Families and Mental Illness

The Family Experience of Mental Illness

Professionals often refer to the impact of mental illness on families in terms of family or caregiver burden, which is the overall level of distress resulting from the illness. Sometimes the burden is divided into subjective burden, which is the personal suffering experienced by family members, and objective burden, which is the practical problems and hardships associated with the illness.

Subjective Burden

In describing their subjective burden, family members often refer to their feelings of grief and loss. Family members may mourn for the relative they knew before the onset of the illness, for the agony of their family, and for their personal losses.

They are likely to experience continuing feelings of grief and loss that wax and wane over a lifetime -- what has sometimes been called “chronic sorrow.”

Families sometimes feel as if they are riding an emotional roller coaster in response to the periods of relapse and remission that typically mark the course of mental illness.

Over time -- and usually with great difficulty -- most family members do come to terms with the mental illness and move on with their lives. Yet they continue to experience empathic pain for the continuing losses of their beloved relative and their beleaguered family.

Objective Burden

This subjective burden is accompanied by an equally heavy objective burden -- the family’s daily hassles and periodic crises. Along with the symptoms of the mental illness, families must cope with their caregiving responsibilities, family disruption and stress, the limitations of the service delivery system, and social stigma.

Depending on their relative’s diagnosis, family members may have to deal with positive and negative symptoms, disturbances of mood, potentially harmful or self-destructive behavior, socially inappropriate or disruptive behavior, and poor daily living habits.

At least periodically, families may be faced with household disarray, financial difficulties, employment problems, strained marital and family relationships, challenges to their own physical and mental health, and diminished social life. When they experience these problems on a long-term basis, with little opportunity for respite -- as many families do -- exhaustion and burnout are virtually inevitable. With ample reason, families also worry that their relative will experience homelessness, incarceration, isolation and abuses, life threatening accidents and injuries, and untreated medical problems.

Family members and consumers can attest that appropriate mental health services are not always available; nor are they always satisfactory when they are available. Further, professional services are often lacking for families themselves. For many families, the most oppressive component of burden is social stigma.

Often internalized by consumers and families, negative social attitudes and expectations may result in a debilitating sense of hopelessness and helplessness, lowered self esteem, damaged family relationships, and feeling of isolation and shame.

Family Resilience

Because family burden is so well documented in the stories of family members and the research findings of professionals, we sometimes lose sight of the potential for family resilience. In fact, as any NAMI member can attest, many families manage to prevail over their difficult life circumstances, creating satisfying and productive -- if tragically shadowed -- lives in its wake. Placed in perspective, the illness becomes only a single motif in the larger family portrait.

Family Diversity

Like families in general, families that include a member with mental illness represent a diverse group. They differ in social class, ethnic group, religious affiliation, and quality of family relationships. Because the impact of mental illnesses on individuals depends partly on its timing in their life spans and on their family roles, each member has unique experiences, needs, and concerns. Families also differ in their appraisal of the mental illness. For example, they may view the illness as temporary or permanent, their relative’s prospects for recovery as hopeless or hopeful, and their own burden as challenging or crushing. Similarly families may view themselves as helpless victims or active agents, as effective or ineffective problem solvers, and as a strong or weak family unit.

Strengthening and Supporting Families

Today, families meet many of their own needs through NAMI’s educational programs and support groups. Professionals can also do much to meet the needs of these highly stressed families. And there is a compelling case for doing so. First, as is the case for chronic health problems, families often serve as primary caregivers and informal case managers for their relatives. When professionals assist families in fulfilling these roles, they also promote the recovery of people with mental illness. Second, mental illness has a catastrophic impact on all members of the family. Depending on their particular circumstances, families can benefit from services that provide education, support, skills training, and crisis intervention. For instance, professionals can help families to:

* Assist their relative in obtaining treatment

* Understand and normalize their experiences

* Focus on the strengths of the consumer and family

* Learn about mental illness and community resources

* Create a supportive environment

* Enhance their coping skills

* Resolve their feelings of grief and loss

* Identify and respond to signs of impending relapse

* Develop realistic expectations

* Maintain a balance that meets the needs of all their members

Working together, consumers, families, and professionals can increase the likelihood that the vision of recovery will become a reality.

For more information about Mental Illnesses -

Contact:

The Alliance for the Mentally Ill

NAMI of Greater Chicago

1536 West Chicago Ave, Chicago, IL 60622

Phone: 312-563-0445