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Living with a Chronic Disease
Mark L. Goldstein
Chicago School of Professional Psychology
People diagnosed with chronic diseases must adjust to the demands of the illness itself, as well as to the treatments for their condition. The illness may affect a person’s mobility and inde- pendence, and change the way a person lives, sees him or herself, and/or relates to others (The Cleveland Clinic, 2003). There are dra- matic reductions in physical, psychological, and social well-being.
A certain amount of sadness is normal, but in some instances, a chronic disease may actually cause depression, anxiety, anger, sleep disorders, and/or substance abuse.
Chronic illnesses have been found to be consistently associated with an increased prevalence of depressive symptoms and disor- ders (Anderson, et al., 2001). In some cases, depression appears to result from specific biologic effects of the chronic medical illness, particularly in Parkinson’s disease, multiple sclerosis, and cere- brovascular disease. In other cases, the association between depres- sion and chronic disease appears to be mediated by behavioral mechanisms, in that the limitations on activity imposed by the illness lead to gradual withdrawal from formerly enjoyable activi- ties (Prince, et al., 1998).
Depression also increases the overall burden of illness in patients with chronic illness. For example, a study by Unutzer, et al. (2002) revealed an association between depression and mortality resulting from cardiovascular disease. Other studies have shown that depression is associated with a poorer prognosis and more rapid progression of chronic illnesses, including diabetes (deGroot, et al., 2001) and ischemic heart disease (Glassman, et al., 1998).
Anderson, et al. (2001) studied patients with both Type 1 and Type 2 diabetes from 39 studies and concluded that diabetes doubled the odds of developing depression. The odds of depres- sion were significantly higher in women than in men, a pattern that mirrors the female preponderance of depression in epidemiologi- cal studies of the general population.
According to the Cleveland Clinic (2003), the risk of getting depression in the general population is 10–25% for women and 5–12% for men, but it is much higher for those with chronic dis- eases—25–33%. For example, the rate of depression for those with Parkinson’s disease and multiple sclerosis is 40%. The rate of depression is even higher for those with coronary heart disease, who have suffered a heart attack; 40–65% of these individuals will develop depression. For those who suffer a stroke, 10–27% will develop depression. Sullivan (1992) found that patients with chronic low back pain had a prevalence of major depression three to four times greater than the normal population.
More significantly, psychosocial factors, particularly depres- sion, appear to impact the development and progression of such chronic diseases as coronary heart disease and HIV/AIDS (Schneiderman, et al., 2001). All too often, patients and family members overlook the symptoms of depression, assuming that feeling depressed is normal for someone dealing with a serious, chronic disease. Furthermore, symptoms of depression are also fre- quently masked by other medical conditions, resulting in treatment for the symptoms, but not the underlying cause of the depression.
Some chronic illnesses, for example, multiple sclerosis, have both a biological and an environmental component to the depression, further complicating diagnosis and treatment.
Common symptoms of depression include depressed mood, loss of interest or pleasure in daily activities, significant weight loss
or gain, sleep disturbances, problems with concentration and/or memory, apathy, lack of energy or fatigue, feelings of worthless- ness or guilt, and recurrent thoughts of death or suicide.
Suicidal ideation among individuals suffering from chronic ill- nesses has not been widely studied, although rates of completed suicide are believed to be elevated in this population relative to the general population (Fisher, et al., 2001). The literature on suicide suggests that chronic pain patients are at greater risk for depres- sion than the general population. Fishbain (1991) reviewed 18 studies relating to the association of chronic pain and suicide.
These studies indicated that suicide ideation, suicide attempts and suicide completion are commonly found in individuals with chronic pain. In addition, a number of controlled studies and suicide completion rate studies indicated that chronic pain might be a suicide risk factor. Furthermore, a review of central pain patients by Gonzales (1995) revealed that the risk of suicide is sig- nificant in patients with poorly controlled pain. Penttinen (1995) uncovered a relationship between back pain and suicide among Finnish farmers, while Fishbain, et al. (1991) studied patients in a pain center and found that the completed suicide rate for chronic pain patients was significantly higher than that of the general population.
Smith, et al. (2004) studied the role of sleep onset insomnia and pain intensity in individuals with chronic musculoskeletal pain, and the evidence of suicidal ideation in these individuals. They dis- covered that chronic pain patients with self-reported insomnia with concomitant high pain intensity were more likely to report passive suicidal ideation, independent from the effects of depression sever- ity. In another study, Stenager, et al. (1994) found that among suicide attempters, 52% suffered from a disease and 21% were on daily analgesics for pain.
DeLeo and Spanthonis (2003) reviewed epidemiological studies of suicide in the elderly. Their review revealed that assisted suicide and euthanasia in the elderly have been associated with the desire to escape chronic physical pain and suffering caused by illness, and to relieve mental anguish and feelings of hopelessness and depression. Roscoe, et al. (2003) found that poorly controlled pain was a factor in seeking assistance in dying. In this study, Dr.
Jack Kavorkian’s patients were studied and the most common
diagnoses were amyotrophic lateral sclerosis or multiple sclerosis, inadequately controlled pain, and a recent decline in health. Magni, et al. (1998) found that rates for thoughts about death, wishing to die, suicidal ideation, and suicide attempts were two to three times more frequent in those with chronic pain compared with those without chronic pain. Furthermore, oncology patients with con- comitant pain and depression were significantly more likely to request assistance in committing suicide as well as actively taking steps to end their own lives (Emanuel, et al., 1996).
Although depression is the most commonly reported psycho- logical symptom by patients with chronic diseases, many patients also report anxiety symptoms as well. Reich, et al. (1983) evaluated several studies of patients from pain clinics and found that depression and anxiety were common. Linton and Gotestam (1985) studied the relationship between pain, anxiety, mood, and muscle tension in chronic pain patients and found that psychological vari- ables were related to the experience of chronic pain, but that there was a high degree of variability among individuals. In another study, Hadjistavropoulos, et al. (2002) evaluated 65 patients with chronic pain and the role of anxiety in pain. They found that health anxiety played a role in pain behavior.
Although patients with chronic illnesses may complain about depression and anxiety, they may also exhibit signs of increased irritability, lower frustration tolerance and bouts of anger. This may be the result of sleep disturbance and/or a component of depression. Individuals with chronic illnesses, particularly those with pain conditions, often have sleep disorders. For example, fibromyalgia sufferers were found to have abnormalities on sleep studies and were reported to be deficient in deep, non-dream sleep.
In addition, they were also found to have an unusual persistence of alpha activity during sleep.
Difficulty with sleep can complicate matters for the chronically ill, in that it impairs their social, educational, and occupational functioning and make them vulnerable to accidents and suscepti- ble to other health problems. Sleep disorder also impair the person’s ability to cope with the stress that the chronic condition causes.
There is also an increased risk of substance abuse, whether alcohol, illegal drugs and/or prescribed medications in people
with chronic diseases. At times, self-medication may be a means of coping with pain and/or depression. In other instances, the use of alcohol or drugs may assist a person in getting to sleep, although alcohol and many drugs, including marijuana, in fact, interfere with adequate sleep and interfere with the REM sleep in particular.
Traditionally, individuals with chronic illnesses have been treated with medication, notably anxiolytics for the anxiety and stress and antidepressants for depression. Furthermore, the anal- gesic properties of antidepressants have been well established.
Tricyclic antidepressants have been commonly prescribed for the treatment of many chronic pain syndromes, especially neuropathic pain. Current research suggests that the analgesic effect of antide- pressants is mediated by the blockade of reuptake of Serotonin and Norepinephrine. The resulting increase of the levels of these neurotransmitters enhances the activation of descending inhibitory neurons (King, 1981). Tricyclic antidepressants have been the most effective in relieving neuropathic pain (Gruber, et al., 1996).
The efficacy of serotonin reuptake inhibitors has been variable and inconsistent. For example, Paroxetine (Paxil) was not found to be beneficial in a study of patients with diabetic neuropathy (Sindrup et al., 1990). Yet, Floxetine (Prosac) was found to be equal to Amitriptyline (Elavil) in significantly reducing the pain in patients with rheumatoid arthritis (Rani, et al., 1996).
Venlafaxine (Effexor), Nefazodine (Serzone), Mirtazapine (Remeron) and other antidepressants have also been studied with variable results.
In addition, psychotherapy has been utilized as an adjunctive treatment approach with chronically ill patients. Although indi- vidual counseling has been widely used for many years, there has been an increase in family involvement and family therapy in recent years in the treatment of patients with chronic diseases. The role of the family in the development and perpetuation of chronic pain conditions has drawn considerable empirical attention (Kerns and Otis, 2003). Although family systems and family stress theo- ries have been the major models in the family therapy literature, these perspectives have had a limited impact on advancing an understanding of family relationships in the context of chronic illness.
Moore and Chaney (1985) were the first to report on the effi- cacy of a treatment approach utilizing the spouse of the person experiencing pain. In their study, they compared a patient only group with a couples group. Both groups received education, problem solving skills training, relaxation training, and assertive- ness training. Both treatment groups improved significantly, in comparison to a control group. Other more recent studies testing the efficacy of cognitive-behavioral, operant conditioning, and coping skills training with arthritic, myofacial, and other chronic pain conditions were effective. However, adding couples, family or spouse involvement did not improve outcome.
Saarijar, et al. (1991) published a series of papers on couples treatment for chronic pain disorders from a family systems per- spective. However, no significant differences were found between the experimental and control groups on measures of pain and pain- related disability.
There has also been an effort to develop a cognitive-behavioral transactional model of family functioning that attempts to integrate aspects of family stress theory and the behavioral perspective on chronic pain (Kerns, et al., 2003). In a more recent article, Kerns and Otis (2004) have further delineated their ideas for the utilization of an integrated family systems model with chronic pain patients.
Case Studies
Cases studies help to illustrate some of the coping mechanisms of persons with chronic diseases. The following two case studies also clarify some of the social, family, and occupational impair- ments of persons with chronic diseases.
Case 1
Rita is a 51-year-old Caucasian female, married with two chil- dren. She had worked as a high school teacher prior to having chil- dren and then worked as a substitute teacher for a number of years after her children were attending school full time. Approximately seven years ago, she was diagnosed with multiple sclerosis (MS), initially presenting with visual problems, including double vision,
and muscle weakness. She also experienced muscle twitching and tingling at times. Rita was diagnosed and treated by a neurologist who specialized in patients with MS. She would have periodic exacerbations, which were initially responsive to medication. On two occasions, Rita was hospitalized briefly. As the disease pro- gressed, she stopped working and began to do less around the home, including shopping and cooking. Rita also began to do less with her children, both of whom were still home and in school.
Prior to the illness, Rita had been very involved with her family, particularly her children, serving as room parent for each for a number of years, serving as a Parent/Teacher Organization officer on several occasions and coaching her children’s athletic teams.
Her neurologist, due to concerns about depression, referred her to a psychiatrist three years ago. Rita complained about fatigue, often slept 12–14 hours per day, had constant somatic complaints including lower back pain, withdrew from friends and family and experienced anhedonia. Prior to the referral to the psychiatrist, she had been taking steroids for exacerbations and Cylert for fatigue.
Her psychiatrist initially prescribed Prozac, and subsequently pre- scribed Serzone, Welbutrin, Zoloft, and Paxil. Rita was also referred to a clinical psychologist for counseling.
Despite medication and counseling, her depression continued.
In counseling, Rita complained about weight gain (a common side effect from steroid therapy), feeling useless and chronic pain. She also became increasingly angry—with her family and physicians.
Her neurologist prescribed pain medication and she became increasingly dependent on pain medication. Over the next year, Rita began to get various physicians (internist, neurologist, rheumatologist) to prescribe pain medication, leading to abuse of medication. She ultimately had a psychotic episode induced from medication overdose and was hospitalized and detoxed. Rita’s husband withdrew from her, while her two children took over many of the household chores and catered to her. Eventually, the entire family became involved in family therapy and each of the family members also had individual counseling to help with coping. At the present time, counseling continues. Medication is now prescribed by only one physician, and all treatment providers have monthly phone contact. Rita’s depression remains, but has lessened. Her chronic pain has also lessened, but flares up at times.
Case 2
Frank is a 49-year-old Caucasian male, married with one adult child. After completing high school, he worked as an apprentice electrician before becoming a union electrician. Three years ago, Frank was injured at work when he fell off a ladder and his leg landed on a “horse.” He subsequently developed Complex Regional Pain Syndrome-I (CRPS-I) (formerly known as Reflex Sympathetic Dystrophy or RSD), resulting in chronic pain in one foot and leg. Frank saw a specialist at a teaching hospital and was ultimately hospitalized and given intravenous antibiotic therapy, but without success. Another specialist suggested implanting an electrical stimulation block, which he declined. Prior to the acci- dent, Frank could best be described as a workaholic, typically working 50–55 hours per week and never missing a day due to illness.
As the pain continued, Frank began to compensate when he walked, ultimately resulting in the necessity of back surgery. He became increasingly angry, often yelling at his wife and son. In addition, Frank became significantly depressed and frustrated. He consulted with a number of surgeons, seeking to have his leg and foot amputated. No physician would perform such an operation, resulting in an exacerbation of his depression and anger. His primary care physician referred him to a psychiatrist, but he dis- liked the way the medication made him feel and he discontinued antidepressant medication as a result. Finally, his physician referred him to a clinical psychologist for counseling. The focus of therapy was primarily on pain management and coping strategies, and secondarily, on support. Early in treatment, Frank’s wife called and said that Frank had a shotgun in his mouth and was threat- ening suicide. Frank refused to admit himself to a psychiatric hos- pital, but agreed to go to a rehabilitation hospital, where he learned biofeedback and self-hypnosis. Although he continues to be in chronic pain, he is no longer suicidal. Furthermore, Frank volun- teers in his community for several organizations, giving him a new purpose in his life. His anger continues, but to a far lesser degree.
In counseling, he has focused on anger management, which has significantly helped control his anger.
