Chapter 2.5: Impact of CFS

Average completion time for Chapter 2 is thirty minutes.

CFS has wide-ranging effects on patients, their families, friends, employers, coworkers and society, the most common of which are described below. The overall treatment plan must address these life-altering changes and the patient’s emotional reactions to them.

Patients

By definition, CFS results in substantial reduction in previous levels of occupational, educational, social and personal activities. Patients may experience problems coping with the debilitating, variable and unpredictable symptoms; decreased stamina; difficulties with memory and information processing; uncertain prognosis; loss of independence, livelihood and economic security; alterations in relationships with family and friends; and feelings of isolation and abandonment. All of these issues can add to existing stress, which can exacerbate the symptoms of CFS (Lutgendorf et al., 1995).

People with CFS may feel traumatized and stigmatized because family, friends, medical practitioners, employers, coworkers and others do not recognize the incapacitating nature of their illness (Shlaes, Jason and Ferrari, 1999). Some people with CFS report expending considerable time and energy "proving" or "justifying" their illness and impaired function. Patients may also worry about bearing and raising children and the potential impact of decreased sexual activity on intimate relationships. Additional information on this topic can be found in Appendix: Chronic Fatigue Syndrome Resources.

Finally, depression is common in people with CFS. Feelings of worthlessness, inappropriate guilt, recurrent thoughts of death, recurrent suicidal thoughts, having a specific plan for committing suicide and prior suicide attempts define major depressive disorders. Behavioral health professionals in particular should be aware of and address signs of depression as necessary. All professionals who provide treatment and rehabilitation services for CFS patients should understand that inappropriately or inadequately counseled CFS patients could become suicidal.

Children and Adolescents

Adolescents and children may also develop CFS, although it is identified less commonly in people younger than 18 years than in adults (Jones et al., 2004; Mears et al., 2004). The 1994 definition was designed to identify adults with the syndrome, and these criteria may not be entirely adequate in assessing CFS in younger people. The unique aspects and challenges of chronic illness in youth, including CFS, warrant special mention.

Young people may not perceive or report medical information the same way adults do. They may use different words to describe their symptoms or may not have a complete understanding of their symptoms or emotions. Some ill youth lack a sense of “normal” and do not perceive their symptoms as indicative of an illness process.

Parents or guardians may be the main source for reporting health information. Adults’ observations may differ from the feelings and experiences of the child or adolescent (Jones et al., 2004). Consideration of information provided by both parents and children is recommended.

Damaged social relationships and isolation are common consequences of chronic illness in youth, and this is particularly problematic in adolescence. Efforts should be made to help the adolescent build and maintain relationships with peers and participate in enjoyable, age-appropriate activities.

School absenteeism—particularly in the early stages of illness—is common among children and adolescents with CFS. Absenteeism combined with problems in memory and concentration that accompanies CFS can result in delayed educational progress.

Students with CFS may qualify for educational accommodations under the Individuals with Disabilities Education Act or the Rehabilitation Act (U.S. Department of Education, 2004, section 2). Health professionals can help schools and families work together to develop appropriate educational plans for students with CFS. These may include reduced schedules, home tutoring, alternative test-taking conditions and counseling. The need for and effectiveness of alternate education strategies should be reviewed regularly because the goal of therapy is return to full participation academic, development, social, intellectual); as this is achieved, alternative education is not only no longer necessary, but may complicate full development.

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Family Members and Friends

Chronic illnesses, such as CFS, affect not only the individual, but her/his family members, caretakers and friends as well. Health care professionals should be alert to such family problems. Behavioral health care professionals should identify and address any underlying family problems that contribute to symptoms or result from having a sick child in the family. Identification of these problems is key to instituting appropriate therapy. Family reactions can range from skepticism to overprotection. Family problems may be particularly important in CFS because healthy people find it hard to understand the variability of the symptoms and unpredictability of function, particularly since there are no overt, visible signs of illness. CFS may cause a person to cancel plans or fall behind on duties or obligations, leading to further frustration and anger among family members and friends. Family members should be encouraged to participate in the treatment program.

Children of people with CFS can be deeply affected by a parent’s illness. Common issues include fear that the parent will die and abandon them, frustration or embarrassment that the parent is not like friends’ parents, and concerns about genetic risk or contagion. In families with an adult ill with CFS, professionals need to be aware of the impact on the child’s health and the potential projection of the adult’s illness onto the child. Healthy siblings of youth with CFS can feel that the person with CFS receives a disproportionate amount of the family’s attention or that they are expected to carry a greater share of the family’s load (Jackson, 1999).

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Employers and Coworkers

Frequent absences, uncompleted obligations, problems with memory and concentration, increased errors due to cognitive impairment, decreased physical and mental stamina and escalation of pain can cause problems in the workplace. The lack of obvious physical signs of illness can lead to accusations that the person with CFS is fabricating symptoms to avoid responsibilities. Finally, accommodations by the employer may cause resentment, misunderstandings and claims of special treatment by coworkers.

Although federal laws protect the rights and jobs of the disabled who are able to perform their essential job functions, the emotional and social aspects of having a person with an "invisible" disability in the workplace are not addressed by the legal system. The Job Accommodation Network has a fact sheet on accommodations for people with CFS (Loy, 2006, section 4, Accommodating Employees with CFS); see Appendix: Chronic Fatigue Syndrome Resources for information about this and other employment-related resources. A referral to an occupational therapist may be worthwhile for people experiencing difficulty in the job setting.

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