Family reactions to Mental illness

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Does this sound like an appealing job description?Yet how many of you do this job every day?

Family response to illness - Coping with a loved one’s poor health (physical or mental) is difficult, regardless of the nature of the illness.
Many factors affect how a family responds to changes in health, including the:

Family’s social-support system

  1. Family’s previous experience with and/or knowledge of the illness
  2. Family’s coping patterns and resources
  3. Access to and quality of health care
  4. Financial status
  5. Type of onset of the illness (sudden vs. gradual onset, public vs. private, etc.)
  6. Nature of the symptoms
  7. Demands upon families
  8. Consumer’s compliance or refusal to participate in his/her care
  9. Course/prognosis of the illness

However, some factors are specific to a family’s experience of a loved one’s mental illness.

How is it different for your loved one to struggle with a mental illness versus a physical one?

  1. Others’ reactions to him/her may be unpredictable and sometimes even hurtful.
  2. Family members may feel guilty that they somehow caused the illness or could have prevented it.
  3. Family members may fear others’ blaming them for causing the illness.
  4. The prognosis and course of treatment are often more concrete with physical illness. There may be more uncertainty and variability with mental illnesses.
  5. Some behaviors exhibited by individuals with mental illness can be embarrassing for the family.
  6. Doubt about mental health diagnoses (uncommon with physical health diagnoses) may delay consumers/families from accepting a diagnosis, which can postpone treatment.

“With greater frequency than for medical diagnoses, mentally ill people will reject medical diagnoses, will refuse to participate in efforts to become well, will be angry and hostile toward families, and will be unable to express gratitude for the care they receive” 

What are the consequences of these differences for families?

  1. Increased sense of isolation and/or “being different,” which can result in social withdrawal
  2. Fear of telling others about the illness
  3. Fear of asking for help
  4. Heightened conflict within the family

Stages of emotional responses of families to mental illness

We will review two models that describe family reactions to mental illness. These models are helpful in understanding the process but are not meant to be a treatment strategy. The stages in the following models are not necessarily sequential or universal. Family members may repeat stages or get stuck in one particular stage. Each family member may respond differently to the mental illness, and members are often at different stages. Gaining some understanding of the various reactions family members experience can ease inevitable tensions and potentially increase acceptance of different responses within a family.

As I present the following models, you may wish to reflect on your personal and family experience of responding to mental illness. Where are you now? Where were you a year ago? Where were you 5 years ago? Are your family members at different stages? Where would you like to be?

Model 1 {shorthand}

Heads out of the sand, This first stage occurs when the family realizes that their loved one has a mental illness. The family unit may deny the severity of the problem and hope that their loved one will “grow out of it.”At this stage, families need education (especially about prognosis), emotional support, and crisis-intervention services.

Learning to cope, In the second stage, families grow in acceptance of the illness, and a variety of emotions may intensify (e.g., anger, guilt, grief, etc.).During this time, families need opportunities for peer support, education, and skills in self-care and coping with the mental illness.

Moving into advocacy, Some families move into advocacy roles as part of their emotional response. Their understanding and acceptance of the mental illness have grown, and they may support other families who are struggling with similar issues.

Families need assistance in maintaining balance in their own lives and assurance from professionals that the mental health system will continue to be responsive to the needs of the consumer and family.

Model 2 {detailed}

Emotional isolation (before a firm diagnosis)

  1. This stage may include a wide variety of feelings, such as:
  2. Fear and confusion about the consumer’s behavior
  3. Uncertainty about how to feel
  4. Bewilderment about the chaos of the situation
  5. Questioning of what I did wrong as a mother/spouse/child to cause the illness
  6. Hope that the behavior will just go away (e.g., midlife crisis; adolescent rebellion; “change of life,” etc.)

Hope and compassion (at the time of getting a diagnosis)

  1. The diagnosis can clarify much of the confusion of stage one and may
  2. Elicit optimism and sympathy in families
  3. Involve much learning and study about the illness
  4. Involve hope that a combination of medication, therapy and family love will bring a rapid cure
  5. Include “heroic measures” to cure the person
  6. Lead family members to embrace the caregiving role
  7. Be very reassuring for both the consumer and family, as it can clarify a long history of confusing behavior

“Well, before she was diagnosed as being bipolar, I was seriously thinking about getting a divorce because she was just so argumentative. You know, after she was diagnosed it was something; it was not a character or personality issue…it was something that she had no obvious control over and could be treated with medication.”

Loss of dreams and resentment (as the family realizes the illness is likely a permanent condition)

  1. Experience anger and resentment as they feel powerless in changing the consumer’s situation
  2. Revise their expectations of the consumer
  3. Experience role reversal (e.g., child taking care of depressed parent)
  4. Experience resentment when they have to give up their own goals and activities to help the consumer
  5. Become isolated from their support network because of the demands of dealing with the illness:

“Wonder about the consumer’s ability to control his/her behavior and struggle with how to interpret objectionable behaviors. For example, family members may ask, “Do we blame the person or the illness?” for this behavior. Families struggle with the dilemma of loving the person but hating the illness. Families also wonder whether the consumer may be being manipulative at times (e.g., using the illness as an excuse).

Recognition that families cannot control the consumer’s illness, followed by acceptance

  1. As families move into the acceptance phase, they can:
  2. Feel relieved of a sense of responsibility to fix the problem
  3.  I did not cause it, I cannot control it, I cannot cure it. All I can do is cope with it .
  4. Gain respect and admiration for the consumer’s struggle and strength