Living Well with Chronic Pain: a 9 Step Program
By Dr. Serena Patterson
I am one who has lived with pain for over 20 years now. There are ups and there are downs; times when it recedes into the background and times when it seems relentless and exhausting, distracting me from what I want to accomplish and shortening my patience to deal with the setbacks. I try to consider the pain to be a gift or a companion. But if it is a gift then I want to send it back to the store for a something else; and if it is a companion then it is a whiny, tiresome one.
Readers with chronic pain will know what I’m talking about. Giving up the pain is not an option, nor is giving up on life. The search for something better is on.
Recently, I ran into the best book on pain I’ve read yet: The Pain Chronicles by Melanie Thernstrom. I cannot recommend it highly enough.
I am working now on a distillation; a short list of steps that are helping me to claim a full and beautiful life with pain as a companion. This my work-in-progress.
Here are the steps (thus far):
1. Stop apologizing. Chronic Pain is not a personal failure. It is a disease.
2. Accept pain as part of the human experience. Embrace it.
3. Develop a Language to communicate about pain.
4. Re-arrange your life to realistically accommodate your pain.
5. Be curious about your body; learn all that you can about it. Develop a physiological understanding of how your pain works.
6. Build your personal repertoire of pain relief and feeling better strategies.
7. Pay attention to what you love about life—not what you wish for, but what is there already.
8. Watch what stories you tell about your pain. Don’t let your pain represent the tragedies of life through your body; remember, it’s just pain.
9. Build a spirituality of beauty, gratitude and wonder.
We live in a pain-phobic time and culture. Therefore, if you are in pain, you are likely to be treated as the problem—deeply shamed, socially rejected, and economically marginalized. That’s the way it is; but not the way it should be.
There is a common stereotype about people with chronic pain: we are portrayed as whining, demanding, weak-natured, addicted, lazy, and parasitic. Even in the training that doctors receive, these negative stereotypes are too-often repeated and reinforced as though they were true.
Yet these views are bigoted and wrong, like racism. They stem from the fear of pain that won’t go away, and from cultural ideas we have that deny weakness and even mortality.
As children, we absorb the shaming associated with expressing pain. We are told not to cry or whine. “Suck it up, Buttercup”, “Poor muffin,” and “My heart bleeds for you” are responses that deem all complaining to be weak and illegitimate. By the time we are adults we are fully indoctrinated in the rejection, not only of our own pain, but of anyone who has the audacity to claim suffering as their own.
Short-term pain with a purpose (like childbirth), or following an injury is acceptable, if one is “brave” and doesn’t suffer overly long or loudly. But chronic pain, which does not have a clear-cut or straight-forward relationship to injury, is definitely NOT OK.
People with chronic pain are sometimes treated badly. They lose friends, jobs, and income. They often lose their very closest relationships that they had before the pain—marriages and families are strained not only by the pain but also by the stigma and judgment that accompanies it.
Within the insurance and health care industries, the bias against chronic pain takes a cruel spin. Insurance companies force the pain patient to prove the unprovable—that one is feeling terrible despite looking “fine”. There is a political and financial stake in perpetuating a biased and negative psychological view of “the pain patient” as a cardboard stereotype of the failed human being—there is no obligation to treat the untreatable. Shamed into silence, the pain patient fades from view.
Pain Disorder is still listed as a Mental Illness in the DSM-IV TR (the diagnostic handbook for Mental Disorders that is used by insurers and health care institutions almost exclusively across North American and much of the world) , and there is a less formal but pervasive belief among physicians that Chronic Pain is a personality disorder, rather than a physical illness.
A little bit of perspective is useful here: Epilepsy, Asthma, Stomach Ulcers, and Diabetes have all been widely considered to be emotional disorders in the not-so-distant past. In every case, as medical knowledge and treatment effectiveness has advanced, the stigma has dropped, and these disorders have come to be understood and treated as physical, not emotional, in origin.
I believe that medical breakthroughs in the treatment of Chronic Pain are close. With new (profitable) treatments, Chronic Pain will gain new respectability. For better or worse, it is the profit motive which often moves medicine forward, knocking old stereotypes out of the way as it goes.
Until then, reclaiming quality of life has to start here—by refusing the shame. If we are treated badly, then the shame belongs to those who dish out the lies and the abuse; not to those on whom it is heaped. Throw it off, and back where it belongs.
Never, ever apologize again for the fact that you are feeling pain. It is not a sign of weakness. In fact, it takes great strength to get up every morning with pain, facing the day with hope and purpose. Carry yourself with pride.
Accept and Embrace Pain as part of the human experience.
Pain has always been with us. Our experience of physical and emotional pain lies at the heart of all religious and philosophical systems. We have minds that allow us infinite hopes and dreams, but bodies that confine us in the limits of flesh. “How are we to live in a world of pain, of limitations, and of death?” is the question that drives us to look for something that is more than mortal—something greater than ourselves to believe in and to follow.
Pain is like an inner wilderness, unknown and full of dark and scary places. The cross-cultural anthropologist can show that societies have approached wilderness with two somewhat contradictory strategies: Some, primarily Aboriginal societies, seek to understand, to know, and to live in harmony with wilderness. Others, primarily those societies that have descended and spread from Western European traditions including Capitalism, Colonialism and Industrialism, have sought to conquer and destroy it. So it is with pain; the desire to conquer it and the desire to understand and live in harmony with it are at odds, and are evident throughout the records of human history and pre-history.
Yet whatever one thinks about clear-cutting and destroying wildernesses (and this is generally frowned upon now, as we see the true loss to our planet), those of us who live with chronic pain must admit defeat when it comes to banishing pain. We can reduce it, but we can’t “clear cut” destroy it. We can sometimes transcend it, but we can’t conquer it. It is the price we pay for living in physical bodies. And as frustrating as it is to be of this physical, embodied nature, it is all that allows us to live at all. Without our bodies, we don’t exist. Pain lies at the heart of it all: the paradox of being human.
If we can find grace in a life with pain, even chronic pain that is debilitating or severe, then we can find grace in life. We can be blessed amidst anything—loss, confusion, and even the certainty of death.
Pain is a guide. Pain is a gift. Pain is.
Develop a language of Pain.
Communicating pain is difficult. Oh, how often I have longed for a Pain-Ometer for my forehead, so that my loved ones could just read my pain state like the weather report, and I wouldn’t have to do the reporting and the explaining day after day. “Cloudy with a 60% chance of migraine”, it would read. “Current pain index: 3/10; highly unstable and reactive to noise”.
Alas, I have to tell them. And every time we give the “weather report” of pain, it’s like coming out of the closet, again, with that thing about us that others find so difficult—we are chronic pain patients. We have special needs. We are not just like everyone else.
Just remember step one, and NEVER APOLOGISE FOR YOUR PAIN.
A very accessible starting point is the 10-point scale of pain intensity. Typically, nurses use this, asking patients to think of “the worst pain you’ve ever experienced” and label that a 10. Zero is no pain. Where is their pain now?
This is good, but a better version of the scale uses some observable and fairly universal “anchors” to help us to navigate between the poles of denial (“it’s better now; just a 1 or 2, so let’s forget about it. Sorry I complained”) and panic (“it’s a 12, for the love of God! A 13!”) My pain scale goes like this:
0=I’ve done a good checkin with my body, and no pain found. This almost never happens.
1=Pain is perceptible if I stop and tune in to it.
2=Between 1 and 3.
3=Pain is perceptible even if I’m doing something else, but it’s not too distracting.
4=Pain is mildly distracting.
5=Pain is interfering with my ability to stay focused on other things. Thinking is harder, and I have to stop and concentrate to answer a questions well.
6= Between 5 and 7.
7=Pain is dominating my experience; it’s the main thing I’m able to think about.
8=I could cry, and I can’t do anything “productive” right now except to hurt. I need help with basics like cooking dinner. I’m at high risk for making mistakes on my medication (taking it out of the bottle, but leaving it on the table, for instance).
9=Sweat and/or nausea accompany the pain.
10=Pain causes vomiting, cold sweats, and/or symptoms of shock.
Beyond intensity, pain has other characteristics. It can be burning, prickling, or aching. It can feel pointy or round, sharp or dull, focused or diffuse and widespread. It can be felt deep in the body or just under the skin. One patient describes her fibromyalgia as feeling like an envelope of burning pain that follows the contours of her entire body, just under the skin. Another describes her irritable bowel pain as squeezing, or as an urgent need to eliminate but finding there is “no poop there” (wonderfully described in medical literature as “non-productive urgency”). Some people use colors to describe their pain, and/or color it onto a human body shape on paper when they talk to their doctors or their loved ones about it. It takes practice to develop a language for the qualities of pain, but the pay-off in mutual understanding is great.
Most people with pain are afraid of “whining”. They fear that they will be perceived as childish, demanding, or just plain annoying. Here are some tips that help to minimize the fear of whining:
1. Use a low tone of voice; avoid high pitches. Be matter-of-fact in tone.
2. Keep to the anchored scale; don’t dramatize or exaggerate.
3. Say “thank you” when people listen and respond appropriately.
4. Use paper and pencil charts or notes; paper is very patient while we work out finding “just the right words”. Also, writing it down means we don’t have to repeat it.
And speaking of doctors and loved ones, chronic pain patients need to take a trusted person with them every time they see the doctor. This person can take notes, witness, and even speak up to help the doctor understand the impact of pain on the person’s life.
Re-Arrange your life to realistically accomodate pain.
Flexibility is not our natural strength when we are in pain—rigidity and withdrawal tend to come with the territory, as our brains click into “fight or flee, freeze and appease” mode. We try to push on through bull-headed stubbornness, and/or to avoid the conflicts with others that life changes, big or small, might involve.
Still, pain greatly impacts by the one’s life, and to ignore this is to risk disaster.
Time management is probably the most universal challenge with chronic pain. There is a limited supply of energy now available for doing things. To ignore this basic fact is to set ourselves up for repeatedly running ourselves to the point of pain flare-ups and setbacks. We have to manage our time and our energy very consciously because there is no “fudge factor” of spare time, or of staying up late and pushing ourselves through to meet deadlines.
Given a reduced resource of productive time, what will we prioritize? Whatever gives us maximum meaning and quality of life. For some, this will be driven by pleasure: do what makes you feel best. For others, it will be driven by duty: do what you are most committed to. For most of us, there should be a balance between these things. Put what will let you feel most good about yourself at the end of the day on the top of your list, and do this early when you feel at your best. Eliminate whatever falls toward the bottom of the list. Delegate—to your partner if you have one, your paid assistant if you are extremely blessed, your colleagues, your children, and, of course, to God and/or The Universe; whichever you prefer. To the latter goes all worry time.
A second site of much change after chronic pain is relationships. Marriages and/or romantic partnerships may end. Some friends will quit you; others, who are able to handle it, will stay by your side. It’s not personal. You will find new sources of love. Chronic pain is a great acid test for relationships; learn to be grateful for its power to save you from wasting your time on people who cannot handle you—pain and all. You are now a high-maintenance person to be involved with, and you are worth it.
A third site of change and adjustment is making a living. Some continue their previous careers. Some manage to get on to disability payments of some kind. Others change careers, finding something that they can still do, usually for less money than they made when able-bodied. All of us fear falling off of some edge into poverty. Like all fears, this one is best faced boldly and without shame. Reduced circumstanced may be mandatory; shame is not. Low income need not equate to poverty. But living well on a small income does require creativity.
Living with any disability is an art form. This is even more true for invisible disabilities without accepted protocols, strategies or props (like wheelchairs and white canes) to let us, and others, know what is expected.
There are no expectations for living with Chronic Pain. No rules. No roadmap. As a chronic pain patient, the main social expectation is that you disappear and/or conform to a negative stereotype—this is impossible. So you create a life. If every answer is “wrong”, then at least you are absolutely free to choose the ways you be wrong. You are free from “normal”; you are an artist.
Art is the attitude, but the practice of surviving and thriving is concrete and practical. Make soup—it’s easy, creative, comforting, and cheap. Make something every day—no matter how small. Give yourself bonus points if your “art supplies” cost nothing. Go to the library. Have one part of your home that you can make as warm as you like without driving the whole home heating bill to the sky. Don’t skimp on services like massage or home help if they keep you in the saddle for your paid job. Maybe you know someone who will cook in bulk for you once a week if you pay them. Brainstorm and budget. Take pride in what you create as a lifestyle and DON’T APOLOGISE.
Be Curious about your body.
There is so much to learn about human bodies in general, and about chronic pain in particular!
Far too much health education is couched in lists of “should” and “don’t”. “ Do exercise. Don’t eat potato chips. Get to the gym. Get off the couch. Eat vegtables.” Red wine and chocolate? The jury seems to be out. Why? Perhaps because “do” lists are, deep down, shaming devices. “You wouldn’t be in pain if you had kept in shape,” say the nasty voices in society and in our heads. That, of course, is bull. We’re in pain because we have a pain disorder.
Any list of “should” and “don’t” intended for the masses is going to be oppressive to those who march by the beat of their own drum. We chronic pain patients are made differently, and will have to find our own ways of making it through to a good life.
We can drop right now any shaming voices in our heads about how badly we’ve screwed up on the “should” list. Remember Step One: you didn’t get chronic pain because you failed. It’s a disease, not a cosmic commentary on our life performance.
Better than “shoulds” is an attitude of curiosity and learning. Probably the first thing to look up is the difference between Chronic Pain and Acute Pain. Acute pain has a nice, clear relationship to tissue damage. It also has a nice, clear evolutionary purpose (it causes us to retreat from action and guard the injured part of ourselves so that healing can occur; it also teaches us what experiences to avoid, like hot stoves and nettles). Inflammation is part of the Acute Pain response—inflammation of muscle, skin, and particularly of nerve cells themselves. Psychological factors greatly impact the experience of Acute Pain. The excitement of a sport event will dull the perception of pain; lying alone injured on the road will exacerbate it. A loved one’s face decreases the need for morphine after surgery.
Chronic pain also involves inflammation, although sometimes only the nerve fibers are inflamed (everything else looks infuriatingly normal). Inflamed nerve fibers may not be clearly visible even on the most sensitive MRI imaging reports, and even if we can determine where along the pain pathway to look for them.
The pain perception system, in other words, is working much like it would in the case of an acute injury. With two important exceptions: There is no injury, and the pain response loops around in a positive-feedback system that makes it stronger and more sensitive over time. The pain response has become disordered; that is the disease of pain. The pathways along which pain messages travel from the parts that “hurt” to the brain and back are strengthened and deepened with each experience of pain; the system teaches itself to be more and more sensitive. The more we hurt, the more we hurt.
Psychological factors apply as well—why would they not? Emotions and thoughts happen to use the same information highway in the body that tissues use to communicate about pain—the Central Nervous System. Whatever else is happening on the CNS “highway” that day is going to impact the message. Inflamed and damaged nerve fibres send faulty and disorganized messages along the highway, and this sometimes will cascade into whole-system “pile-ups” with the emotional, physical, cognitive and stress messages of the day.
Pain researchers are making very promising inroads in understanding the micro-mechanics and chemistry of pain perception. There are working models of understanding for how this works, and these will eventually work their way into common knowledge among physicians, physiotherapists, and others who still claim that, as one family doctor put it to me, “you hurt and we don’t know why.”
With such an exquisitely sensitive system for perceiving pain, it behooves us to learn more and more about whatever parts of our bodies happen to be squeaking out for attention. Got irritable bowels? Read up on digestion, and on possible inflammatory influences in the gut. Learn about the wonderful and fascinating world of intestinal flora and fauna—you’ve got an entire ecosystem in there. Got phantom limb or pain? Read up on how severed nerve fibers regenerate in unpredictable and disorderly ways. This tendency also underlies the phenomenon of chronic pain developing in the months following surgery: a nicked or severed nerve can wreck havoc.
I have an unusual and cheeky mantra when it comes to pain education: Don’t tell me what to do. Pain patients are told what to do almost every day of their lives. Everyone they come out to about their pain has a very good suggestion that they are certain will fix everything. And it doesn’t; and then the well-meaning friend who suggested it feels awkward, maybe even judgmental. “Maybe you didn’t try hard enough,” they say. And the pain patient thinks, “maybe I didn’t try hard enough.” The friendship suffers and so does everyone’s self-esteem. So don’t tell me what to do.
Tell me how things work. Explain the system to me. Let me develop a working theory about my own body. Then, if people have suggestions, I can think about them carefully, asking myself, “does this make sense? Is it likely to work? Why or why not? What will it cost me to try? Is it worth the money, the time, the hope? Or should I thank them and move on?”
Build a repertoire of Pain Relief.
Gradually, we get a list of strategies that help. There is no cure; no miracle treatment. Not yet, anyway. Just symptom relief.
What worked yesterday may not work today, and visa versa. What works for your friend with the same condition you have may not work for you, and visa versa.
Medication dosages may work best delivered on a schedule so that they can kick in before the pain gets going; or you may prefer to manage it more flexibly around periods of flare-up and remission.
Massage helps most people. Other methods of creating counter-stimulation and increased circulation at the skin and/or muscle level include brushing the skin with a natural bristle brush, taking hot showers, and bathing in espon salts. Hot tubs help some and make others hurt more.
Warmth helps some, especially radiant warmth from a woodstove, an infared sauna, or Moxa packs (available at natural pharmacies and as small hand-warmer packets in outdoor wear stores). Electric blankets, not so much.
Accupuncture and Chinese Medicine help many. Stretching helps many, and it’s cheap. Physiotherapy is a good place to learn, and to pick up new ideas.
Gentle walking helps most people most of the time, but there may be days to avoid the great outdoors with its icy blasts, bright sunlight and potential for wet feet. Walking with a dog is often better than walking alone, and there is the extra benefit at home of radiant dog-body heat next to you on the couch.
Finding lists of suggested things to do for pain relief is not hard; they abound. The key is to find balance between keeping an open mind vs. jumping in for a miracle, and not becoming cynical in the face of limited results. Some relief is of course better than none, and life gets better little by little.
As we get a list of things that work, it helps to write them down and put them on the front of the refrigerator (if that is where one looks for help). Putting the list in view helps because when we have pain flare-ups, we aren’t very good at remembering how to help ourselves.
Pay Attention to what you Love .
As I write this, I am watching the birds at the suet feeder by my window. I love those birds with all of my heart. I wish them every bird blessing. Their lives are not long, and I have seen them suffer in winter. But what joy they have, too! They fly, for heaven’s sake! How cool is that? Some sing, and some (ravens and crows) talk. They court, and once in a while I get the dramatic experience of watching a family hatch and fledge—oh, what exquisite hope and danger!
There are three very good reasons why we need to pay attention to what we love. First, doing so guides us in Step 4, which was to rearrange our life to get more of the good stuff. Whatever we love IS the good stuff.
Second, when we pay attention to it, we deepen the experience of what gives us joy. Those feeling-good neural pathways, like the pain neural pathways, get deeper and stronger the more they are activated. The principle involved is called neuro-plasticity; the brain “rewires” itself constantly, strengthening the pathways that are used and weakening those that are not. The more we feel good, the more we feel good.
Third, we will care about and protect what we allow ourselves to love. Love keeps us engaged with life. It brings us out of ourselves into places of wondering and wonder.
Watch the Stories that you Tell about your Pain.
We are story-telling, meaning-making creatures. Something as life-changing as chronic pain demands a story, and we will create one. This is natural and almost inevitable, but it carries with it a spiritual danger.
Physical and emotional pain interact. Whatever physical pain we are experiencing when a tragedy strikes us is amplified. Conversely, tragedies compounded by physical pain are harder to manage. Losses get associated with the physical pain, and the pain reminds us of our loss.
If the story we tell is that our pain is caused by an emotional event, then the story we tell ourselves about our pain will deepen the connection between the two kinds of pain. If our story says, “This (physical) pain is here because my marriage ended badly”, then every time the pain flares up we relive the bad ending to the marriage as though it were etching itself into the very fibres of our being; which, in a way, it is.
It is very understandable and natural to construct our pain story around such big loss events. Emotional and physical pain inhabit the same nervous system, using some of the same neural pathways and many of the same chemical messengers. We use the same language to describe them; it’s pain. And because most of us have never gotten a good physiological explanation for our physical pain, it’s origin has been a mysterious void to us. We don’t like mysterious voids. We fill them up with stories—in the case of pain, these will be painful stories. If we are blamed for the pain, then these will stories filled with themes of personal failure, trauma, and/or betrayal by those whom we once trusted.
Probably the kind of life experiences that are most likely to get confused with Chronic Pain are those associated with betrayals in close relationships. It has long been observed that patients with chronic pain are much more likely than those without to have been abused by their parents as children. People with chronic pain are also inclined to have great increases in the pain when important relationships break up. And when pain flares up, many people find themselves ruminating upon the ways that they have been mistreated by people they trusted—the parent who abused them, the sibling who humiliated them, the partner who cheated on them, or the doctor who misdiagnosed and then blamed them.
But the truth is that Chronic Pain, like Diabetes or Asthma or Epilepsy, is a disease. All of these things flare up worse during times of loss or stress; Chronic Pain isn’t so very special this way. If we didn’t have the disease of Chronic Pain, then stress would just be stress. It might affect us physiologically in other ways, like a headache or unstable blood sugars or a crashing immune system and bronchitus. None of these things ARE stress; none of them ARE personal failure or humiliation or abandonment. They are the body’s weakness showing up in times of stress.
So it is important to have a story about body pain that lets us separate life history from the disease. Then, when we have a flare-up, we can think of the trigger event as just a trigger event, and the disease as just a disease. No punishment, no blame, no shame. Pain isn’t anger, or grief, or humiliation. It’s just pain.
Build a Spirituality of Beauty, Gratitude and Wonder.
The life of a person living with Chronic Pain becomes smaller in scale. Extroverts may even become introverts. We rarely have to be told to stay home from the bars; night life is just too stimulating and probably too expensive. Simplicity becomes the rule of the day.
How does one cultivate contentment on such a simple scale? The answer is not particularly difficult; it is by tuning in to the natural world around us and within us. If we can’t make it to the mountains this year, the palm of our own hand is miracle enough—what a wonder of natural technology it is. The way the different kinds of tissue—bone, muscle, cartilage, nerves, blood vessels and skin—are laid out and interact. The worlds within worlds of individual cells. Whatever one’s religious faith (or no religious faith), one can’t escape the conclusion that this is amazing.
Chronic Pain is not a disease with a happy ending for most of us. It’s a disease of coping over many years. But it does not define us, or rule out very happy moments. It does not rule out love.
Perhaps it is a gift of Chronic Pain to slow us down, turn us inward, make us think carefully and observe deeply. The earth is still worthy of our presence—to witness the sometimes heartbreaking beauty of it all; we are still worthy of the honor.