Psychosocial Aspects of the Rheumatic Diseases
Sharon Danoff-Burg
Tracey A. Revenson
This chapter addresses psychological and social issues that many patients face in the course of living with rheumatic diseases. Most patients are mentally healthy at the time their illness is diagnosed, but they may experience psychological distress throughout the course of their illness. At the same time, many patients report finding benefits in their illness, including an increased sense of spirituality and purpose of life, awareness of deepened interpersonal relationships, and an overall increased appreciation for life.
Living with rheumatic disease involves facing a number of psychosocial stresses and challenges. Depending on the type and severity of the illness, persons with rheumatic disease may need to cope on a daily basis with pain, stiffness, fatigue, and physical activity restrictions, as well as issues related to identity, body image, and even mortality. Many of these adaptive challenges require help from others. Therefore, patients with rheumatic disease need an available and satisfying network of interpersonal relations which they can count on, for both emotional sustenance and more practical help during periods of pain and disability.
Although, from a medical point of view, the rheumatic diseases may differ in regard to presentation and treatment, they have a number of psychosocial coping tasks in common. These include the following:
Pain.
Disability and loss of role functioning (as well as anxiety over anticipated losses).
Increased risk for depression.
Ongoing and often frustrating interactions with the health care system.
The need to adhere to a prescribed and often changing treatment regimen.
Changes in lifestyle and in appearance.
Changes in interpersonal relationships.
The need to tolerate uncertainty.
In some, the possibility of death.
As symptoms, disease course, and prognosis are unpredictable and may change over time, the salience of these coping tasks changes as well. However, the need to tolerate uncertainty is an ever-present issue, one that can be both frustrating and frightening.
PSYCHOSOCIAL EFFECTS OF RHEUMATIC DISEASEI. DEPRESSION
Most individuals with rheumatic disease do not experience clinical depression, although a significant minority do. At the same time, individuals with rheumatic disease are more likely to experience depression than are individuals without any serious chronic illnesses. If depression does occur, it can increase the pain and disability associated with rheumatic disease.
Patients with depression may feel unsupported by others. In some cases, this perceived lack of support reflects reality, as many individuals find it difficult to spend time with someone who is depressed.
Although depression is often linked to pain, the loss of the ability to perform valued roles and activities (because of pain, inflammation, fatigue, or disability) is a greater risk factor for developing depressive symptoms. Patients’ interpretations of the meaning of their limitations and role changes may be more salient than their actual disease status.
Women with rheumatic disease are at greater risk for depression than are men. Within the US population, a clinical diagnosis of depression reveals a prevalence that is about twice as much among women than among men. Health practitioners need to be especially alert for depression in women so that both the depression and the rheumatic disease are treated.
If depression is overlooked, declines in functioning caused by depression can be attributed mistakenly to the rheumatic disease and result in overtreatment or unwarranted changes in the medical regimen. Complicating the clinical picture, some medications such as steroids may trigger or worsen depression.
It is important that health care professionals monitor their patients for depressive symptoms and, when necessary, ensure that they receive appropriate mental health treatment, rather than assume that depression is a “normal” and anticipated part of rheumatic disease.
II. LIFESTYLE CHANGES
Living with a rheumatic disease not only magnifies the stresses of everyday life but also creates additional ones. Most lifestyle changes are a direct or indirect result of frequent episodes of pain and disability. Most patients report a decrease in social, recreational, and leisure activities at one time or another. Some of these changes have great psychological significance for the patient, but may seem trivial to others. These include problems of engaging in activities that previously might have been taken for granted and as easily performable, such as household chores or getting around one’s community easily. These “smaller” problems should not be dismissed offhand, as they accumulate over time and may lead to psychological distress.
Changes in paid and unpaid work. Rheumatoid arthritis (RA) has a profound effect on employment status, with many individuals unable to maintain their jobs as the disability worsens. This may exacerbate financial concerns. “Forced” retirement, medical leave, or the need to change careers in midlife because of physical limitations can increase psychological distress.
Rheumatic disease may interfere with the ability to perform valued activities at home, such as taking care of children. Particularly for women, loss of the caregiver role may lead to a decline in feelings of self-worth. Patients should be reassured that decreases in activity levels are normal, as is frustration with these changes. Patients should be encouraged to find new ways to perform tasks (perhaps with the aid of assistive devices), explore new leisure activities, and redefine roles at home and work.
Changes in marital and intimate relationships. Communication, day-to-day life, and sexual satisfaction seem to be the areas of intimate relationships that are most disrupted by rheumatic disease. The degree of disability is a major determinant of the extent to which relationships are affected. Partners may feel frustrated about a reduction in shared pleasurable activities, helpless in response to seeing their partner in pain, or fearful regarding the future of the relationship.
Contrary to common belief, positive effects of the illness on interpersonal relationships are as likely to be experienced as negative ones, although they are seldom reported to physicians. Commonly perceived benefits include an appreciation of support received from loved ones and increased empathy or compassion.
Sexuality. Persons with rheumatic diseases may be vulnerable to sexual problems because of illness symptoms, side effects of some medications, or emotional distress. However, studies comparing patients with rheumatic disease to healthy persons have found no differences in sexual satisfaction. Patients do report declines in sexual satisfaction with time, but this may be a consequence of aging as much as of pain. Sexual dissatisfaction is greater for those with more severe disease or greater functional disability. In one study, some spouses reported not having sex for fear that they would hurt their partners. However, another study found that some women perceived that their illness resulted in positive effects on their sexuality.
Although avoidance of sex because of embarrassment about joint deformities or steroid-induced changes in appearance has been emphasized in the clinical literature, another reason for reduced interest in sex may be exhaustion or anger created by role changes or added household demands resulting from the illness. This can be addressed by fostering communication between partners.
Social life. Relations with friends are at greater risk of being lost than those with the family. Reduced mobility and increased pain make social relations outside the home difficult to maintain; more than half of the patients with RA report that they visit other people less often because of their disease. In some cases, social isolation may arise because the patient seeks to avoid the stigma and embarrassment associated with the condition.
Changes in the quantity and quality of close relationships are common. In the years following diagnosis or with initiation of a new treatment, family and friends may be quite helpful. With the passage of time, however, friends and family may tire of providing help, and patients may interpret this as withdrawal from them or as criticism of how they are coping with the disease. This may occur at a time when patients are becoming less able to care for themselves and actually need more help.
Effect on family members. Spouses or live-in partners play a dual and sometimes conflicting role: They serve as the primary provider of support to the patient but, at the same time, they experience stress because of the illness. Partners often experience anxiety, communication difficulties, and problems at work, but they typically do not manifest clinical levels of psychopathology. Spouses report the greatest illness intrusion in the areas of social and leisure activities, family activities, and sex.
Frequent episodes of pain, increasing disability, an unpredictable course of the illness, and financial pressures brought on by the illness may add up to affect the partner’s ability to be supportive over the long haul. The societal pressures embodied in marriage vows (“In sickness and in health “till death do us part”) may create feelings of resentment, anger, and guilt. If the patient is depressed, it can be difficult to empathize or help. With advancing age, many spouses have health problems themselves, which can make tending to the patient’s physical and emotional needs more difficult.
Having a child with juvenile idiopathic arthritis (JIA) creates many new stressors and coping tasks, similar to those experienced by adults but handled differently in terms of the child’s cognitive abilities and life context (e.g., school, team sports, and dating). Nonadherence to treatment can create family conflict, and healthy siblings may vie for attention. Many families, however, report being pulled closer together in coping with the illness.
III. FACTORS PROMOTING PSYCHOLOGICAL ADAPTATION TO RHEUMATIC DISEASE
A sense of personal control over the illness. The extent to which patients maintain a sense of control over their illness appears to have a significant impact on their adjustment. Perception of personal control over treatment is related to a
positive mood, and perceived control over pain is related to reports of less pain. Similarly, perceived helplessness has been linked with pain, disability, and early mortality in patients with RA.
Coping. Coping efforts can be directed toward dealing with the stressful situation itself, managing psychological distress aroused by the situation, or maintaining interpersonal relationships. Most stressful situations evoke all three modes of coping. At the time of diagnosis, patients may need to minimize the seriousness of their situation, lest they be overwhelmed by emotions and are not able to act. Over a period, the patient is able to acknowledge emotions and deal with the situation more actively, such as by seeking the relevant information before accepting a treatment decision. However, some patients may try to “normalize” or pass as healthy, by performing activities that are not advisable.
The effectiveness of coping depends on many factors (see the subsequent text), and coping efforts should not be judged a priori as adaptive or maladaptive.
Effectiveness of coping. The coping strategies of actively seeking information about the illness, seeking support from others, and trying to view one’s situation in a more positive light have been associated with better psychological functioning. Coping strategies that involve wishful thinking, fantasizing, self-blame, avoidance, and denial are associated with poorer psychological functioning. However, reports of emotion-focused coping strategies such as self-blame may reflect levels of psychological distress rather than actual coping efforts.
How effective a particular coping strategy is depends on many factors, including aspects of the patient’s life context (e.g., age, interpersonal relationships, and financial stressors) as well as the medical condition. The degree of personal control that patients believe they have over their illness and treatment, and whether they believe their coping efforts will be effective, have been shown to influence psychological outcomes.Related posts:
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