This article was first published in the Island Word in 2010. Since then, Dr. Patterson has made private practice her full-time job, re-inventing her work to fit a quieter pace and environment. The creative project of living a good life with chronic pain continues, as does our teaching on this subject. In the Comox Valley, a wonderful resource for people living with Chronic Pain is the Comox Valley Nursing Center (http://www.viha.ca/comox_valley_nursing_centre/#).
Serena has made a big decision this month: after 19 years of loving what she did, she is leaving her college teaching job. Serena has fibromyalgia, and her days have become increasingly shaped by the presence of pain in her body. When she reaches a certain intensity of body pain, the multi-tasking part of college teaching and the noisy environment of a full classroom become too demanding of her attention. It’s like, she says, trying to think clearly through a curtain of dense fog, and it is exhausting. Change has become unavoidable.
We have spent several months, even years, contemplating this together. We have planned strategies for increasing her role in the counselling office. We have gone over, many times, the exact nature of her pain—the things that magnify and diminish it, the activities that she can still do well, the need for physical movement to keep it at bay and the need for creative time to transform it into things of beauty. We have added dietary changes and the best recommendations of our herbalist, our Chinese Medicine doctor, and our Western Physician. We hope that an improved quality of life will allow her also to do the things that bring cash into the family budget, since we are far from financially retirement-ready. In short, we have first-hand knowledge that complements (and often contradicts) what the text books have to say about living with pain. And we are still convinced that chronic pain does not rule out love, beauty, zest, and meaningful work.
We do, however, live in a culture that is intensely uncomfortable with pain. There are many reasons for this discomfort, and it affects us all in many ways. Modern pharmaceuticals are a wonderful tool in pain management, but perhaps they have also contributed to a general squeamishness and denial toward pain as a natural facet of life.
Pain is chaotic, intrusive, unpredictable, and can ruin the best of plans. Modern life does not deal well with unpredictable sources of chaos. From the time we start Kindergarten we learn to accept the neat division of time into weeks, hours, and minutes as a naturally occurring event. Productivity and punctuality go hand in handd. Pharmaceuticals may allow us to continue to accept and function within this artificially scheduled productivity schedule, with of its tidy predictability, without questioning, falling out, or “failing”. Pain shatters this illusion.
Pain also reminds us of our mortality. To be mortal is to have physical limits: we cannot leap tall buildings in a single bound, clean the house in the wink of an eye, single-handedly bring world peace, or deliver that quarterly report by tomorrow morning. Mortal beings also will one day die. Pain teaches us that we do not belong to a modern world of steel and reinforced glass; we belong to the ancient world of things that live and decay.
Next to pharmaceuticals, the other commercial business that contributes to the cultural denial of pain is that of insurance. The insurance industry helps to ameliorate unpredictable losses, but it also plays upon unrealistic dreams of immortality. When bad things happen, we are told, loss is escapable. Pain need not follow. Perhaps it is not surprising, then, that loss of insurance coverage and the denial of benefits are two big problems that chronic pain sufferers nearly always run up against. Insurers tend to deny the reality of chronic pain without visible tissue damage, and the emotional damage of being treated as liars when applying for benefits compounds the inner confusion and turmoil of having the pain in the first place. Fighting the insurance company has a certain righteous appeal to it, but a focus on proving the pain is very risky to personal happiness. Sometimes walking away from false security and into diminished financial resources is, in fact, taking the more life-affirming path.
Finally, unavoidable pain messes with our notions of a just world. The desire to preserve the belief that pain comes to those who are too lazy or too stubborn to have avoided it in the first place is great. “If those people are inferior to me,” goes the thinking, “then I can avoid pain by living my life the right way.” Physicians are, by no means, immune to this need. They are sometimes the first to distance themselves from, or to display hostility toward, the patient of chronic pain who “fails” to get better with treatment.
Being somewhat contrary by nature, Serena is inclined, on her better days, to accept chronic pain as a spiritual path, if not a gift. We who hurt may be the suppressed cultural voices of mortality. We learn, and can teach, the practice of cherishing life in all of its fragility. It may be a lonely a misunderstood path, and there are many who, with the very best of intensions, will argue that it is unnecessary and avoidable. We who suffer from pain may find ourselves losing friends and falling off of party invitation lists. Still, for all it is a thorny life path, it does have roses.
So how does one go about living a good life in the presence of pain? There are many things that we have found helpful. Some of these are simple, but most of them form the basis for a lifetime of practicing and creative improvisation.
A good place to start is to develop a good vocabulary for describing your pain. Pain has at least three dimensions to it: intensity, quality (or color), and emotion.
A simple 0-10 scale is a great tool for communicating the intensity of pain. One way to anchor this scale is to say that “10 represents the worst pain you have ever experienced, and 0 is no pain at all.” For us, the scale is improved by adding some more observable anchors to it, since one person’s experience may not be easily transferred to the next as a reference point. At our house, pain under level “3” is present but can be ignored, sometimes with effort. At “5”, the pain begins to interfere with concentration and thinking. At “7”, doing other things besides hurting becomes difficult; at “8”, experiencing the pain is just about all one can do. At “9” and “10”, the body itself reacts to pain through secondary symptoms like nausea, sweating, trembling or involuntary crying.
Being able to communicate pain intensity very much improves the quality of our family life, because others have a chance to accommodate their expectations of the person, and to avoid taking a wince or an exit from the dinner table personally.
Quality of pain is harder to describe, but a facility with metaphor helps. There is dull pain, squeezing pain, itchy pain, sharp-like-an-ice-pick pain, and sharp-like-a-needle pain. There is cold pain, hot pain, stinging pain, heavy pain, and pain accompanied by lights. There is pain fitting close to the skin like a tight clothing, pain that is deep inside the body, pain that stays in one spot, pain that radiates to other places. This kind of vocabulary-building is best practiced when we are in a pain-free state, so that we can make maximum use of our creativity. Laughter is optional, but helpful.
Finally, pain perception and emotion are very closely intertwined. On the one hand, we are hard-wired to read pain as a signal of distress and the need to DO SOMETHING QUICK! On the other hand, think of the child whose “owie” is magically cured by Mama’s kiss. Fear, anxiety, and suppressed anger are all pain-multipliers. Loving feelings and laughter are pain-reducers.
Many pain management techniques teach the skill of observing our pain while letting go of emotion and judgment, as in, “I have a strong, needling sensation in my elbow; how interesting.” In the case of chronic pain, where the pain sensation is disconnected from the actual health or wholeness of the tissue, this technique can be immensely helpful. In therapeutic language, it goes by the name of “mindfulness”. On the other hand, when we are affected by the pain-multiplying emotions to the point where we are in a negative-feedback loop, it pays to be able to communicate this to someone who can help us to calm down. Just the act of saying, “I’m in pain and it is freaking me out,” relieves some of the pressure, and helps the other person know what to do.
Once we become good communicators, we can begin the long and constantly shifting task of accommodating our lifestyle to the presence of pain. The point is not to allow pain to run our lives, but to rediscover faith in ourselves, our inner experience, and our right to happy, rich lives alongside this uninvited but familiar companion. There are usually shifts in relationships, friendships lost and found, changes in how we spend our leisure, and even in how we make our living. Disposable income almost always plummets. Sill, when the pain staying where we are outweighs the pain and fear of change, then we will make changes. Learning to overcome our fear of stigma and to communicate clearly about pain means that we don’t have find our way through these changes all alone.
Dr. Serena Patterson is a Registered Psychologist and Monika Grünberg is a Registered Clinical Counsellor. Besides raising a family and writing together, they also practice as GrunbergPatterson Counselling and Psychological Services. Their phone number is 250-339-3269, and their website is www.grunbergpatterson.ca.