Suffering and the Experience of Unending Pain

Although I have had unending pain for over twenty years, this paper is not written as an autobiography of my experience.  However what I have come to understand about the experience of unending pain will necessarily inform the direction of this discussion.  The experience of pain has been the focus of numerous texts (Morris,1 Good,2 Scarry,3 Carr,4 Wall5), but still more emphasis is needed on the actual lived experience of unending pain.  Why?  First, pain resists language.  Acute pain is hard to describe, while chronic pain is even more problematic.  Chronic pain has no voice of its own,2 and, as if aphasic, most individuals with unending pain are left without a means to convey their real experience.  Second, although many of these authors have demonstrated that pain is always accompanied by meaning, it is not readily recognized that meaning changes over time depending on personal factors in the lived life.  Since chronic pain often spans decades, the only way to know its meaning is to ask the sufferer as no one else can possibly know.6   Third, in addition to the problem of language, much of the lived experience of pain that leads to suffering happens just below conscious awareness of its presence or meaning.  The person in pain is often not aware of all of the inner happenings associated with it which makes self-reflection and understanding difficult.  Fourth, a major source of suffering arises as the person engages directly with the unending sensations perceived as unpleasant, in fact, painful.  For instance, how does the person feel toward the pain or react to it?  How does the usual self (prior to pain) relate to the self now in pain?  Does an internal dialogue develop and what is its tone?  What about the emergence of social isolation and self-doubt?  Lost due to unending pain, how is the self reconstructed? 

Within the medical world health care providers rarely understand the impact of chronic pain, as they see pain primarily as an organic, physiological problem.  But those who do understand that pain affects the whole person can reduce suffering by validating the experience as others are not prepared to do.  To be understood in this way is a relief to persons whose long-term coping with unending pain includes doubt, hopelessness, and isolation.  Such validation may provide the motivation needed for reassessment of the personal interaction with the pain that may be limiting healing.  Recently as I prepared to teach The Death of Ivan Ilyich,7 I was struck by Ivan Ilyich’s experience of pain described by Tolstoy and its parallel with contemporary accounts of unending pain.  I will use some of Tolstoy’s examples to develop themes described previously among sufferers of unending pain to point toward a deeper, richer understanding of the lived reality.  As a clinician as well as a sufferer of chronic pain, I cannot help but then turn the discussion toward the relief of suffering.

A Few Words about Pain

The International Association for the Study of Pain defines pain as “… the unpleasant sensory and emotional experience ...” that reinforces the subjective nature of pain.  This definition is important in its recognition that pain is not simply a perceived unpleasant sensation, but always includes subjective experience.  The term “subjective” in most scientific circles is a pejorative one, but subjective information can be very direct, clear, and precise as it describes the lived experience of the subject and how that experience is processed and interpreted.  The limitation of the definition is in the use of a single word “emotional” to describe the rich, complex perceptual life of persons.  A more precise understanding of pain recognizes that pain is an experience of the whole person.  Pain is integrally related to everything in the person’s life; it does not stand apart as simply the physical or emotional features.  That pain is so much more than physical is obvious to those in pain.  However, fortunate individuals who do not know pain on a regular basis need to be reminded of the complex nature of pain.

The subjective experience of pain includes the recognition that it is the person who experiences.  Eric Cassell writes that persons “cannot be reduced to their parts in order to better understand them,”8 and offers a simple topology of a person.  He suggests the following components to deepen appreciation of what a person is.  The person has a past, life experiences, a family, a cultural background, roles, relationships, and relationships with himself or herself.  Also, persons do things; they are “often unaware of much that happens to them and why”; they have regular behaviors and habits; they have secret lives; they have bodies; they have perceived futures; and they have a transcendent dimension.9  All of these aspects of personhood are obvious, but it is all too easy for separation and fragmentation to be imposed on persons by health care providers who are interested in various parts rather than the whole.  Pain happens to persons, so all of these aspects of the person are important. 

For this discussion, I will emphasize several of the aspects of being a person: (a) persons have relationships within themselves and (b) persons are often unaware of much of what goes on in their inner lives.  Because persons have relationships within, complex inner expressions from self-acceptance and appreciation to self-criticism and rejection are possible.  Pain heightens the internal dialogue of this relationship as emotional reactions including anger, dissatisfaction, frustration, depression, and helplessness are expressed directly toward the body or the painful sensation.  Last week while I was talking with a friend, she mentioned the constant pain in her neck.  She said, “It happens all the time when I’m at the computer, but the computer is my job.  I tell myself to just get tough and stop feeling the pain.  That is all I can do until the work is complete.  Sometimes I just hate my neck and the pain it causes.”  This example demonstrates both inner relationships—“I just tell myself to get tough”—and the relationship of the individual and the body—“… sometimes I just hate my neck.” 

Since we are unaware of much of our experience,10 individuals in pain may not recognize the impact pain has on the whole being.  Cassell writes, “… some things in thought cannot be brought to awareness by ordinary reflection, memory, or introspection.”11  For instance, pain functions as a huge distraction that demands ongoing attention and energy, and it elicits habitual unconscious personal responses, such as avoidance, resistance, and denial.  The unconscious interaction with pain contains personal as well as momentary meanings that influence and form the life.

Some discriminate between acute and chronic pain (unending pain), but this is not particularly useful because very soon after the onset of pain both emotions and personal meanings become associated with the pain.  This temporally based understanding is limited, too, since the experience of individuals with similar pain varies tremendously without regard to time of onset.  For instance, some individuals in pain act as if there is no pain or deny its presence as long as possible, determined to keep their lives prior to pain intact.  Others resist the pain, trying to push it away or doing something to make it go away, as they search for hope that the pain will resolve.  Still others are incapacitated by the pain from its onset. And no matter when the individual begins to acknowledge and accept that the pain is here to stay, unending, and now a central part of the present life, a major change begins.  Unending pain takes on new meanings at this point, such as “How can I live with this pain? What will my life be like now? Who am I if I’m in pain all the time? Can I really cope with this pain? Is accepting the pain giving up to helplessness while not trying to do anything else about it?” 

The Death of Ivan Ilyich and Unending Pain

Literature offers many instances of individuals experiencing unending pain, and perhaps Tolstoy’s The Death of Ivan Ilyich is one of the most striking.  Ivan Ilyich experiences pain from October 1880 until his death on February 2, 1882; at the beginning the pain is characterized as a “growing discomfort” and later as “dreadful and excruciating.”  Slowly, his pain means death.  The pain becomes death or It as Ivan comes to know and name the experience.  For some, it might seem inappropriate to compare Ivan Ilyich’s pain to other individuals with unending pain not caused by a fatal illness.  However, any pain can be fatal.  Some time ago I took care of a 75-year-old woman who suffered pain due to spinal lipomatosis.  She did not want surgery and decided to “live” with the pain.  Some months later, she called me at home one evening, stating, “I can’t take this pain any longer, I need some medication.”  I asked her to schedule a visit to see me in the office, and I also called the pharmacy and prescribed an analgesic.  She did not schedule an appointment, and I forgot about her initial plea for help.  Some months later when I learned she had committed suicide, I also came to understand that she had continued to be in severe pain intolerable to her.  Another patient with chronic headaches following a neurological injury stated that he had “considered suicide because living with this pain is so terrible, but I have a young child. So I guess I’ll just bear the pain for her.”  Even pain due to non-terminal causes can be fatal for the sufferer; it must be consciously integrated into the life.  

Impact of Pain on a Life

Tolstoy published the novella in 1886 describing Ivan Illyich’s death, and interestingly the details of Ivan Ilyich’s experience with pain remain common among sufferers of unending pain today.  Even though themes are common, in Pain As Human Experience, Kleinman writes: “Individuals with the same pathology may develop vastly different disability because pain has different meanings for their live. The site of the pathology may be precisely the same, yet the course is likely to be quite different, depending on the meaning of the pain, the life work of the sick person, and his or her relationship to family, health care and disability systems, and the resources available to treat pain.”12  Tolstoy makes this point clear as he describes Ivan Ilyich’s habit of eliminating unpleasantness from his life in general, but when he is confronted with this undiagnosed pain and especially as it comes to mean death, he is lost.  My aim in re-visiting these common themes is to re-focus attention and explore more deeply the reality of the sufferer of unending pain. 

Issues of Mood:  Anger, Frustration, Irritability, Depression

Pain, as the definition describes, includes emotions.  A part of the individual’s inner experience of unending pain, emotions fill a wide range, such as frustration, despair, lifelessness, but emotional reactions may also burst forth during social interactions with colleagues or family members.  These episodes dismantle the usual relationship with others, including the self.  Pain elicits a sense of dread that leads to rigidity and controlling behavior in the sufferer.  The sufferer also begins to resist the sensation of pain, blocking out the perception as if it did not exist.  This leads to efforts to get rid of the pain, which is a manifestation of trying to control it.  This rigidity may appear in social interactions, too, as frustration, lack of tolerance, impatience, irritability, and general dis-ease.  Tolstoy points this out as he describes Ivan Ilyich’s initial days of pain:

Yet the discomfort increased, and although it had not developed into real pain, the sense of a constant pressure in his side made Ivan Ilyich ill-tempered. His irritability became progressively more marked and began to spoil the pleasure of the easy and proper life that had only recently been established in the Golovin family.  (p. 73)

… for he felt his rage was killing him but could do nothing to control it.  One would have expected him to understand that the anger he vented on people and circumstances only aggravated his illness and that, consequently, the thing to do was to disregard unpleasant occurrences.  (p. 78)

Since the pain just is, the sufferer can do nothing to remove it.  But for most humans, it is difficult to leave the pain as it is and accept it as it is.  Most of us share the habit of wanting to change our experiences into something better or different just as Ivan Illyich desired to “disregard” the unpleasantness.  This pattern of trying to avoid or change the pain generally serves to exacerbate it due to an increase in tension and unconscious effort to eliminate it with the mind.  Because pain hurts, the sufferer wants to get away from it and since this is not possible, frustration, anger, and irritation are common as with Ivan, and these feelings are often so intolerable that they are projected unconsciously onto others as if they are the pain or they may be internalized within the self as though the self is failing in some profound way.

The Collapsing Social World

The “experience of chronic pain is fundamentally intersubjective.”13  The lives of many are directly impacted by the experience of pain.  Relationships with family members, friends, colleagues and co-workers change when chronic pain is added to the equation.  Prior dynamics change when one is in pain, and individuals living and working with the person in pain must be able to adjust and come to understand the new world of this individual.  But this is a difficult task and almost all aspects of established relationships change: Who does what? Who has which responsibilities? Who takes care of whom? Whose jobs increase or shift because of the limitations imposed by pain?  It is common that doubt, anger, distrust arise.  Interestingly, individuals making contact with the person in pain in part determine the nature of suffering.  The impact of the pain experienced by Ivan llyich is evident in his relationship with his wife as well as his friends.  Here are several examples:

At first she [his wife] fought back and said nasty things to him, but once or twice at the start of dinner he flew into such a rage that she realized it was due to some physical discomfort provoked by eating, and so she restrained herself and did not answer back but merely tried to get dinner over with as quickly as possible.  (p. 74)

Having concluded that her husband had a horrid disposition and had made her life miserable, she began to pity herself.  And the more she pitied herself, the more she hated her husband.  She began to wish he would die ….  (p. 74)

They [the friends he played cards with] could see that he was in pain and said:  “We can stop if you’re tired.  Rest for a while.” ….  They were all gloomy and silent.  Ivan Ilyich knew he was responsible for the gloom that had descended but could do nothing to dispel it.”  (p. 83)

Not only does the person in pain suffer from the pain and the response of others, but everyone seems to suffer.  Everyone wants a pleasant life, and pain results in so much emotional upheaval that everyone wishes the pain could be relieved.  There is often a sense of spiraling into the abyss by all—the individual in pain cannot help but have an irritated affect and those around him cannot help but feel irritated.  And so the cycle of dissatisfaction begins.

Suffering from Pain of Uncertain Cause

Unending pain may occur due to a known or unknown cause.  When the cause remains unclear more distress and suffering arise as the focus turns toward understanding the cause and attending to fear about underlying disease.  A frenzy of seeking activity as seen in Ivan Ilyich’s case is common, where everyone's attention becomes pointedly directed toward finding out “What is wrong?”

Ivan Ilyich went out [after visiting the doctor] slowly, seated himself despondently in his sledge and drove home.  All the way home he kept going over in his mind what the doctor had said, trying to translate all those vague, confusing scientific terms into simple language and find an answer to his questions: “Is my condition serious? Very serious? Or nothing too much to worry about?” ….  And in light of the doctor’s obscure remarks, that pain— that dull, nagging pain which never let up for a second—acquired a different and more serious implication.  Ivan Illyich focused on it now with a new sense of distress.  (p. 76)

That month he went to see another celebrated physician.  This celebrity told him practically the same thing as the first but posed the problem somewhat differently. And the consultation with this celebrity only reinforced Ivan Ilyich’s doubts and fears.” (p. 79)

On the other hand, when the cause of the pain is known, attention is turned toward getting rid of the pain.  The seeking is for the elimination of the pain as one may engage various practitioners with various approaches toward this aim.  The seeking behavior remains but shifts from trying to determine the cause to efforts to extinguish the pain.  At this time the pain begins to take on a life of its own as if it is becoming a separate entity within the body.  Most allopathic therapies are aimed not toward improving the person in pain but to abolishing the pain itself.  This focus is different that of holistic practitioners, who begin from the perspective that “the pain is a part of you, so let’s look at all of you.”

Outsider in the Known World:  Distrust, Separation, and Isolation

As pain persists, the individual begins to live in an altogether unknown world.  Here no one else understands or seems to believe the person in pain.  Doubt prevails about the presence of pain and is expressed repeatedly in the actions and words of others.  Such questioning arises especially when limitations of physical activities are repeatedly set, requests for special assistance are made, or symptoms continue endlessly.  After I had been in pain for six months and was still walking with a cane, one of my colleagues said, “I’m surprised you’re still in pain, I thought you would be better by now.”  Such words may be uttered with kindness, but the one in pain usually comes to hear something much different, such as, “Are you sure you’re still in pain?”  This ever-present doubt lingers as if in the atmosphere of the one in pain and adds to the emotional havoc of the personal experience.

Since pain is an intimate inner experience, “even the closest to a patient cannot truly observe its progress or share in its suffering.  Patients thus have no means to establish its validity as an objective part of the world for health professionals or society at large.”14   Despair due to silence is common as the person in pain moves toward self-doubt:  “Am I really in pain?”  This doubt may lead to actions that exacerbate the pain.  As recognition that the pain is unending, the sufferer begins to realize too that constant complaining is not healthy or acceptable. Gradually the world becomes a distant blur, the doubters seem incomprehensible, barriers arise between self and the world, and the sense of isolation expands as one’s personal story is suppressed by prevailing social norms. 

… and he alone was aware of this. Those about him either did not understand or did not wish to understand and thought that nothing in the world had changed.  It was precisely this which tormented Ivan Ilyich most of all.  He saw that people in his household … had no understanding of what was happening and were vexed with him for being so disconsolate and demanding, as though he were to blame.
(p. 80)

And he had to go on living like this, on the brink of disaster, without a single person to understand and pity him.  (p. 83)

“Absolute private certainty to the sufferer, pain may become absolute public doubt to the observer.”15  The upshot is often a pervasive distrust that undermines family as well as clinical relationships.   Good writes:  “Others, however, see the patient as the agent, who somehow produces the pain as a response to social and psychological conditions.  This approach implies that pain is at least partially willful, voluntary, and hence under the patient’s control.  This outsider’s approach informs much of the psychological and psychosocial research on chronic pain and stands at the base of the ideology operative in certain treatment settings.  But this directly contradicts the immediate, unquestionable physical experience of most pain sufferers.16

… his wife adopted a certain attitude toward his illness and clung to it regardless of what he said or did.  Her attitude amounted to this:  “You know,” she would say to her acquaintances, “Ivan Ilyich, like most people, simply cannot adhere to the course of treatment prescribed for him … her attitude toward her husband’s illness was that he himself was to blame for it, and that the whole thing was simply another way of making her life unpleasant …. (p.81)

… In court, too, Ivan Ilyich noticed, or thought he noticed, a strange attitude toward himself.  At times he felt people were eyeing him closely as a man whose post would soon be vacant; at other times his friends suddenly began teasing him, in a friendly way, about his nervous fears, as though that horrid appalling, unheard of something that had been set in motion within him and was gnawing away at him day and night, ineluctably dragging him off somewhere, was a most agreeable subject for a joke.  (p. 81)

Although the changes in Ivan’s life and world were related to his obvious decline in health, his overall situation and response were similar to those of individuals who experience unending pain from any source.

Responses to Unending Pain: Resistance, Denial and Self-Centeredness

“Pain can drive a wedge not only between the sufferers and those closest to them but also within pain sufferers themselves.  The patient often experiences pain as an intrusive foreign agent:  an unwelcome force producing great physical distress as well as moral and spiritual dilemmas.”17  Because pain hurts, a frequent reaction to it is resistance which is felt in the body as a tight, squeezing sensation as though the body itself is trying to avoid acknowledging its presence.  This process effectively increases the felt experience of pain and often seems to solidify the pain as it becomes an object or dense sensation within.  A sense of helplessness develops as pain recurs repeatedly and resisting it consistently fails to alleviate the pain.  Denial, too, leads to increased pain.  When the one who experiences pain buys into the prevailing social attitude that the pain does not in fact exist or that it can’t possibly be as bad as it seems, harmful activities are attempted, such as working a full schedule or lifting objects that are too heavy.  The pain then escalates through recurrent injury.  Denial also leads to despair and reluctance to accept what actually is happening.  Hope, too, attempts to diminish what is present and leads to longing that the future will be better.

… but suddenly … the pain in his side, disregarding the stage of the proceedings had reached, would begin its gnawing.  Ivan Ilyich would focus on it, then try to drive the thought of it away, but the pain went right on with its work …  (p.95)

The pain did not subside, but Ivan Illyich forced himself to think he was getting better.  (p. 78)

His main interests in life became human ailments and human health. 
(p. 78)

Unending pain demands attention.  Often I’ve felt as though half of my brain were focused on the pain, leaving only the remaining half to function in the world.  As with any illness, the world seems to shrink as attention on the self grows.  

The Objects of Pain and the Changing Relationship to the Self

Persons have inner worlds that include internal relationships forming an identity or a familiar self.  When pain fills this self, permeating the body, the self begins to morph into a hard, fixed object that resists, avoids, and denies the experience of pain.  Pain informs the organism telling it to withdraw or protect itself.  In the experience of unending pain there is an inherent and constant attempt by the organism to move away from the pain.  This effort to avoid the pain serves to reify the pain.  As this reification occurs, a separation within the person occurs: there is a self and there is the pain.  The pain now becomes an object within the organism and the organism wants to get rid of it.  The two are no longer unified, nor do they make up a whole. The person is fragmented, sometimes dissociated as parts of the personality begin to work against each other. Internal struggles develop within the person in pain.  “The self”—the person we take ourselves to be—begins to argue with the new self in pain who is often irritable, rigid, depressed, tired, impatient, and so on.  The original self wants to return to being the person without pain who is developing and unfolding rather than continuing as a fixed object reacting negatively because of the presence and impact of constant pain.  A second struggle is directed toward the pain itself.  Slowly, the pain is seen as the specific problem and experienced as an invading agent that usurps the person, demands attention, and determines the experience of the moment. 

In The Death of Ivan llyich, Tolstoy demonstrates how Ivan’s pain is reified into It as the pain begins to mean death.  Pain, of course, does not always mean physical death, but the pain for most does come to mean an annihilation of the previously known self.  The internal relationship with It, the pain, is a struggle of the familiar self to separate from what is so uncomfortable, disruptive, and threatening. 

He went to his study, lay down, and once again was left alone with It.  Face to face with It, unable to do anything with It.  Simply look at It and grow numb with horror.  (p. 97)

And the worst thing was that It drew his attention not so that he would do anything, but merely so that he would look at It, look It straight in the face and, doing nothing, suffer unspeakable agony.  (p 95)

Using this example from Ivan Ilyich may seem overly dramatic or unrealistic regarding the experience of those in unending pain.  But it does serve to demonstrate the helplessness and utter aloneness often felt by those in unending pain, especially as denial abates and the persons recognizes that the pain is now the life.

Another contemporary example of this phenomenon is recorded in Pain as Human Experience18 from an interview with a person in chronic pain.  A portion of this transcript demonstrates the objectification of pain and includes the following comments:

… I’m trying to contain it …
… I have no control over it … although I believe I do …
… when the pain gets really terrible there is no way to convey it or to talk about it …
… sometimes I just go on head trips and rationalization in my mind trying to explain it away, trying to say it is all just imaginary, it’s a figment, it really doesn’t exist …
… If I convince myself in an intellectual way that it’s not there … then I won’t fall apart.  I won’t be so totally dysfunctioning …
… I’m outside myself, this whole thing I have to deal with is, ah, a decayed mass of tissue that is just not any good ….  I’m almost looking at it as if my mind is separated from myself …I don’t feel integrated.  I don’t feel like a whole person because I’m always grappling with some type of physical disorder [pain] … and then I get to see myself as defective …. I’m disabled … I’m dysfunctional.  … then I get angry about that too.

Individuals who experience unending pain invariably develop identification with the pain—“I am a chronic pain person” (which emphasis the defect of the situation).  Such identifications solidify the notion of the body or self as an unchanging, static object.  Over time it is necessary to re-construct this fragmented and diminished self into one that includes acceptance and recognition of pain as an aspect of the whole experience rather than pain as the whole experience.   

Living with Unending Pain

How Difficult It Is

Although the person in pain is not the only one who learns to live with pain and appreciate its impact, it is this person who needs to understand the personal dynamics imposed by chronic pain.  Even though the severity of pain may be diminished with medical interventions—allopathic and alternative—in all likelihood, it will persist.  The individual must learn to live with whatever pain is present in a particular moment.  The willingness to explore the possibilities for living with unending pain can lead to change that enables healing to begin.  To make this shift in perspective is difficult due to factors urging the status quo that include the persistent hope for medical cure, the “stuckness” that accompanies denial, resistance, identification with and reification of pain, the lack of support—financial and personal—for personal insight and awareness, as well as the absence of energy required for such efforts, especially when the source is already depleted.  The absence of simple communication about pain is a barrier to the transformation of suffering because the experience of pain is hard to articulate, its true impact remains unconscious, the sufferer is reluctant to bring up the subject of pain for fear of “complaining,” and the distrust in the lived experience is so common.  The ground for communication regarding pain is unstable.  A simple step to reverse the cycle of implied and perceived doubt and distrust is empathy.  When a person in pain hears words such as—“You are sitting down very carefully today, I see you must be in pain.”—there is an immediate appreciation of the speaker and a thankful feeling that someone has noticed the truth of the painful experience.  To ask persons with chronic pain about their experience using such questions as—Tell me about your pain. How does the pain impact your life now? What’s the most difficult aspect of living with pain for you?—demonstrates recognition of the reality and offers an opportunity for invited reflection that may begin a dialogue about the experience.  This is so helpful when pain lasts years and the experience is held internally day after day.  To be acknowledged without asking and for interest to be displayed reveals caring and provides comfort.  One of the most healing experiences I’ve had came recently after more than twenty years of pain.  I learned that a colleague also had chronic pain, and we decided to talk together about our experiences. We began in a private room sitting in chairs facing each other. Soon we both admitted that our most uncomfortable posture was sitting, and quickly we both moved to the floor laughing with joy that we could take care of ourselves together as happens with few others.  We experienced immediate rapport and empathy for each other.  No doubt support groups can offer such comfort, but the question remains—How can persons not in pain become curious about the experience of pain and thereby open the world of those in pain to new expressions?

Unending Pain and the Problem of Meaning

Once the pain becomes chronic and is more or less accepted as part of the life, the pain develops new meaning.   “… [T]he experience of chronic pain includes much more than raw physical sensation:  pain creates problems of control and of meaning.  Pain creates suffering.  It demands enormous energy in the search for relief ….”19  The entire experience of living with chronic pain requires enormous energy.  The meaning of the pain changes as time passes.  Often the image of the body is diminished due to limitations on its previous capacities; and, this leads to changes in the self image as, for instance, the one with reliable strength, tenacity, resilience. Common expressions may be detrimental to personal images, too.  As I recovered from sacral fractures causing pain in the region, expressions such as “we broke its back” made me feel broken and inadequate, while “it’s a pain in the butt” seemed to point to the general irritable personality that developed due to presence of constant pain.  The “doer” image may require substantial revision as one in pain may no longer be able to provide for others or make things happen as in the past.  This manifests, too, in the truthful recognition that “trying to eliminate the pain” often increases it.  There is often a period of intense grief and longing for the prior self, before one comes to accept the new self that seems “broken” or is perhaps now perceived to be an “invalid.”  These perspectives mark a change in relationship not only to the self but also in the relationship to the world.

In the absence of conversations about individual suffering in today’s world, coming to understand the personal meaning of the pain is an often arduous and solitary experience:

What is so impressive about current forms of suffering is the relative weakening in the modern era of moral and religious vocabularies, both in collective representations and the language of experts.  … The transformation of language is notable, even within the social sciences, for leaving out the human spirit and the sacred. In the contemporary discourse on pain or other forms of suffering—expert and popular—the idea of suffering has been attenuated, sometimes trivialized ….  Neither in the biomedical research literature nor in the pain clinic does the suffering of pain patients and their intimate social circles receive much attention as such, that is, as moral burden of a defining existential experience.  Pain as human suffering in the dominant institutions that deal with it in our times is a question of therapeutic means—analgesia, surgical procedures, rehabilitation, psychotherapy—not of human ends.”20

When I had a follow-up appointment with the attending neurologist six months after my injury, he asked, “How’s your life?” and I felt a sudden relief at his invitation to respond fully about my changed life.  But in the next breath, he added, “… with regard to your back, I mean.”  And I felt the doors close.  Since western biomedicine reflects social and cultural norms, it is not surprising that individuals and societies also have difficulties with the experience and conceptualization of unending pain.  Individuals in pain struggle to make meaning of their lives; such struggles continue to be personal and generally outside of medical conversations and even for some outside of the awareness of family and friends just as Ivan’s struggle toward his pain and death.

The Personal World of Pain

Everyone in pain seeks to eliminate the pain.  Yet, unending pain is inescapable. The body reacts to the pain as if it were acute, dangerous, and perhaps signaling preventable injury and something that needs to be avoided.  The instinct is to move away from the source of the discomfort, e.g., the hot sensation, the sharp point, the sting of an insect.  In the experience of unending pain, this instinctual movement is felt as unsuccessful resisting or withdrawing; and it is manifested by unconscious efforts of the body to push the pain away.  This resistance, however, only serves to cause muscular tightening and tensing of the structure of the person.  As this occurs, the person is likely to begin to notice the “spasms” or stiffness and often a hardening sensation as the body begins to actually resist or push away the presence of the now conscious pain.  Suffering emerges as one wishes for a different experience or begins to feel the helplessness caused by unending pain.

At some point the person becomes aware that the pain is chronic, unending, and will be present for a long time if not forever.  When “How can I live with this pain?” becomes the question, opportunities arise.  In the practice of mindfulness or insight meditation, several interesting observations can be made about pain. Through meditation, persons in pain are often shocked as they explore the experience of pain to find that “it” is only a sensation and the sensation changes from minute to minute.  It is not fixed, hard, and solitary as perceived.  No matter how much pain feels solidified, it is not.  There is no mass of pain, no dissectible entity.  With this awareness the pain begins to shift from a well-defined perception to one that changes and moves as if spreading out or flowing; no longer is it unchangeable in the mind of the perceiver.  What a relief it is to know through experience that unending pain changes from minute to minute, often diminishing to tolerable levels, taking on various shapes and forms, and at least is no longer stationary and consistent.  The individual’s exploration can deepen as the pain itself becomes well known and understood.  Fascinating relationships are observed deep within the psyche between the self as an object in pain and the pain as an object itself.   Another important step in working with such pain is awareness of the habitual pattern of resistance.  This means to begin to notice how the unpleasant sensation is habitually resisted by the body, to feel this happening, and to come to recognize it in the moment.  Mediation points to this unconscious happening and enables clear recognition of the pattern while it is occurring.  Once able to recognize that the body is resisting the sensation of pain, the one in pain can learn to “stay with” the pain rather than resisting it. This “staying with” is a meditation practice of accepting things as they are, rather then wishing for something different or pushing away what is present.   Allowing the pain to be what it is returns it to a morphing, shifting sensation rather then an ever tense, fixed, solid presence.  Yes, pain remains, but it is no longer made worse by the unconscious attempts to resist or deny its presence.  This method of working with pain takes practice, but it is a direct way to touch the pain itself.

Toward Acceptance

When caught in an indescribable world of unending pain, the person is diminished. The person loses some degree of contact and connection with all others in society: family, intimate partners, colleagues, and friends.  As emotions are internalized and projected as anger and frustration on to others as well as back onto the self, a rejected and demoralized self results.  This person feels there is nowhere to turn for understanding and appreciation of the struggle to live with constant pain, and as with other chronic illnesses, the world of the sufferer collapses. This viscous cycle generally exacerbates the experience of pain.  Slowly, as resistance to the pain and wishing for a more pleasant experience abate, a new person emerges and begins to accept the situation as it is—the pain, the frustration, the limitations, the disappointments.  Since “Suffering is an affliction of the person, not the body,”21 the movement to acceptance is critical for the relief of suffering from unending pain.

With acceptance that the pain is unending and the life must be reconstructed, the experience of many individuals begins to shift or unfold.  There is no simple or timely way to become accepting of the situation, and there are many barriers to this evolution including legal concerns, disability issues, personality traits, and family dynamics that limit change.  However, this development opens doors that may facilitate change.  For instance, empathy toward one’s self, including compassion and appreciation for the struggle validates one’s journey with pain and diminishes the ever-present doubt.  The development of kindness and gentleness in the personal experience of self begins to minimize the harsh judgments about the “self in pain.”  Since chronic pain is rarely eliminated, to resolve the suffering that accompanies unending pain both physicians and patients must acknowledge the importance of participation of the whole person. 

Citations

1. David B. Morris, The Culture of Pain (Berkeley, CA:  University of California Press, 1991.

2. Mary-Jo DelVecchio Good, Paul E. Brodwin, Byron J. Good, and Arthur Kleinman, eds.  Pain as
    Human Experience:  An Anthropological Perspective (Berkeley, CA:  University of California
    Press, 1992).

3. Elaine Scarry, The Body in Pain:  The Making and Unmaking of the World (New York:  Oxford
    University Press, 1985).

4. Daniel B. Carr, John D. Loeser, David B. Morris, eds.  Narrative, Pain, and Suffering,
    Progress in Pain Research and Management, Vol. 34 (Seattle, WA:  International
    Association for the Study of Pain, 2005).

5. Patrick D. Wall, Pain:  The Science of Suffering (New York:  Columbia University Press, 2000).

6. Eric J. Cassell.  The Nature of Suffering and the Goals of Medicine, 2nd ed. (Berkeley, CA: 
    University of California Press, 1991).

7. Leo Tolstoy, The Death of Ivan Ilyich, translated by Lynn Solotaroff (New York:  Bantam
    Books, 1987 [orig., 1886]).

8. Cassell, op. cit., p. 36.

9. Cassell, op. cit., pp. 40-41.

10. Cassell, op. cit., p. 40.

11. Ibid.

12. Good et al., op. cit., p. 10.

13. Good et al., op. cit., p. 9.

14. Good et al., op cit., p. 5.

15. Ibid.

16. Ibid.

17. Ibid.

18. Good et al., op. cit., pp. 29-48.

19. Good et al., op. cit., p. 8.

20. Good et al., op. cit., p. 12.

21. Cassell, op. cit., p. xii.