Chronic Illness

Approximately 35.3 million Americans, young and old, are limited in their daily functioning because of a chronic mental health or physical health condition. For the vast majority of these individuals, family is their first line of healthcare. Whether the member is a child with cystic fibrosis or an adolescent with diabetes, or a parent with multiple sclerosis or a grandparent with Alzheimer’s disease, it is the family, first and foremost, that cares for an ill loved one.

One member’s chronic illness influences the lives of everyone in the family. Roles and routines change. It may seem as if the medical professionals that care for the ill family member become part of the family. The demands of caregiving must be negotiated. Family members’ emotions may be on a continuous roller-coaster ride. On the other hand, families may come together and grow closer. Their lives may take on new meaning. They may find rewards they had not expected on their journey through illness. The only certain thing is that chronic illness is a family experience, one that is shared by all.

How can chronic illness affect the family?

There are several ways that chronic illness can influence family life:

• Daily routines may change because the limitations of the ill member and the demands of treatment may require that others be more available.
• Families may need to share caregiving responsibilities; this helps all members feel they are contributing to a loved one’s welfare and it also protects any single member from caregiver fatigue.
• Family members may experience strong emotions, such as guilt, anger, sadness, fear, anxiety and depressed mood. These are normal reactions to stress. It is useful to talk about these emotions within the family. 
• The ill member may need to find ways to be as independent as possible, given the limitations that the illness causes. 
• Despite the demands of the illness, families may need to work hard to maintain a sense of “normal” life. This can benefit the ill member, as well; it may help him or her integrate into family life more and may reduce the ill member’s sense of guilt regarding the demands the illness places on the family as a whole.

When should the family seek help?

At any time during the life of a chronic illness, family members or the family as a whole may need support from a trained professional, such as a Marriage and Family Therapist (MFT). Signs to watch for include:

In any of these circumstances, the family’s primary care provider can act as a resource for referring the family to a family therapist who is experienced with illness and collaboration with medical professionals.

What kinds of interventions are commonly used?

Families seeking help can expect a variety of useful interventions:

• Family Therapy: It is valuable for the whole family, including the ill member, to meet with a qualified Marriage and Family Therapist. During sessions, the therapist can help the family discuss how they are dealing with the illness, make decisions together, and learn how to utilize their own internal strengths and resources to address interpersonal problems. Family therapy sessions may also include medical professionals who are involved with the ill member’s treatment. This provides an opportunity for clarification of treatment and other issues, such as reasonable expectations for the future functioning of the ill member. 
• Multi-Family Group Psychotherapy: Families can benefit from meeting with other families who are also dealing with chronic illness. These family group meetings are usually time-limited (8-12 weeks) and include an educational component as well as discussion and problem-solving. 
• Individual Assessment and Treatment: Some family members may be experiencing symptoms of depression or anxiety that need to be addressed through individual assessment, appropriate medication, and individual therapy in conjunction with family therapy.
• Support and Psychotherapy Groups: Many organizations offer support groups that focus on a specific illness. These groups are a valuable addition to family and other forms of therapy. For persons needing more support, group psychotherapy is often also available.

Text provided by David Seaburn, PhD.

Resources

Aid for AIDS  Phone: 323-656-1107	American Lung Association  Phone: 800-LUNG-USA
American Lung Association  E-mail: friends@aids.org	Arthritis Foundation Phone: 404-965-7537
American Geriatric Society Phone: 212-308-1414	Cystic Fibrosis Foundation Phone: 800-344-4823
Alzheimer’s Association Phone: 800-272-3900	Epilepsy Foundation of America Phone: 800-EFA-1000
National Eating Disorders Association                                      Phone: 800-931-2237	The HIV/AIDS Community Treatment Information Exchange (Canada) Phone: 800-262-1638
American Brain Tumor Association Phone: 847-827-9910	Muscular Dystrophy Association, USA Phone: 800-572-1717
American Cancer Society Phone: 800-ACS-2345	Lupus Foundation of America Phone: 301-670-9292
American Chronic Pain Association Phone: 916-632-0922	National Association of Family Caregivers Phone: 800-896-3650
American Diabetes Association Phone: 800-342-2383	National Kidney Association Phone: 800-622-9010
American Heart Association Phone: 800-AHA-USA1	National Stroke Association Phone: 800-STROKES
National Parkinson’s Foundation, Inc. Phone: 800-327-4545