Chronic pain is pain that persists for at least six months, even after the injury or illness that caused it has healed or gotten better. However, some people experience chronic pain that lasts for months or years for no apparent reason. This type of pain can also strike with or without related symptoms. Chronic pain may not respond to routine pain control methods, and healing may never occur. What a bleak picture this is.
Caroline, a registered nurse who worked at an acute care hospital, tells her story. “One afternoon as I was helping a patient transfer back into her bed, I tore my rotator cuff.” She filled out the requisite incident report and completed the worker’s compensation processes. She underwent surgery to repair the damage. But after following all rehabilitation protocols, Caroline’s pain remained. “Six months after the operation, I learned there had been a surgical error in the initial repair and I needed a second procedure,” she says. But even after returning to rehab after the follow-up procedure, the majority of the pain remained. “I kept hoping that it eventually would go away, but it lives with me,” Carolyn laments. “I now am medicated daily on opioids, anti-inflammatories, and am disabled from my work as a nurse. I do the best I can, but find that my quality of life is significantly compromised.”
Caroline discusses her pain levels using the well-known 10-point scale with her treatment team (“On a scale from one to 10, how much pain do you feel today?”). But describing the limits to her quality of life and day-to-day activity is more complicated. Because of the complexities, she was referred for psychotherapy to help clarify these concerns and to provide instrumental aid that would enhance her daily living skills. She told her psychologist, “I’m just completely demoralized. I’ve lost my courage to meet the demands of the day. I feel pain with everything that I do. I get tired of complaining and know that my friends and family are weary of hearing me. The medication makes me feel blurry, and I pay a high price any time I try to do more than I can.”
What is quality of life?
Isn’t this an odd question? For most, its answer comes in the form of “I don’t know how to describe it, but I know it when I see it.” Fortunately, social scientists are more exacting and define quality of life for individuals as a general sense of well-being and the feeling of being in charge of oneself in a variety of contexts. Simply put, it is life satisfaction and includes everything from physical health to contentment with family, education, employment, wealth, religious beliefs, and the environment. According to the World Health Organization’s definition, quality of life is “the individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals.”
When there’s no going back
At 44 years old, David was an avid bicycler until he was hit one morning by an automobile during his daily ride. His pelvis and several disks in his lower back were shattered. “I’m just not as happy as I used to be,” he says. Discussing the accident and its impact, he says, “I thought I would just bounce back. I knew how serious my injuries were and was willing to do whatever it took to recover. But after months of rehabilitation, my treatment team told me that I would be discharged and should get on with my life. When I asked more about the discharge and told them that I was unhappy that they were going to release me, my physician said, ‘What did you expect?’”
“‘A cure,’ I said. ‘I’m expecting to be able to get back on my bike and ride away like nothing happened.’”
David’s physician replied, “That isn’t something that we ever hoped to achieve. You have done extremely well because you were in such good shape to start with. The accident has all sorts of long-term implications.”
“I now have terrible sciatica, walk with a cane, and have dreadful balance,” David says. “Needless to say, I have ended my biking career, can’t do much of any exercise, and have extremely limited stamina. I never expected to be a middle-aged guy living as an old man. I’m struggling to make sense out of what happened with the ramifications of the pain I live with. I don’t want to be satisfied with this. This isn’t a way that I know myself.” As David and Caroline illustrate, quality of life is found in those personal aspects that give our ordinary day meaning and value.
Managing chronic pain significantly compromises a person’s quality of life. Living with pain can be contextually defined by four life factors:
– the symptoms of the illness/disease/injury, and the side effects and lasting impact of treatment;
– the individual’s functional ability to perform basic activities of daily living;
– the person’s experiences of happiness, pleasure, pain and suffering; and
– the individual’s independence, privacy and dignity.
Understanding quality of life while living with the complexities caused by pain is best accomplished within the frame of well-being. Again, giving words to the qualitative social science definition, Caroline says, “I really define my day by the degree that I can enjoy the important possibilities in my life.” The full definition of quality of life requires consideration of four fundamental domains of well-being: physical, psychological, social, and spiritual.
Foremost, pain impacts a person’s functional ability to manage routine activities. As Caroline says, “I have to sleep more than I ever thought that I would. I don’t rest particularly well at night, and the pain meds make me groggy during the day.” David says, “Before the accident, I was strong and physically fit. Now, I’m not. I never thought about my physical health as far as it limiting me from doing what I wanted to enjoy the day. I have to plan carefully. I work with a trainer who knows my limits. I still cannot believe how compromised my strength is. The trainer has to work with me just to maintain what capacity I have left. I’m struggling to adjust my thinking to this new way of life, but I don’t like it.”
Caroline discusses the impact of the pain medicines on her physical health. “Our country is in an opioid crisis, and there are times, even as a nurse, that I’m treated like an addict. I am drug tested in the doctor’s office, have to take new prescriptions each month to the pharmacy, and others’ oversight suggests I don’t know how to manage myself. Nothing would please me more than to find something other than opioids to help me manage the pain. Even with meticulous attention, there are times that I have breakthrough pain. I haven’t even talked about other GI [gastrointestinal] side effects. My appetite has changed and the medicines make me nauseated and constipated at the same time. None of this helps me to have a good day.”
Learning from physical pain
The World Congress on Psychosomatic Medicine’s 2015 conference in Glasgow, Scotland, recently issued its results of the conglomerate of research on physical pain. They found that chronic pain promotes negative beliefs a person holds about him- or herself and the future and disrupts focus from purposeful behavior and goals. Four recommendations were proffered for the psychological treatment of chronic physical pain.
1. Reduce catastrophic thinking and interpretation of pain.
2. Increase tolerance by promoting acceptance, e.g., “This is what I have to deal with. I don’t have to like it, but I do have to live with it.”
3. Cultivate positive expectations by setting realistic and achievable goals.
4. Remain flexible in movements and attitudes. As one woman said about her day-to-day experience, “I just put one foot in front of the other. As long as I can say that I do this and remain vertical, I’m as OK as I’ll ever be.”
Many of those who live with chronic pain discuss the shift in roles and relationships. Caroline says, “I need others to drive for me, since I can’t trust myself behind the wheel. I don’t like feeling dependent on others, but now that’s a fact of life. I feel like a burden more times than I wish.”
David is even more explicit with his concerns. “My sex life has changed, and not for the better. My wife and I have had to learn what I can and can’t do. Our spontaneity is gone, and I don’t like the way I look when I am not wearing clothes. Fortunately, we are still affectionate with each other, but there are times when I hurt more; I feel like a porcupine with his quills out. That doesn’t bode well for romance.”
Caroline and David are like many individuals who live with chronic pain. “It is like wearing a new pair of glasses. I see the world through the lens of pain,” David says. Many report increased anxiety and depression. “I’m just not as happy as I used to be,” Caroline says. “I can tell I get distressed and tense when my medications are at their limit. I hate paying attention to my shoulder as much as I do. Before the problem, I would sit down and enjoy the leisure time I gave myself. Now, I sit down and have to work to calm myself.”
Living with chronic pain brings new meaning to the word “suffering.” Caroline says, “I don’t like to live in the presence of a feeling so unpleasant, which is how I understand suffering.” According to David, “Before my accident, I didn’t appreciate how suffering could adversely impact someone. I thought, ‘Just buck up…tough it out.’ I know better now.” Many individuals talk about the uncertainty of living with chronic pain. One woman described her experience as “waiting for the other shoe to drop. I know when it comes, it won’t be in my favor. I’m no longer as optimistic as I used to be. I was a glass-half-full kind of person. Now, I’m not, and I don’t like that about myself.”
Demoralization, depression, and pain
Caroline talks about the demoralization she feels as a result of her pain. As early as 1961, psychologist Jerome Frank described this problem as “the state of mind of a person deprived of spirit or courage, disheartened, bewildered, and thrown into disorder or confusion.” Demoralization is different from depression. Those who are depressed lose motivation and a sense of direction. As one fellow said, “I was depressed when I knew what I needed to do to get out of the mess I found myself, but I didn’t have the willpower to get up and do it.” Those who are more demoralized by pain are more than willing to get out of their predicament, but don’t have a road map to overcome the associated stress. People who are depressed by pain are numb, while those who are demoralized can brighten up when situations change, encouragement is received, or self-control is regained.
How hope helps
Living with pain requires a shift of thinking to understand the new experiences of body, mind, and spirit. Chronic pain commonly engenders a sense of isolation and feelings of incompetence, helplessness, and hopelessness. Fortunately, multiple strategies can help a person regain as full a quality of life as is possible.
A person will want to be fully educated about the nature of his or her pain in order to formulate realistic treatment expectations. Researchers have learned that many patients develop a “pain trap” in which they overestimate the difficulty the pain will cause, leading to more of a heightened sense of threat than is necessary. Better education, paired with progressive muscle relaxation and diaphragmatic breathing, lowers the fight-or-flight response and allows for more wiggle room to accurately plan for managing the pain.
Physical exercise, to the degree that it can be tolerated, is helpful. An individual living with chronic pain will feel more in charge as he or she exercises the body. Gentle exercise, such as t’ai chi, yoga, dance, or water walking, activates the sense of mastery within existing physical limits.
Mindfulness strategies, which can be learned and practiced with a psychotherapist, help facilitate improvement in social skills by enhancing acceptance, positive affect, pain coping, cognitive flexibility, and resilience.
Finally, attributing meaning to the experience of pain and its impact on daily living allows a person to rewrite the narrative of his or her life. Chronic pain can dramatically change the way an individual sees him- or herself. Finding ways to describe and live with the pain and its associated distress provides an avenue for growth, despite the adversity caused by the pain.
The overarching goal of any strategy is to understand that while pain distress is normal and expected, the sense of incompetence, the perceived inability to overcome the stressful situation, and the feelings of helplessness and hopelessness can be countered by acquiring methods and tools that facilitate a sense of mastery.