Getting Off the Pain Roller Coaster
“I’m a changed man. If it weren’t for my looks, no one would know me,” Lenny, a 43-year-old ex-truck driver, who was in a serious accident seven years ago, is typical of many patients we see with chronic pain. After many surgeries and treatments and several attempts to get back to work, he was still in pain. He currently spends much of his day on his farm doing a few odds and ends and watching TV, waiting for his wife and children to come home. This is very different from his active life style many years ago when he rode motorcycles, sailed on his boat, and played basketball with his children. “I feel like I’ve been cheated out of life,” he says. “There’s been times, I’ll tell the truth here, if I felt my wife and children could go on with their lives, if my wife could find someone physically able and who’d support her, I’d kill myself. I’d do it. It’s crossed my mind but no, I’ve never put the gun to my head…it’s the thought.”
Pain As An Identity Crisis
Lenny’s story comes in many different shades and variations. Not everyone with pain goes through what Lenny has, but many people are influenced to some degree or another — some just sporadically and intermittently; others on a daily basis.
For Lenny, pain is more than a physical nuisance that he has to tolerate but a factor that crosses into every aspect of his life. Lenny’s pain affected the general quality of his life, his relationships with his family and friends, and his identity — “Who am I if I am no longer a provider, husband, father, friend, athlete, man? What good am I if I can’t do anything now?” Certainly the physical losses for Lenny were very pronounced as he could no longer work or do the recreational activities he once enjoyed. He had to forego almost all the physical pursuits that both defined him as a man and gave pleasure to his life.
His pain impinged upon his relationship with his wife and children. How does it feel for a man to rely on his wife’s paycheck for support? How does it feel for a father not to be able to play basketball with his son? Like many families whose loved ones experience pain, Lenny’s curtailed their activities as well. If he couldn’t motorcycle, boat, fish, dance or go to the mall, neither would they. So this naturally gregarious person got more and more withdrawn, avoiding friends altogether. His anger and impatience at the situation further alienated his family and friends.
The financial losses for Lenny were also great. Whereas he was able to live comfortably before, things changed. Lenny could calculate to the penny how much he had lost in wages. Even more significant, however, was his feeling about himself as a provider. In a nation where one’s worth is measured by one’s productivity, the financial loss reflects his reduced value as a person — “If I can’t contribute, what good am I?”
The emotional frustrations are also noteworthy. To look at the chores that need to be done and not being able to complete them, to get tired after working for only brief periods of time, and to have to continuously interrupt a task to rest is very disturbing to those affected.
Pain As Loss
For Lenny and others, pain involves loss — physical, financial, self-esteem, and otherwise. In Lenny’s case, it involved the loss of his mobility, his livelihood, his friends, his role as a provider, and countless other privations. Others report losses in daily activities most people take for granted, such as walking, sitting, moving, and lifting.
One of the biggest losses is the loss of health, which has several components, including the ability to feel physically comfortable, to engage in “normal” activities, and to see oneself as a healthy person. Pain is a loss of feeling good. Living with daily, often excruciating discomfort and the prospect of always having to tolerate this unpleasant state of affairs is more than some patients can stand. “It’s indescribable. I can’t breathe, I can’t lie down, I can’t focus…I cannot even begin to describe this agony and I can’t imagine anything worse,” said one woman. “It’s like a hot searing iron all over my body.” “Hell would have to be better than this,” said another. We hear statements like this, which only highlights this loss of feeling good.
The loss of mobility is also devastating. Not being able to move your arms or legs, to walk, stand, lift or turn your head can be more than one can handle. Many people do not even realize how many daily activities are affected by not being able to move even one part of the body. Others report losses in the most routine activities that would not be considered excessively physical by most people. Together with the loss of mobility comes the loss of independence. Not being able to complete a task without help and relying on others to do things they used to be able to do themselves can be both humiliating and frustrating. For example, those in pain may be able to fold laundry, but not carry it or perhaps they can vacuum, but not move the furniture.
The loss of a full life is another major trauma. As Lenny stated, “I feel that I have been cheated out of life,” and like him, many people with chronic pain cannot engage in most of the activities they used to. They find that they are no longer participating in the daily events that give them pleasure and start feeling excluded from life.
In addition, the loss of job and income for some can include an even more dramatic change in lifestyle and is more pronounced for some people than others. However, for many people with chronic pain, these reflect a loss of identity. Some begin to question their very value in life. Not only do they ask, “Who or what am I if I am not a provider?” they ask, “What good am I if I cannot pay the bills, clean the house, take my children fishing, or cook dinner?” In a culture where one’s worth is dependent on one’s doing and contributing, this can be a very real crisis. For many, the loss of identity is also the loss of self-worth. Many individuals with chronic pain are afraid that their identity will be that of a “sick” person and that they will be defined by their illness. This is particularly true if they are given labels like “disabled” or “invalid,” together with the stigma that is associated with those epithets. They view themselves as “damaged goods,” which is a further assault to their dignity as human beings.
The loss in self-esteem comes from the shame of having a body that defies control, a body that doesn’t function the way it should. Unlike a vehicle that doesn’t work, it cannot be traded for another model. To feel trapped in a body that fails daily, is it any wonder that so many people come to feel hate and shame at this very large part of themselves?