3.2. Elizabeth’s Story: Phase 1
3.2.1. Physical-Behavioral Domain
Elizabeth is a married white woman in her late 30s. She has two children, Eva, age 13, and Michael, age 11. Jim, her husband, is a sales consultant, which often requires him to work out of town for one or two weeks at a time. Elizabeth works at a medical practice in the suburb where the family lives.
Over the past several months, Elizabeth has been increasingly distracted by a number of physical symptoms that are beginning to frighten her because they are interfering with her life and her work. She is exhausted most of the time and is not sleeping well. She thinks, at first, that she is just not completely recovered from a recent respiratory infection, but months are passing, and she still feels completely drained. Elizabeth has never been sick with more than occasional colds, so she rarely sees the doctor. At first, she does not think her situation is very different from that of a lot of her friends, because all the working mothers she knows are always tired, too. She just keeps trying to carry on with her regular activities, snatching whatever moments she can to nap or at least rest. However, as time is passing, she is finding it more and more difficult to get dressed, drive or work for any length of time when she arrives at her job.
Elizabeth is just entering Phase 1. Physically and behaviorally, Elizabeth is attempting to cope with her symptoms. Even though she feels very unwell, she tries to ignore or “push through” her symptoms, to push them out of her consciousness, and to continue her regular activities.
Eventually, however, Elizabeth’s exhaustion, increased muscle pain, and headaches make it impossible for her to ignore her symptoms; she has trouble climbing the few steps into her front door. Now she is entering the acute onset period. Elizabeth decides to go see her primary care physician.
The doctor listens to Elizabeth describe her symptoms and gives her a physical examination. They talk a bit about her new limitations at work and at home. The doctor tells Elizabeth that test results do not reveal anything physically wrong with her. He suggests her exhaustion may be due to her poor sleep. He wonders if the many demands of her job and family life may be causing her difficulties. He also thinks that she may be mildly depressed, but not enough to require medication. He wants to follow up with her in six weeks and recommends that Elizabeth relax, try to get to bed earlier, cut back at work, and perhaps join an exercise class to help relieve her symptoms.
Elizabeth wants to follow the doctor’s suggestions, but she does not dare cut back at work any more than she already has because the family needs the income from her job. Additionally, she cannot imagine how she could take an exercise class given her increasing difficulty ambulating from the bedroom to the bathroom. Additionally, it is not so much that she gets to bed late as that she wakes frequently at night and cannot get back to sleep again because her body aches and she feels as if she is oddly moving or vibrating. Her symptoms progressively worsen. Not only is she extremely fatigued, she experiences more and more trouble thinking. She is having memory problems, word finding, and concentration difficulty. She became tearful when she could not remember her home address when asked.
Elizabeth is now entering the acute emergency period. After six weeks, Elizabeth returns to her primary care physician who orders additional blood tests and refers her to a psychiatrist to assess her stress level and rule out clinical depression. The psychiatrist reports that Elizabeth appears to be suffering from reactive depression in response to her physical condition. The blood work results raise questions that cause the primary care doctor to refer Elizabeth to a rheumatologist. For months, she is examined, tested, and enters the diagnostic limbo of uncertainty and ambiguity. It is not until almost a year later that the rheumatologist is able to give Elizabeth a tentative diagnosis of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. Even now, some of the doctors are not really sure it is ME/CFS.
However, having a diagnosis, even a tentative one, makes an enormous difference to Elizabeth, for it finally gives her a way to at least partially understand and describe her experiences to herself and others.
3.2.2. Psychological Domain
During Elizabeth’s lengthy coping and subsequent onset periods, she uses denial as a coping mechanism. Denial comes into play after her initial visit to her primary care physician, who tells her that he suspects she is mildly depressed and suffering from stress. She wants to believe that is an accurate diagnosis and so she agrees with her doctor, her husband, and the people at work that it is possible for her to return to her daily life.
However, as Elizabeth’s symptoms worsen, other feelings begin to intrude. Like many people, Elizabeth has constructed two selves—a private persona and a public persona. Additionally, like others, Elizabeth reveals more or less of her private persona to individuals in her life depending on how intimate she is with them and what particular situation she is in. As Elizabeth’s condition continues to deteriorate, she finds that her private persona is beginning to intrude on her public persona in ways that she cannot control. One day at a virtual staff meeting with the medical practice (where she now works part-time in billing from home, as meetings with her have to be virtual with her out of the office), Elizabeth suddenly bursts into tears. She feels embarrassed that she may have made her superior and coworkers feel uncomfortable, and as they comfort her, she feels like a burden to them. This behavior is not the self that Elizabeth recognizes. She cannot identify why she feels the way she does, and because of her uncertainty regarding her health, she feels as if she is losing control. She feels shame about her loss of control, and increased fear and despair about the uncertainty and ambiguity of her condition. She knows she feels terrible physically and is getting worse, and she worries she could actually be dying; at the same time, she feels dissociated, and she wonders if she could be losing her mind. It is important to remember that at this point no one has yet given Elizabeth’s situation a definitive label.
Elizabeth has no effective way to express how she is feeling and when she tries, the people she talks to can only make up explanations and suggestions for improvement based on their own personal experiences, not on an understanding of what is happening to her. Elizabeth feels increasingly isolated because she fears what is happening to her and what other people will think of her. She is particularly afraid to talk to the person who used to be closest to her—her husband, Jim. Elizabeth and Jim have already been having marital difficulties due to conflicts over money and the amount of time Jim needs to be away from home. Elizabeth feels that Jim, by default, gets out of his fair share of home and child care duties. She struggles with basic activities of daily living and she increasingly relies upon her children’s help. She fears she cannot quit her job, because the family cannot make ends meet without her part-time salary. In any case, she likes her job, which she used to do very well. She has received a lot of praise at work, especially from her supervisor, and she and Jim had both been hoping that she would get a promotion. The new position would have brought in more money, but Elizabeth would have to work full time and now that would be impossible.
In part, as a consequence of her pain, her fears, the lack of useful information about her condition, and her growing isolation, Elizabeth now begins to suffer emotionally with grief and anger from her suffering and losses. Half the time she is in tears, she says, and the other half she is furious. Jim has tried to be sympathetic, but now he is getting frustrated. The children act scared of her and disappear whenever possible. Even Elizabeth’s coworkers find her muddled and distracted, whereas she used to be focused and attentive. Elizabeth is losing her life as she has known it, and she is frightened she will never get it back.
3.2.3. Social-Interactive Domain
Many of Elizabeth’s psychological mechanisms and reactions result directly from what is happening in her social-interactive life. During the coping and onset periods, Elizabeth’s family, friends, and coworkers respond in various ways to her experiences. They notice only that she is tired a lot of the time and missing work and for a while, they are sympathetic. She is a hard worker, and her female coworkers, particularly, have a strong personal understanding of how hard it is to juggle a job, home, and children. As Elizabeth accomplishes less and misses more and more work, however, they become critical. They have difficult lives too, but they manage to come to work, and they accomplish their assigned tasks.
Elizabeth’s children think that she is acting strange. She does not behave like the mother they are used to. Jim finds her unpredictable and emotionally extreme. He is used to hearing Elizabeth say she is tired, but her complaints seem so serious that Jim is genuinely worried and urges her to go to the doctor. The doctor’s diagnosis of suspected depression and stress seems reasonable to Jim, and he makes an effort to help more by staying in town or taking only short jobs away from home. However, that cannot go on forever, and Elizabeth does not seem to change. He thinks she could do a lot more if she tried, but she seems just to complain or sleep.
During the acute emergency period, while Elizabeth is being examined and tested extensively, Jim sometimes wonders whether anything is actually wrong with Elizabeth—maybe it is “all in her head”. Some of her coworkers feel that way, too. Maybe Elizabeth is having some kind of emotional breakdown.
Finally, Elizabeth gets her diagnosis, however tentative, of ME/CFS. Although this gives her the relief of a name and an explanation, she now finds that the illness has put her squarely on the forefront of a cultural debate. Caught in a mesh of divergent popular beliefs regarding her partially understood disease, Elizabeth finds that some of her friends and coworkers—even some of the medical personnel she sees—view her negatively. For the first time in her life, Elizabeth begins to experience rejection by the society at large. She becomes very cautious about expressing her fears or revealing her pain because she does not want others to withdraw from her. Not only is she afraid of other people now, but her physical condition itself interferes with her reaching out socially.
Elizabeth’s home life was already stressed prior to the onset of her illness, and after enduring the coping, onset, and acute emergency periods, her illness has greatly exacerbated the situation. At the medical practice, Elizabeth’s immediate supervisor is sympathetic because the supervisor’s sister has fibromyalgia, can no longer work, and is on disability. While lacking an understanding of the complexities of Elizabeth’s condition, her supervisor is sympathetic to Elizabeth’s problems and wants to help. Upper levels of management, however, think that Elizabeth should probably be replaced, and it is unclear how effective the supervisor’s advocacy will be. Fortunately, on the medical front, Elizabeth’s primary physician has become very involved with her case but cannot spend as much time as he would like to talk with Elizabeth and must focus on assessment and treatment of her acute physical symptoms. Time does not allow the doctor to discover in depth how Elizabeth is feeling or how she is coping with the whole illness experience. A few family members and friends are wondering whether she should consider filing for disability.
3.4. Elizabeth’s Story: Phase 2
3.4.1. Physical-Behavioral Domain
During Phase 2, Elizabeth attempts to carve order out of chaos. Her physical situation is very limited but seems to have stabilized. Only a few new symptoms have suddenly surprised her. None of her present symptoms seem to be getting progressively worse, at least for now. Her symptoms do not disappear, but they usually do not exceed patterns that she is beginning to decipher. If she has an especially bad night sleeping, she knows that she will probably have an especially bad day. She will have more pain and more cognitive confusion. If she does two hours of steady activity, she knows that her body aches are likely to increase and her glands will probably swell. Life is very difficult, but Elizabeth has identified a set of parameters around which she can function. Her health care professionals discuss a few of these parameters with her, but for the most part Elizabeth discovers them on her own. To some extent, her newfound knowledge also orients the people around her.
While in Phase 2, Elizabeth suffers two significant physical relapses beyond her usual baseline of functioning. Each time, she suddenly becomes far more exhausted than usual. She cannot even lift herself out of bed without physical assistance but feels as though she is being pulled down through her bed toward the center of the earth. Her head aches, her glands are very swollen, she has nausea, and she becomes intolerant of light and sound. She cannot organize her thinking at all. However, both times she relapses, she eventually returns to a plateau of stabilized symptoms that she recognizes and can negotiate.
3.4.2. Psychological Domain
Over time, Elizabeth’s physician becomes increasingly convinced that the tentative diagnosis of ME/CFS does indeed fit her symptoms, and thus, her tentative diagnosis is confirmed. Initially, she feels enormous relief. Finally, she has an explanation for why she is so exhausted, why she cannot sleep, why she has muscle pain and headaches, and why she sometimes becomes cognitively confused. Her uncertainties also lessen as she begins to recognize her symptom pattern. Furthermore, diagnosis gives her a framework to learn about her condition so that she can exert a semblance of control over her life again. When she can read, she reads everything she can about ME/CFS and seeks out others with ME/CFS so that she can discuss her situation in a supportive setting.
However, Elizabeth quickly learns that the diagnosis does not explain how her illness started or what is going to happen in the future, so painful uncertainty and ambiguity return. No one seems to know what to do to cure her. No one can make her symptoms stop, and no one seems able to tell her how she is supposed to live her life under these conditions.
Elizabeth grew up believing that if she worked hard and told the truth, everything would eventually come out all right in her life. However, here she is, working hard to get better, telling the truth when she talks to family members and friends and clinicians, and yet a significant percentage of the time she finds not acceptance, but rejection, from many people. In fact, she is sometimes being blamed. So Elizabeth has become extremely cautious. She carefully censors what she says and to whom, and whenever she possibly can and for limited periods of time, Elizabeth carries on as though she is well and nothing is wrong with her. Elizabeth decides to avoid such secondary wounding by withdrawing from any social contacts that may evoke negative judgments. Instead, she tries to get in touch with other ME/CFS patients and ME/CFS advocates because they are likely to be helpful and will understand her situation. She continues to read about her condition and seeks sources of emotional sustenance to try and make up for the multiple losses she has suffered.
Because her medical outcome is uncertain, and Elizabeth still believes that a cure must be a possibility, she suspects that her health care professionals are not adequate to deal with her problem. She collects the names of other doctors from friends and new ME/CFS acquaintances and attempts to find a professional who will offer her better treatment and, she hopes, a cure.
Unfortunately, Elizabeth finds limited guidance and meets with confusing responses and even outright hostility as she consults other doctors, so she attempts alternative treatments. A practitioner of shiatsu massage listens to her with enormous empathetic patience, but she cannot continue to afford the sessions, and it is unclear if they are helpful. Elizabeth’s cousin urges her to try acupuncture. A former coworker swears that a complicated vitamin and supplement regime returned her bedridden niece to full functioning and would do the same for Elizabeth.
Elizabeth has lost a sense of her boundaries. To others, she seems to have given up and they are confused, not grasping how exhausting it is for her to remain in ongoing contact. Elizabeth’s family and employer are encouraging, even urging, her to return to her former roles and schedules. However, Elizabeth‘s efforts to return to these roles can have dangerous repercussions. She has trouble getting up in the morning and doing her basic activities of daily living. She showers weekly and washes her hair bi-weekly. Her husband has to make the children’s school lunches. She can no longer serve on committees at her children’s school because she can just barely keep up with basic self-care. In fact, she rarely leaves the house and only when her husband or a friend is driving. Her last attempt behind the wheel left her terrified and exhausted after a near miss at a stop sign she had not realized she had run through. Nothing about her body or her emotions or her mind acts the way it did in the past, and yet Elizabeth keeps trying to behave as though she were the person she used to be. Despite her efforts, Elizabeth fails daily at what she attempts, and daily she feels guilty and ashamed. Increasingly, she feels worthless.
3.4.3. Social-Interactive Domain
Elizabeth experiences growing conflicts with family, friends, and some of her medical care providers as they lose patience with her failure to become symptom-free or to adjust to her illness in a way that allows her to return to her former functioning. Although she has a diagnosis, such treatment as she receives does not produce rapid, let alone any significant, improvement. At one point when she was barely sleeping, Elizabeth’s doctor put her on a course of medication. She somewhat improved, but she still has consistent difficulties.
Jim has told Elizabeth that she is no longer the person he married and this is not the life he signed up for. She has got to change if their marriage is to continue. Sex has stopped and she barely has the energy to regularly watch a movie with him. Elizabeth can tell that her coworkers are annoyed and believe that she could function a lot better if she just pulled herself together and put her mind on the job. One of them knows a ME/CFS patient of moderate functioning and tells others at work that she cannot understand why Elizabeth does not manage as well as her friend does. Elizabeth is not imperceptive. She knows that people think she is not trying hard enough. To make matters worse, a close friend with deep religious convictions has urged Elizabeth to pray, saying that if Elizabeth has a sincere desire to get better and asks for God’s help, God will cure her. Elizabeth does not share her friend’s convictions, but deep inside she fears that maybe she is sick because she is somehow unsatisfactory in God’s eyes.
As Elizabeth goes through relapses, all the people in her life experience them as well. They become as exhausted by the process as Elizabeth does, and they are traumatized just as she is. Jim has lost the wife he married and the life he had, and his new life is not at all what he wants. Their son, Michael, has always liked school and has done well, but now his grades are beginning to suffer and it is difficult to participate in sports since his mom cannot drive anymore. Eva is behaving badly at home, and she has been acting out, and repeatedly disciplined at school. Both kids complain that their mom never comes to their soccer or baseball games and are embarrassed to rely on friends’ parents to drive them. Elizabeth does not know how much of this is just a part of adolescence, or whether Eva and Michael are reacting to her health problems and her arguing with Jim over money, the division of labor at home, and her condition. Elizabeth’s husband and children are not mean spirited. They are sad and scared to see this person who is very important to them suffer pain, confusion, and unhappiness. Outside the house, they suffer a kind of guilt by association. Eva’s friends sometimes treat her as though she is as weird as her mother, and Eva overheard one of them say that Eva’s mom was an alcoholic who was always hungover. Jim’s boss is clearly concerned about whether Jim will be able to fulfill his job obligations, given the demands of Elizabeth’s illness. Some secretly wonder whether ME/CFS might be contagious and just for safety’s sake, many keep their distance.
Even Elizabeth’s doctor is affected. Some clinicians who treat ME/CFS patients report that colleagues are skeptical when making referrals. Specialists in ME/CFS sometimes even meet skepticism in social settings. A neurologist to whom Elizabeth’s doctor was going to refer her said that he did not think ME/CFS was a valid diagnosis and that he believed Elizabeth was suffering from a psychological condition.
As normalization failure is so common in Phase 2 [2
], like the chronically ill person, those around them may turn to alcohol or drugs. People in the social network may avoid or even abuse the chronically ill individual. Any of these factors, or a totally new factor, can produce another crisis in the chronically ill, returning them to Phase 1. Jim’s mother dies and the entire family must deal with that loss. Later, Elizabeth has a high fever during a bout with the flu that triggers a severe relapse.
Elizabeth is a fortunate person with chronic illness in that she has some warm and loyal friends. Her supervisor persuades management to let Elizabeth try working remotely with just a few hours a week doing billing as she is able. Additionally, a social worker newly affiliated with Elizabeth’s doctor’s office becomes involved in helping Elizabeth cope with ME/CFS.
3.5. Phase 3: Resolution
Without informed clinical guidance, many chronically ill people become caught in a repeating cycle of Phase 1 and Phase 2 [2
]. Each new crisis produces new wounding and secondary wounding [55
]. With luck, following each crisis the patient manages to arrive at a plateau of recognizable symptoms, until the next crisis sends the whole system into chaos again. Some people, particularly those on the margins of society who have almost no sources of support, never escape Phase 1, but are buffeted from crisis to crisis.
The personal, familial, and societal pressures heaped upon the patient to return to the pre-crisis life are enormous and can help maintain a cycle between Phase 1 and Phase 2. Most patients present to clinicians in Phase 1 or Phase 2. Repeatedly, they are urged by family and friends to try the next “cure”, and in their growing desperation frequently do so. The clinicians also feel the omnipresent pressures to repeatedly treat the chronic patient. This approach will ultimately fail, frustrating all parties involved. Because they are all still struggling in the chaos of the crisis phase, or they are in the stabilization phase and have achieved some equanimity, however brief, they are not ready to grasp that it is highly improbable that they will return to the pre-crisis life and that they have to transition to a new life—a new way of being in the world.
This is the universal clinical treatment problem between Phase 2 and Phases 3 and 4: how to facilitate this painful transition for what is actually possible with a severe disabling chronic condition; otherwise patients never escape the futility of a Phases 1 and 2 cycle. Without an understanding of the nature, breadth, and depth of ME/CFS suffering and without a grasp of the longitudinal, cyclical experience of the phases, health care professionals will find it difficult to compassionately assess and treat ME/CFS patients. Important opportunities for a better, albeit a different life, can be missed.
3.5.1. Physical-Behavioral Domain
Most Phase 3 ME/CFS patients who are severely or very severely affected maintain a continued plateau, but relapses occur. Sometimes old symptoms worsen or new symptoms appear. Some ME/CFS patients experience modest periods of improvement and some have learned to balance activities to keep from relapsing [13
]. If a relapse takes place, it is sometimes in response to the typical cycling of ME/CFS symptoms, but it may also be triggered by persistent attempts to engage in pre-crisis tasks, roles, and pursuits. True entry into Phase 3 comes, however, when ME/CFS patients recognize that they cannot perform as they used to in the past. Table 3
lists the stages and characteristics of Phase 3.
3.5.2. Psychological Domain
ME/CFS patients in Phase 3 suffer a secondary emotional crisis or grief reaction when they acknowledge the chronic nature of their condition. They finally realize that their lives have changed forever, and they begin the process of mourning their pre-crisis self. They typically feel demoralized and devalued, for they see that they can no longer carry out their previous roles in life—as parent, worker, lover, friend—in the way they had always thought they would. They may question what good they are, who they are, and why they should continue to exist at all. This appropriate, necessary grief reaction—their “dark night of the soul”—is a tenuous time. Individuals can be lost in their own understandable withdrawal, fall victim to predatory providers, or succumb to despair and thoughts of suicide [2
]. Research suggests a relationship between suicidal ideation and illness identity [103
], and as patients grieve losses that have resulted from their illness, the negative identity associated with the illness can be worsened. Yanos and colleagues [104
] propose that patients’ conceptualization of their illness identity can affect their hope and self-esteem, which further increases the likelihood of suicide. Given the susceptibility of ME/CFS patients to experience threats to their identity and role confusion, afflicted patients who feel stigmatized may turn to suicide due to a reduction in their self-esteem. Indeed, evidence supports this conclusion, as suicide has been identified as a cause of death for a significant number of ME/CFS patients [105
]. Additionally, patients who commit suicide appear to lack sufficient depressive symptoms to qualify for a depression diagnosis, as their depressive symptoms may better be associated with grief [107
]. Evidence suggests that losses associated with ME/CFS and perceived stigma may be likely risk factors for suicidal ideation [42
]. Individuals may be traumatized at various points during this often cyclical process.
If, however, the patient with ME/CFS can work through this existential angst and establish meaning in their lives, they can then take marked steps toward constructing an authentic new self and a new life [84
]. Indeed, individuals with a chronic illness or disability report higher post-traumatic growth than do those without a chronic illness or disability [108
]. Many patients report new insight due to their illness experience [90
] and some reported having a more confident and assertive personality as a result of having ME/CFS [16
]. However, post-traumatic growth was found to be lower among women with ME/CFS than among women with rheumatoid arthritis, osteoarthritis, and multiple sclerosis, perhaps because of the greater levels of stigma women with ME/CFS felt due to having an unexplained illness [109
Meaning is established over the phase process through three transformational steps: (1) the allowance of suffering as opposed to its rejection and the subsequent rejection of the suffering self; (2) the development of a compassionate response to the suffering of the rejected, sick, stigmatized self; and (3) the development of respect for their suffering and their ability to live with it and despite it. Creative activity is a successful path leading to the creation of meaning [108
]. So, too, is a sustaining faith on the part of the care provider that the ME/CFS patient can construct an authentic new self.
As ME/CFS patients move through Phase 3, they develop a strongly internalized locus of control and increased tolerance for the uncertainty, ambiguity and chronicity of ME/CFS. They openly express compassion for themselves, and they begin to reconstruct an illness narrative that eliminates the harmful social messages they have endured until now. Their work to achieve meaning involves them in philosophical or spiritual development that offers an ongoing framework for adapting to new experiences, whether good or bad.
3.5.3. Social-Interactive Domain
Despite improvement in the psychological domain in Phase 3, ME/CFS patients may undergo even greater losses than they did in Phase 2 as significant others depart, clinicians give up, and friends disappear. They may continue to experience abandonment, isolation, and stigmatization. Associated with these personal losses are the subsequent losses in romantic partners, friendships, and even close family that deepens the patient’s negative evaluation of their condition. A combination of the uncertainty and ambiguity they encounter [88
] and the losses they experience chip away at the patient until they slip into another form of chronicity in their sorrow [111
]. These losses are cumulative and compounding in nature; each new loss is another weight that produces and maintains grief.
At the same time, as they are able, they continue to pursue new friendships and the support of others with ME/CFS. Some Phase 3 patients can still feel engulfed in stigma, particularly when accompanied with the fear that their condition could be “exposed” to the public, further exacerbating their depressive symptoms and engagement with treatment [31
]. Others may not, but neither group wants to remain silent. They are more willing to speak up against stigmatization and confront it instead of avoiding persons who behave inappropriately toward them. As they work through their existential issues and begin constructing a new authentic self, they begin experimenting with new social roles and sometimes, if able, with new part-time jobs or vocations. Some may engage in social or political activism related to ME/CFS [2
3.6. Elizabeth’s Story: Phase 3
3.6.1. Physical-Behavioral Domain
In Phase 3, Elizabeth experiences periods of stabilized symptoms, sometimes even minor improvement, but she still has relapses. Most of these are simply in the nature of ME/CFS. As Elizabeth comes to comprehend the chronicity, ambiguity, and uncertainty inherent in her condition, she lets go of her search for an elusive cure and works instead to integrate her illness into a new life.
3.6.2. Psychological Domain
Twice in Phase 2, Elizabeth suffered severe relapses brought about, in part, by her repeated attempts to do some of the things she did before her illness. Throughout that time, she wanted to be her former self, and everyone around her wanted her to be that person, too. However, repeated relapses have taught her that she cannot sustain the roles that she had always thought she would fulfill as spouse, parent, worker, or friend, or at least not in the way she used to imagine. Elizabeth comes to understand that her life has changed entirely and forever.
With the help and encouragement of her new ME/CFS friends and the social worker, she explores and expresses the grief she feels for the loss of her old self and she mourns the end of that life.
At this point, all the major existential questions come into play. Elizabeth wonders, “Who am I?” “What good am I?” “Why did this happen to me?” “Why should I live?” “Is there any value to my life?” During this painful period, she struggles to locate a meaning for her existence and her suffering. Elizabeth is very vulnerable. She could be lost because of her considerable social withdrawal. She could fall victim to cynical and predatory providers. She could give way to despair and attempt to kill herself.
However, again, Elizabeth is fortunate. Her new friends and the social worker help Elizabeth navigate the difficult course between necessary grieving for her past self and floundering in grief and reactive depression. She learns not to reject but to allow her new suffering self and to have compassion for herself and her suffering as well. This is not an easy task because Elizabeth is constantly receiving messages from people she knows telling her that if she stays the way she is, if she remains ill, then they no longer want her among them.
To move forward from grief and mourning, Elizabeth tries to discover meaning for what has happened to her and locate a way to live in the future. She begins to engage in philosophical or spiritual thinking in order to come to a new place. Elizabeth starts by learning to respect the person she is now—not the person she might become, but who she is right now.
As is typically the case, Elizabeth does this through a creative act that becomes an act of meaning development. She decides to write a journal describing her experiences. Other people she knows have done things as various as taking up painting, becoming ME/CFS advocates, even conducting online support groups. In composing her journal, Elizabeth re-creates herself—she integrates herself and begins to discover meaning in her experience.
Elizabeth draws heavily on her social worker’s clinical skills, personal support, and encouragement and on a variety of wisdom traditions that seem to speak to her. Elizabeth is not religious in the traditional sense. However, since she has consciously begun thinking about the basic issues of life and meaning, she has discovered aspects of Buddhism and Celtic philosophy that resonate strongly with her personal vision of what is significant in life.
3.6.3. Social-Interactive Domain
The strides Elizabeth makes in her psychological evolution during Phase 3 do not occur in a benignly static social environment. She endures a considerable blow when Jim tells her that he wants a divorce and he has a new relationship. At first, Elizabeth worries terribly about how she will manage the loneliness and the bills. She still has a very limited job at the medical practice and she has always been on Jim’s health plan. As part of the divorce settlement, he agrees to keep her and the children covered. He is also good about having the children visit regularly, which gives Elizabeth needed quiet time and reduces her anxiety that the divorce will cause harmful distance between the children and their father. Elizabeth knows that in this divorce experience, she is much more fortunate than one of her friends with ME/CFS who lost custody of her children and lost her home when she subsequently lost her job.
Encouraged by a ME/CFS friend, Elizabeth explicitly asks Eva and Michael for help at home. To her surprise, Eva responds enthusiastically, especially to cooking. Michael is good about drying dishes and starting a load of dirty clothes in the washer if reminded, but he has recently expressed wanting to live with his dad. Elizabeth, who could not have endured letting him go two years ago, now feels confident about his basic attachment to her and is planning to let him spend his next school year with his father.
At the medical practice, Elizabeth usually feels able to deal with her present limited job requirements. Her coworkers, to the extent they are aware, have gotten used to her condition and have more or less forgotten it. Her confidence was further bolstered when the social worker offered to conduct a workplace consultation for disability accommodation on her behalf. Elizabeth decided that it was not necessary at the present time, but she felt she had someone on her side if she should need it.
Elizabeth knows, however, that her job security depends almost entirely on her supervisor, and she has begun investigating other part-time work she might do from home. The social worker has also reminded Elizabeth that she is eligible for disability, and she has been inquiring among her ME/CFS friends about this as well.
In any social arena now, Elizabeth is less likely to keep silent about her illness. When people react badly or seek to label or stigmatize her, she may confront them about their bias. She has been surprised at how empowered such behavior makes her feel, and she is even thinking about becoming formally involved in advocacy work. The end of her marriage and the inevitable loss of some old friends and acquaintances have forced Elizabeth to consider new roles and to seek new friends. Although this experience has been intensely painful, Elizabeth continues to survive it. She is surprised to find how the process has turned out and how she is adjusting to her new self.
As Elizabeth freely acknowledges, it would have been very hard for her to navigate this passage without the informed help of her care providers—her primary care physician, the specialists, her friends, and the social worker. For example, the social worker suggested a number of books that she thought might help Elizabeth think about the philosophical questions involved and put her in touch with a social work expert in issues of major loss and trauma who helped Elizabeth discover what problems had bedrock significance for her.
3.8. Elizabeth’s Story: Phase 4
3.8.1. Physical-Behavioral Domain
For the most part, Elizabeth experiences continuous plateau, and she enjoys occasional, limited improvement. However, she has also had three relapses—one severe and two lesser ones. Elizabeth now realizes that relapses happen, and she no longer regards them as some failure on her part. However, short of death, which will happen to everyone eventually, she intends to try to reintegrate herself after each relapse experience. Elizabeth comprehends that integration is the “philosophy of life” she should strive to maintain.
3.8.2. Psychological Domain
Elizabeth maintains her new self by consciously recognizing who she is now and by standing with herself. This does not mean that life has become easy. Frequently, Elizabeth cannot climb stairs at all. Sometimes she is so debilitated she must use a wheelchair at home, which she hates. She can still become cognitively confused, especially if she overextends. She still experiences some difficult moments of stigmatization and rejection, and even her own pain. However, she often speaks out against bias and has learned to endure the symptoms of her illness. She has created a new ideal self and takes pleasure in seeing how well she can live up to it.
Elizabeth finds that a constant, active, conscious consideration of meaning and purpose enriches her life and places her experiences, both positive and negative, in a context larger than herself. She still finds great solace in Buddhist conceptions of suffering, but she has also discovered a new trove of wisdom in the material discussed in an online Great Books virtual discussion group that she has joined.
3.8.3. Social-Interactive Domain
Elizabeth continues to nurture the new friendships that she began establishing in Phase 3. She also, through social media, sought out her younger sister, from whom she had been estranged as an adult, and the two have found they enjoy the openness and honesty of their new relationship as much as they like reminiscing about their childhood. Elizabeth’s frankness about her condition and her refusal to accept derogatory estimations make it perfectly clear to people who she is now, and some admire her for it and see the truth of her self-assessment.
Elizabeth has changed her job situation. With her social worker’s assistance, Elizabeth is receiving disability and is being accommodated at her very part time, remote job. Although Jim has remarried—an event that threw Elizabeth into an emotional crisis—they have remained civil, though distant, friends. Relations between the two are better than they have been for many years.
Elizabeth even dares to contemplate entering a meaningful sexual relationship again. One of her ME/CFS friends began online dating recently, which gives her hope, and she has met a man she likes very much in an online writing class. Because of his encouragement, she sent part of her journal to a ME/CFS patient advocacy website.
Elizabeth knows that crises and disasters happen all the time in life. She worries a lot about her children. One of her ME/CFS friends took a terrible turn for the worse and has been completely bedridden for 3 months. This scares Elizabeth terribly, for she knows the same could happen to her. However, Elizabeth is learning to separate those things she can control from those she cannot. Although it is a continuous effort, she endeavors to exert herself for the things she can affect and to endure with grace those she cannot.