Chapter Three, Course WB1032
Impact of CFS
CFS has wide-ranging effects on patients, their families, friends, employers, coworkers and society, the most common of which are described below. People with other chronic, debilitating conditions may experience these same effects. The overall treatment plan should acknowledge these life-altering changes and the patient’s emotional reactions to them.
Patients
CFS has a variety of effects on people who have it. Common difficulties include 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 professionals, employers, coworkers and others do not recognize the seriousness or magnitude of their symptoms (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. See 
Appendix D (PDF – 61KB) for links to articles on pregnancy and sexuality issues in CFS.
Family Members and Friends
Chronic illnesses such as CFS affect not only the individual, but family members, caretakers and friends as well. Health care professionals should be alert to such family problems. These problems may be particularly important in CFS because healthy people find it hard to understand the variability of 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.
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, health care 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).
Consults with behavioral health professionals may be necessary to assist with identification and therapeutic interventions for underlying family problems that contribute to symptoms or that result from having a sick child or adult in the family. Recognition of these problems is key to instituting appropriate care management. The health care professionals can encourage all family members to participate in behavioral therapy programs to better understand family dynamics related to living with CFS.
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 for the person with CFS 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 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); also see Appendix A (PDF – 150KB) for information about this and other employment-related resources.
Referral to an occupational therapist may be worthwhile for people experiencing difficulty in the job setting.
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Content Source: National Center for Zoonotic, Vector-Borne, and Enteric Diseases (ZVED)