Chronic fatigue syndrome (CFS) can affect virtually every major system in the body, as neurological, immunological, hormonal, gastrointestinal and musculoskeletal problems have been reported. An estimated 25% of patients with CFS are confined to their homes, while others continue to work at least part time but drastically curtail their social activities.(1)

Given the wide array of symptoms, it is difficult for health care practitioners to fully understand what patients go through on a daily basis. We need to consider social, emotional and family effects as well as the physical symptoms. Individuals coping with CFS progress through four qualitatively distinct phases (2) as they learn to better deal with their illness. In fact, how they respond to treatment may be different depending on the phase they are in. Following is an explanation of The Four Phase Model of chronic illness using a real patient case.

Phase I--Trauma/Crisis

Physical. "Kathy" is a married woman in her late thirties with two children. She works part-time at a bank. Although she has never had more than occasional colds, a number of physical symptoms are starting to interfere with her life and work. Kathy is always tired and her vision seems blurry. Her muscles and joints ache and her throat is often sore. She feels like she has a continual case of the flu. Kathy is in a coping stage of phase I, where even though she does not feel well most of the time, she is generally able to ignore her symptoms and continue her regular activities.

Eventually her condition deteriorates enough so that she cannot ignore it, and she enters the onset stage. Kathy's physician examines her and they talk about work and home life. The physician tells her that the symptoms are likely due to stress and recommends that she relax, get more sleep, cut back on work and join an exercise class. Despite following that advice, her symptoms worsen. Kathy is entering the acute crisis stage.

Psychological. Kathy does not know how to explain her symptoms and has increasingly painful experiences caused by her mood swings and the absence of any useful information about her condition. She worries about what is happening and what other people will think of her. She is experiencing a range of emotions she has never faced. Due to the lack of recognition and support from the health care community and society at large for the vague and varied symptoms of chronic illness, patients initially conspire with others to deny their symptoms in an effort to remain "normal." In the acute crisis stage, they realize that their denial will not work and become fearful, ashamed and lonely. Kathy returns to her physician, who orders extensive tests. Her fears magnify. It is not until almost a year later that she is given a tentative diagnosis of CFS.

Social. Kathy's co-workers, husband and children have noticed the changes. Their responses range from suspicion to support. Some imagine that she is crazy, lazy or just evading work. Others believe her but feel helpless to do anything about it. During phases I and II, patients are stigmatized and rejected by others, which results in further trauma both to themselves and to their families. How well the
individuals deal with the trauma depends on the maturity of the family unit. Kathy's family members learn to censor how much they say about her CFS and to whom.

Case Management. It is often difficult to manage chronically ill patients, given the time and financial restrictions imposed by some health organizations, which preclude lengthy office visits and force a focus on acute symptoms. Practitioners can best help patients in this phase by understanding their sense of urgency, facilitating a diagnosis and providing support for them and their families.

Phase II--Stabilization

Physical. As phase II unfolds, Kathy proceeds from the emergency phase to the plateau phase. Her symptoms assume a familiar cyclic pattern she begins to recognize. Kathy attempts to create order out of chaos by creating a set of parameters around which she can function. For example, she knows if she climbs stairs in the morning, she will not be able to do so again later in the day.

Psychological. The diagnosis gives Kathy a way to understand and describe her experiences to herself and others. However, as a result of the stigma, she withdraws emotionally from society and becomes more cautious about expressing her physical pain and emotional discomfort. In addition, her physical condition itself interferes with her reaching out socially. Kathy is also experiencing boundary confusion-she cannot perform the same tasks that she used to, and realizes that despite pressure to return to her old level of activity, she is failing miserably. She feels child-like, not completely confident that her body, brain or emotions will "behave" in any given situation. She believes that because her medical outcome is uncertain, a cure must be a possibility. She attempts to find a practitioner who will offer her better treatment and, she hopes, a cure. Even though there is no cure, this is Kathy's a way of exerting some healthy control over the traumatic changes in her life. Sadly, this behavior erodes the
relationship she has established with her primary care physician, who regards her actions as dysfunctional.

Social. Kathy's friends, family and co-workers are also losing patience with her condition and her failure to become "normal" again. Family members are frustrated both by having to witness her suffering and experiencing social stigma by virtue of being associated with her. This societal "marginalization" of those who associate with the stigmatized can also be experienced by clinicians.

Case Management. During this phase, clinicians need to recognize that patients are attempting to learn more about their illness experience and should help them find ways to adapt to their new range of capabilities. Patients support systems are encouraging them to "return to normal," and most will go to great lengths-including trying questionable treatments-to meet that expectation. Without informed clinical guidance, chronically ill individuals can become caught in a repeating cycle of phases I and II.

Phase III--Resolution

Physical. True entry into phase III comes when patients finally recognize that they cannot function as they have in the past, and recognize that relapses, if they occur, are part of the normal cycling of chronic syndromes. Kathy enjoys periods of stabilized symptoms, and sometimes even improvement, but still has relapses.

Psychological. Patients in phase III suffer a normal grief reaction when they realize that their lives have changed permanently and that they will never return to the person they once were. They are redefining themselves and regaining control by letting go of the search for an elusive cure and integrating their illness into their lives. However, they may fall victim to predatory providers of not-so-helpful care at this time or succumb to their own despair and thoughts of suicide. Kathy is lucky--with the help of her new CFS friends and a social worker, she explores the grief she feels for the loss of her old self. She also begins to deal with her own spiritual questions and locate meaning for her existence and illness. This allows her to navigate the difficult course between necessary grieving and foundering in clinical depression.

Social. Kathy is also going through a tough time at home-she loses a key supporter as her marriage dissolves. She is coping at her job, but knows that depends solely on the understanding of her supervisor. She begins to think about other ways to fulfill her social and vocational needs. Kathy has also started to speak in public about her CFS, and is sometimes met with negative reactions. She learns to confront stigma and bias, and is surprised at how empowered it makes her feel.

Case Management. The role of the clinician is never more crucial than in phase III. The best way to help patients integrate illness into their lifestyle is to bring a social worker or counselor onto the patient care team. Clinicians also need to consider their own support network. It is not uncommon for experienced practitioners to feel disbelief and frustration in response to working with chronically ill patients, reactions that can lead to burnout and missed opportunities for effective interventions.

Phase IV--Integration

Physical. Phase IV may bring continuous plateau, improved well-being or possible relapse. For the most part, Kathy's symptoms are still stable. However, this does not mean that life has become easy. Sometimes she is so debilitated she must use a wheelchair, which she hates, and she still becomes
mentally confused, especially if she overextends.

Psychological. The real change is that Kathy has created a new "ideal self" and is using it to transcend her illness. In phase IV, patients have achieved an integration of the pre-crisis self with the newly-claimed, respected self who has suffered and endured. Kathy continues to pursue her own emotional and spiritual growth, and only has occasional need for clinical help.

Social. Patients in phase IV develop new friends and sometimes new partners. Hopefully, through intervention, they may also be reintegrated with alienated family members, friends and lovers. Kathy changes her job and decides to take a position running a web site from home. Her husband has remarried, but she is moving on, and has even submitted part of her journal to a CFS newsletter.

Case Management. Practitioners should keep in mind that most patients do not live in phase IV; the pattern of chronic illness is cyclic and requires ongoing oversight. If a serious blow (physical or psychological) knocks a patient back into phase I, they may turn again to a helpful clinician to speed the process of integrating the experience into their lives. Dividing the case management responsibility appropriately among members of the health care team (including physicians, physician assistants and social workers) will help ensure that the patient and his/her family stays on track.

References

From The CFS Research Review, Spring 2000. Reprinted with permission from The CFIDS Association of America.