Chronic Pain: The Social Impact

Chronic Pain: Impact on the Family and Social Relationships

By Robert Edwards, Ph.D.

January 8, 2009: While pain is an intensely private experience, the onset of a chronic pain condition can impact a large number of individuals. Many chronic pain sufferers, whether migraines, back pain, arthritis pain, etc., find that pain’s effects on their social and family lives are among the most distressing and frustrating consequences of their illness. Sufferers may come to feel helpless, lonely, isolated, and abandoned.

Consider the case of “Paul” a 44 year-old man who has worked for a construction company for the past 20 years. He is married, and he and his wife “Lisa” have 3 children, ages 3, 4, and 7. Lisa works in food services at a local school. Following an incident at work in which he fell 15 feet off of a garage roof, Paul has had persistent lower back pain. Two surgeries over the past 12 months have failed to alleviate his pain. The following sections illustrate the impact of this condition on the lives of Paul and his family.

Financial Strain: Some have referred to the economic consequences of chronic pain as “Downward Mobility.” In many cases, an individual is physically unable to perform the job(s) to which he or she has become accustomed. Since persistent pain is not necessarily accompanied by clear-cut physical pathology, it may take a long time to establish a diagnosis and treatment plan, and to qualify for a disability program. In the meantime, the family generally experiences a loss of wages combined with sharp increases in medical bills. Even after a disability is established (which may take years), only a percentage of an individual’s former earnings are paid (60% is typical for many long-term disability plans). Money is one of the main causes of disagreement and discord among married couples; unexpected financial burdens such as those imposed by chronic, disabling pain can strain even the strongest relationships.

While Paul is out of work, Lisa has had to take a second job, working evenings and weekends as an assistant to her sister, a Real Estate broker. To save money, Paul and Lisa have had to take their youngest children out of the preschool programs they were in, and Paul now takes care of them during the day. He is happy to be able to spend more time with his children, but he often finds himself in situations that exacerbate his back pain (e.g., picking up his daughter who has fallen down and scraped her knee), and both he and Lisa are exhausted at the end of the day. In addition, they have cancelled all of their upcoming family vacation plans, their occasional “date nights”, and many other family-related expenses that they no longer feel able to afford. They are no longer contributing to their retirement accounts, they have used up all of their available savings, and they are considering borrowing against their home to pay their monthly bills.

Social isolation: Many individuals living with chronic pain find that the social support networks that they have established over the years become strained or eroded after years of being in pain. Because of the unpredictable nature of many pain conditions, sufferers often find that they have difficulty planning social activities, and that they have to cancel activities with frustrating frequency. In addition, the invisibility of pain can make it difficult for friends and family to identify when a loved one is in pain, and can make it challenging for pain sufferers to ask for help.

Previously, Paul had a close circle of friends with whom he played softball or went out for drinks every week or two. Because of financial difficulties, the fact that Lisa often has to work late, and his physical inability to participate in sports, Paul has not seen most of his friends for months. He remains close to several family members (his parents and a brother live nearby), but they are concerned by Paul’s escalating use of pain medications (he takes morphine regularly, and uses Percocet for breakthrough pain), and have told him so, which has caused significant tension in their relationships. Lisa’s mother lives nearby, but she finds that her relationships with her daughter and son-in-law are strained. In particular, she is worried about Lisa’s health (she is exhausted from working 2 jobs to support a family) and, given that X-rays and MRIs have not identified any physical cause for Paul’s ongoing pain (i.e., no herniated discs, etc), she has expressed concern that Paul might be exaggerating his symptoms to avoid going back to work.

Loss of Identity: A common issue resulting from chronic pain is the inability to maintain identity roles in relation to family members. Loss of feelings of masculinity or femininity is common, but may be difficult to talk about with family members or healthcare professionals. Difficulties with physical intimacy, and problems adjusting to the loss of independence, and the consequent dependence on others, are particularly pervasive. Sexual dysfunction is common in patients with chronic pain, for a variety of reasons ranging from treatment-related side effects to fatigue to fear of pain during sexual activity. A perceived inability to fulfill family roles such as provider, parent, caretaker, etc. can contribute to the high rates of depression observed among sufferers of persistent pain. Collectively, over half of patients with chronic pain report clinically significant levels of depression, including low energy, insomnia, irritability, feelings of guilt, and suicidal thoughts. Such symptoms of depression can form part of a vicious cycle, making participation in positive family activities more difficult, which then further exacerbates depression and frustration, etc.

Paul had thought of himself as the “breadwinner” and “provider” for the family. It has been a major adjustment to depend on Lisa to earn money for the family, and to do the physical household tasks that he considered part of his role in the family (cleaning out the gutters, etc.). Paul had always considered himself a good athlete, and a reasonably attractive man, but he has not been able to exercise or participate in sports since his pain began, and he gained over 30 pounds due to physical inactivity. Because he wakes up so frequently at night, he and Lisa have begun sleeping in separate rooms, and their sex life has suffered significantly. Paul has also encountered new challenges in his relationship with his children. His 7 year-old son no longer asks him to play catch, and Paul found his eyes tearing up when he overheard their daughter asking Lisa “why doesn’t daddy play with us anymore?” He has begun to wonder whether he is a burden to his wife and children, and has seriously questioned whether they would be better off without him. Recently, one night when Lisa was working, he read through his life insurance policy to determine whether benefits would be paid in the event of a suicide.

Relationships with Healthcare Providers: Though the significance of these relationships generally pales in comparison to shifts in family interactions, many individuals with chronic pain do report what they perceive as a frustrating lack of understanding on the part of their medical care providers.

After his surgeries, Paul had the distinct impression that the surgeon seemed irritated and frustrated by the fact that his pain had not improved. Later, reading through a copy of his medical record, he was surprised to see that his primary care physician had written “patient’s report of severe pain not consistent with physical pathology. Psychological factors may be playing a role in his presentation.” Offended and angry, he is considering looking for a new physician, but is worried about finding someone who will feel comfortable prescribing the pain medication he is taking.

PAUL AND HIS FAMILY, TWO YEARS LATER: Despite the numerous challenges posed by Paul’s ongoing back pain, things have improved a great deal two years later. Thanks to changes in his medications and a program of frequent physical therapy, Paul’s pain has become more manageable, moderate in intensity rather than severe. At Paul’s request, his physician started him on a low-dose antidepressant, and he and Lisa have been seeing a couples counselor. They have a “movie night” once a week after the kids are in bed, and Paul has his friends over every other week for a low-stakes “poker night.” Though still unable to return to his previous construction job, Paul has been working 15-20 hours a week as a site supervisor. Money is still tight, but Lisa has been able to give up her second job. Their children are now all in school, and Paul is an assistant coach for his oldest son’s little league team. Paul and his family still face a number of difficult challenges- they are not saving much money for retirement, sex remains physically painful for Paul, and he is barely on speaking terms with his mother-in-law- but he is cautiously optimistic about what the future will bring.

About the Author: Dr. Edwards is a licensed clinical psychologist with appointments in Anesthesiology and Psychiatry at Brigham & Women’s Hospital in Boston. His research focuses on biopsychosocial aspects of the pain experience, including studies of how negative emotions may magnify the physiological impact of pain. In addition to studying the role of negative emotions in shaping the pain experience. Dr. Edwards’ work focuses on evaluating individual differences in sensitivity to pain, and factors (such as sleep disruption) that alter pain sensitivity.