay well forever.

    6. Tell your children that that they are not to blame - they didn't do anything wrong! In children's naive and simplistic view of the world, they sometimes think they did something wrong and may have caused their parent to be sick.

    7. Learn about the illness, especially about the possibility for it to be transmitted to them or to their children.

    8. Try to instill a sense of being loved by the ill parent (even when the patient behaves in rejecting ways that can be quite confusing and hurtful to the child).

    9. Foster a strong relationship between the child and healthy adults and/or adolescents in the family (Castleberry, 1988).

    10. Foster supportive relationships between the children and people outside the immediate family. Activities outside the family and a good support system of friends can serve as buffers for children.

    11. Educate your child (at a developmentally appropriate level) about the stigma and inaccurate perceptions that many people hold about mental illness. Never use derogatory terms (e.g., "crazy") to describe individuals with mental illness, and correct your children if they do so (Carter & Golant, 1999).

  3. Ways in which children may respond to mental illness in the family

    1. Children may distance themselves emotionally and act as if they do not care about the parent. This style does not mean that the children are not affected; rather, detaching may be their means of coping with the stressful situation (Woolis, 1992).
      1. Children often fear becoming ill themselves. They wonder if they can "catch" the illness.
      2. Older children may worry about their own children inheriting the illness.

    2. Having a parent who is mentally ill can be experienced as a loss for children (Sargent, 1985).
      1. Children may sense they have a parent "who is there (physically) but not there (emotionally)."
      2. Sometimes children feel abandoned and alienated from the family.
      3. This situation can lead to separation anxiety. Because the parent is withdrawn and inaccessible, the young person may cling even more tightly to the parent and struggle with developmental issues of autonomy and independence.
      4. When much of the family's attention is focused on the parent rather than the child, the young person may be more likely to engage in disruptive behaviors (as negative attention can be perceived as better than no attention at all).

    3. Children may adopt a variety of different roles in response to parental mental illness (Sturges, 1978):
        caretaker escapee
        baby recluse
        mourner good child
        patient bad child

      • Although these roles can be adaptive, being stuck in these roles can interfere with normal development and individuation from the family unit.
      • It is important to "allow children to be children," rather than having inordinate responsibilities (e.g., excessive caretaking of other children, doing all of the household chores, managing the patient's unruly behavior).

  4. Dealing with other family members and friends
    1. Awkward, challenging moments can arise in interactions with other family members and friends. Especially when caught off guard, you may struggle with knowing what to say.

    2. Some families exert a great deal of energy trying to hide the existence of the mental illness from other people (Adamec, 1996). Caregivers may lie about the patient's activities or whereabouts (e.g., "Uncle Jimmy is living in Europe for the summer"), may discourage others from coming to the family home, and can keep the patient quite distant from his/her social network. Family members may spend a lot of energy in maintaining the secrecy and lies, and the social isolation can be quite damaging for all family members.

    3. In order to be most helpful, you may choose to discuss in advance with your family member how the two of you would like to respond to inquiries, etc. Communication and planning can reduce the potential for hurt feelings later.

    4. Different situations call for diverse responses from caregivers. The context and individuals involved may influence your response. For example, if your loved one acts bizarrely in public (e.g., starts talking about the special messages he's receiving from the television program), you have several choices:
      1. If the listeners are not important to you (e.g., waitress, gas station attendant) or if the timing is bad, you can ignore the bizarre behavior or not say anything at all. You can also simply say that your relative is having a hard time and you don't wish to discuss it. You don't owe strangers an explanation.

      2. If the listener is important to you, you can choose to educate them. You can say share a limited amount or disclose more, depending on the situation. The key is to always be respectful and to determine in advance what works best for your family.

  5. What should we tell family members and friends?
    1. Distribute Handout O: "What Should We Tell Family Members and Friends?" (parts adapted from Woolis, 1992)

    2. These facts can educate people about mental illness and can challenge some of the stereotypes and myths. Given the media's often sensationalized and inaccurate portrayal of mental illness, people may hold incorrect beliefs about the nature of mental illness.
      1. Although the exact causes of mental illness are not yet known, many illnesses have a strong biological / genetic component.
      2. Mental illness is very common! Over 6 million Americans suffer from mental illness, and psychiatric patients take up more hospital beds than patients with cancer, diabetes, arthritis and heart disease combined.
      3. Mental illness affects thinking, behavior, feeling and judgment.
      4. The course of mental illness is often unpredictable, as symptoms can come and go for no apparent reason.
      5. There are no known cures or easy ways to prevent mental illness - but doctors can help some of the symptoms with medications and therapies. The side effects of some medications can be unpleasant.
      6. Mental illness can be quite severe and chronic. They often have a strong impact, both emotionally and financially, on the ill person and those close to them. Therefore, these people need a great deal of support and understanding.
      7. Mental illness is not contagious.
      8. Individuals with mental illness are rarely dangerous; rather, they generally tend to fear people and be quite introverted.

    3. People can better understand the nature of mental illness if you compare it to cancer or diabetes. Many of the points on this handout apply equally to mental and physical illnesses. This explanation also gives people a better idea of how to support you.
      1. Because concerned friends or extended family members often do not know what to do, they may choose to do nothing, which can be very painful for the family. For example, Carol Grogan was quoted in Wasow (1995) as saying: "You couldn't conceive of a situation in which a relative wouldn't call you if your wife had severe diabetes. But if it's mental illness, forget it. No calls, no casseroles, nothing" (p. 61).

    4. People usually follow your lead regarding how much and what to say about your family member. Don't expect others to bring the subject up if you never do. It's helpful to assume that others want to be sensitive, but they are uncomfortable and do not know how to support you.
      1. Family members may feel hurt by others who do not say anything - or by people who try to be helpful but do or say the wrong thing. Research has documented that family members feel more depressed and distressed when other people deny the mental illness, avoid the family, or make critical and intrusive comments (Rauktis, Koeske & Tereshko, 1995)

      2. SOÖcaregivers need to tell others how they can be supportive. You need to tell them if it's helpful for them to: ask you questions, listen to you, give you advice, spend time with your relative, etc.

    5. Remember the limitations on how much you can change others' views and perceptions. Showing respect for how others are dealing with the situation is essential (even when it may be difficult). No matter how much people may try to distance themselves, they cannot escape the impact entirely. Each person's path and pace are unique, and the impact of the mental illness may differ across relationships (e.g., parent vs. child vs. sibling vs. spouse, etc).

    6. Human beings fear what they do not know or understand. Providing others with information helps them to feel more comfortable, which in turn will help them interact more effectively with your loved one. You may wish to share the following suggestions with concerned individuals:

      1. Remember that first and foremost, mentally ill people are human beings with needs and feelings like everyone else. Therefore, treat them with respect, even if their behavior may be confusing (Woolis, 1992). When they are present, avoid talking about them as if they are not there.
      2. Make efforts to compliment and praise the patient whenever you find an opportunity. Focusing on the positive can help their self-esteem and strengthen your relationship with them.
      3. Avoid overwhelming them with questions about themselves or their illness.
      4. Avoid telling them what to do (unless they ask for advice or they are in a dangerous situation).
      5. Attempt to maintain a calm manner when you are with them, as they may be hypersensitive and over-reactive to emotional ups and downs.