The meaning of coping with chronic pain – video presentation recording

Presented at the International Network for Research into Psychosocial Adjustment to Long-term Conditions (INRePALC)

1st International Online Networking Event
13th–17th September, 2021

Session Description: Let’s discuss what it means to cope with chronic pain – this is not a data presentation. Instead, I attempt to create a sense of enquiry and self-reflection on how to take the meaning of coping with chronic pain and apply it in the clinic. Thinking about what we do, and what the doing represents in the clinic, can be rewarding.

The meaning of coping with chronic pain

Presented at the International Network for Research into Psychosocial Adjustment to Long-term Conditions (INRePALC)

1st International Online Networking Event
13th–17th September, 2021

Session Description: Let’s discuss what it means to cope with chronic pain – this is not a data presentation. Instead, I attempt to create a sense of enquiry and self-reflection on how to take the meaning of coping with chronic pain and apply it in the clinic. Thinking about what we do, and what the doing represents in the clinic, can be rewarding.

View here.

It’s just one of them things you’ve got to try and manage – meanings of pain for people with brain injury

Lis Dreijer Hammond, Simon van Rysewyk, Chalotte Glintborg, Stephanie Kılınç, Giles Hudson

Abstract

Long-term pain is a common comorbidity for people with acquired brain injury. This chapter explores what it is like to live with those two conditions, focusing on the meaning for the individual. The meaning of pain plays a part in determining people’s emotional reactions and behavioural choices, and it is central for the process of psychosocial adjustment to a life with functional, social, participatory, and emotional challenges. Meaning is also closely linked to the identity changes that typically happen once people are faced with the challenge of living with long-term conditions. The field of positive psychology has contributed valuable insights into this process and the roles of benefit-finding, resilience, and post-traumatic growth are discussed. Two significantly different case stories are used as an illustration of life with acquired brain injury and long-term pain. One case, Julie, illustrates the process of adaptation and the other case, Mark, illustrates the challenge of dealing with pain issues when insight and pain perception has been changed by a frontal lobe injury. In both cases, the meaning of pain is integral to the meaning of brain injury. Neither Julie nor Mark consider themselves to have long-term pain, they live with the long-term impact of their brain injury, where pain is just one aspect. In fact, Mark’s altered pain perception causes him to claim that he feels no pain, yet it is nevertheless a challenge for him. The chapter concludes with clinical recommendations, calling for access to systematic, psychosocial rehabilitation that includes meaning-based approaches. A holistic rehabilitation model is proposed, suggesting that traditional medical and rehabilitation approaches need to happen within the context of psychosocial adjustment and rehabilitation, rather than expecting psychosocial adjustment to happen by itself, as a “by-product” of medical, physical, cognitive, and occupational interventions.

Keywords: chronic, long-term pain, acquired brain injury, meaning, purpose, and identity, psychosocial adjustment and rehabilitation, positive psychology, resilience and benefit-finding, post-traumatic growth

Read the article here.

Conceptualising pain in critically ill neonates or infants

Emre Ilhan and Simon van Rysewyk

Abstract

The belief that neonates or infants can feel pain is relatively recent development. Historically, major cardiac surgery was performed in some neonates or infants without anaesthesia, based on the belief that infants had immature nervous systems; therefore, they were incapable of pain, and were fatally vulnerable to the side-effects of anaesthesia. What was standard medical practice in the past is now considered medically unsound and morally unjust. Given that neonates or infants cannot linguistically describe their pain, researchers and clinicians have considered behavioural, physiological, and neurophysiological cues to determine pain in neonates or infants. Pain assessment based on behavioural cues is not an ‘indirect’ means of inferring pain in the neonate and infant because pain experience is not totally separable from its behavioural manifestations. Since pre-linguistic neonates or infants do not possess the concept of pain, in social settings involving pain, the neonate and infant expresses pain only by virtue of a courtesy extended to signs of pain by linguistically competent adults who have already mastered the practice of using ‘pain’. Thus, the aim of this paper is to describe how clinicians and researchers have conceptualised neonatal or infant pain, and what implications these may have in the study of neonatal or infant pain. Craig’s social communications model emphasises how intra- and interpersonal factors surrounding assessment of infant pain influences the caregiver’s ability to decode the behavioural, physiological, and neurophysiological expression of the neonate’s and infant’s pain. Although the neonate’s or infant’s ability to express pain through behavioural signs is an essential aspect of pain assessment, the role of pain detection falls heavily on the caregiver. In some circumstances, such as severe disease acuity, neonates or infants may not have the capacity to respond behaviourally or physiologically to pain. Therefore, it is argued, examining the caregiver’s conceptualisation of the pain is even more important in these circumstances, as it has obvious implications for pain management.

Keywords: neonate, infant, pain, neonatal intensive care unit, pre-linguistic, meaning, concept 


Read the article here.

De/Constructing the Body: Ancient and Modern Dynamics

Workshop 3: Trans-Formation, Friday 9 April 2021

Mental Imagery in Chronic Pain: An Access to Meaning Beyond Words

Chantal Berna

Collage by Alexey Kondakov

Abstract
Mental images are cognitions, which take the form of sensory experiences in the absence of a direct percept. Images can be opposed to verbal thoughts, i.e. cognitions in the form of words. From the perspective of clinical cognition, verbal thoughts and mental images are different phenomena, with mental images having tighter connections to emotion than verbal thoughts. Recently, cognitive psychology research has focused on spontaneous mental imagery, i.e. involuntary intrusions of often vivid mental images that appear in one’s mind. Spontaneous mental imagery is now viewed as an important part of psychopathological processes across psychological disorders, a potential emotional amplifier and a therapeutic target in its own right.

Pain is a personal experience, so exploring and understanding the patient’s thoughts about pain might contribute to therapeutic success and favour personalized care. In the field, thoughts about pain have been mostly studied as verbal thoughts. Yet, a growing literature is investigating thoughts about pain in the form of imagery.

Clinical Implications
Studying chronic pain patients’ mental imagery provides unique insight into their personal experience, integrating information about somatosensory perceptions, emotional experience and meanings of pain. The study of imagery in pain also gives insight into possible reinforcing mechanisms of pain, and a basis for a powerful, individualized therapeutic approach through different mental imagery therapy techniques.

This chapter describes current knowledge about mental imagery as intrusive cognitions in the context of pain, considers the neuroscientific investigations that have been undertaken, and discusses the therapeutic potential it yields.

Request a pdf copy here.
Published in Meanings of Pain, Volume I. Purchase here.

Further Reading
Berna C, Tracey I, Holmes EA. How a better understanding of spontaneous mental imagery linked to pain could enhance imagery-based therapy in chronic pain. Journal of experimental psychopathology. 2012 Apr;3(2):258-73.

“Me seeing you seeing my pain”

Meanings of Pain (Springer International Publishing, 2016) was created to advance understanding of pain experience as a bearer of meaning. Progress in modern biomedicine is necessary to explain pain and to aid in its treatment; yet, preference for biomedical explanation of pain in the field has meant that research and clinical attention to the experience of pain and to common factors of pain, such as meaning, as both a clinical topic and a research method, mostly remains a blind spot in knowledge.

Meaningful changes that we notice in others are often subtle and small changes in facial expression, and are similar to features of clinicians that patients find meaningful, such as aspects of clinician demeanour (enthusiasm, positive personality, attentiveness), which are often embodied in subtle facial expressions, gestures, or particular tones of voice (e.g., Gracely et al. 1985). Pain is a personal experience, not an action; yet it displays itself in those actions in which a human person in pain is revealed to observation (Craig et al. 2010). Body-parts are subject to involuntary changes during pain, such as reflexive withdrawal, but in the social transaction of pain, the involuntary changes revealed in the face are more meaningful than in other body-parts (Prkachin et al. 1983; Craig, 2009). This is because body-parts do not have the individuating meaning of the face: the meaning of revealing me, here, now. The expression on a human person’s face is largely determined by involuntary facial actions; yet, it is the living picture of the person that “peers” from it, and hence a concentrated symbol of the “self”. In facial expressions of pain, the face is not a mere bodily part, but the whole person: the self is spread across its surface, and there displayed.

Intentional control of pain through facial actions is normally judged by observers to be an insincere expression of pain, and open to doubt (Hill & Craig, 2002). The controlled pain face is perceived as a mask, which conceals the person lying “behind” it. The expressions on the human face are not always transparent effects of the personal experiences that elicit them, as perhaps they are in nonhuman mammals. Human beings can deceive through their faces, and children and adults can use the face to fake, as well as exaggerate, or suppress, pain (Williams, 2002). It is possible that deception is possible because we do not distinguish a human person from his or her face. Protective acts such as withdrawal reflexes, guarded postures, and disabled behaviour, can communicate pain to sensitive observers (Sullivan, 2008). But when I observe another’s pain face, I am not meeting a physical part of him, as I am when I notice his injured arm or leg. I am meeting him, a real person, who reveals himself in the face as one like me. There are deceiving faces, but not deceiving arms or legs.

Facial expressions of pain call on you to respond to me. As soon as I notice pain in another person, my responsibilities are engaged. I am held to account for it. The face has this meaning for us because it is the boundary at which the other in pain appears, offering “this person” as one in need of help. This feature is perhaps at the heart of what it means to treat pain. Care of persons in pain would be impossible without the assumption that we can commit ourselves through promises, take responsibility now for some event in the future or the past, and enter into obligations that we hold as not transferable to other persons—all of which are perceived in the face.

We may separate pain from its social meaning, and assign to it an impersonal, “bodily” meaning. However, an observation of pain which, whether or not intentionally, focuses exclusively upon the body-parts of another, but which neglects the preliminary changes in the face, as well as in the voice, hands and posture, perhaps is unethical. The failure to recognise the personal existence of the other in pain is therefore an affront, both to him and to oneself. In separating pain from its social meaning, we remove it from the interpersonal world of social relations, which compels us to recognise human beings as persons and sometimes to compromise or risk ourselves for them.

The most meaningful feature in displays of pain is the eyes, followed by brows, eyelids, mouth, head, forehead, and then other body-parts (Prkachin et al. 1983). Although glances are normally voluntary, they participate in the pattern of involuntary social communication where one person in painful distress is “revealed” in his body to the one who observes him. To turn my eyes to you is a voluntary act; but what I receive from you is not anything I voluntarily do. The eye enables the human person in pain to be displayed to another in his body, and in the act of display to call on the observer to intervene on their behalf. The complex transaction of pain involves the voluntary and the involuntary to co-mingle on the surface of the human body. The joining of minds that begins when an expression of pain is answered with a reciprocated response is partly fulfilled in “me seeing you seeing my pain”, which is not the reciprocity of normal cooperation, but of meaning. I believe many patients with pain desire to experience first-hand this more concentrated form of social recognition.

References

Craig KD. A social communications model of pain. Canadian Psychology/Psychologie Canadienne 2009; 50:22-32.

Craig KD et al. Perceiving pain in others: automatic and controlled mechanisms. J Pain 2010; 11(2):101-8.

Gracely RH et al. Clinicians’ Expectations Influence Placebo Analgesia. Lancet 1985; 1(8419):43.

Hill ML, Craig KD. Detecting deception in pain expressions: The structure of genuine and deceptive facial displays. Pain 2002; 98:135-144.

Prkachin KM et al. Judging nonverbal expressions of pain. Canadian Journal of Behavioural Science/Revue canadienne des sciences du comportement. 1983; 15(4):409.

Sullivan MJL. Toward a biopsychomotor conceptualization of pain. Clin J Pain 2008; 24:281-290.

van Rysewyk S (ed). Meanings of Pain. Springer International Publishing: Switzerland, 2016.

Williams AC. Facial expression of pain: An evolutionary account. Behav Brain Scien 2002; 25:439-488.

Call for Abstracts: Meanings of Pain, Volume III

Sculpture by Fabio Viale

Volume III Topic: Meanings of pain in vulnerable or special patient groups

Series Editor: Dr Simon van Rysewyk
Publisher: Springer

The Meanings of Pain book series describes how the meaning of pain changes pain experience – and people – over time.

Pain in the moment is experienced as immediately distressing or unpleasant. If pain persists over time, more complex meanings about the long-term consequences, or burden of pain, can develop. These meanings can include existential meanings such as despair or loneliness that focus on the person with pain, rather than pain itself.

Meanings of Pain offers a vocabulary of language about pain and meaning. An objective of the series is to stimulate self-reflection on how to use information about meaning in clinical and non-clinical pain settings. The book series is intended for people with pain, family members or caregivers of people with pain, clinicians, researchers, advocates, and policy makers.

Although chronic pain can affect anyone, there are some groups of people for whom particular clinical support and understanding is urgently needed. This applies to “vulnerable” or “special” groups of people and to the question of what pain means to them.

Volume III focuses on describing the meanings of pain in groups of “vulnerable” or “special” people, such as:

  • Infants or children
  • Women
  • Older adults
  • People with a physical or intellectual disability
  • People with a brain injury
  • People diagnosed with a disease
  • Veterans
  • Athletes
  • Workers
  • Addicts
  • People with mental illness or mental disorders
  • Homeless people
  • People in rural or remote communities
  • People in multicultural communities
  • Indigenous peoples

Invited chapter types
The editor Dr Simon van Rysewyk invites contributions for Volume III on the meanings of pain in vulnerable or special patient groups. The following manuscript types will be considered:

  • Original Research (e.g., original clinical, translational, or theoretical research)
  • Reviews (e.g., Systematic Reviews, Meta-analytic reviews, Cochrane type reviews, Pragmatic Reviews)

Authors interested in submitting a chapter for publication in Volume III are invited to submit a 350-word Abstract, which includes the name and contact information of the corresponding author, to:

Dr Simon van Rysewyk
simon.vanrysewyk@utas.edu.au

Abstract Deadline: open

“It is my opinion that this … work will stand as the definitive reference work in this field. I believe it will enrich the professional and personal lives of health care providers, researchers and people who have persistent pain and their family members. The combination of framework chapters with chapters devoted to analysing the lived experience of pain conditions gives the requisite breadth and depth to the subject.” – Dr Marc A. Russo, MBBS DA(UK) FANZCA FFPMANZCA, Newcastle, Australia, from the Foreword in Volume II

“Meanings of Cancer-Related Pain”

Sculpture by Fabio Viale

Australian Pain Society Annual Scientific Meeting 2020
Hobart Tasmania

Topical Session
Tuesday, April 7, 2020, 3.30-5.00pm

Session Description: Cognitive factors are important determinants of cancer-related pain experience. Simon van Rysewyk describes some common meanings and beliefs that people have about cancer, illness, and pain, and the consequences these meanings have in relation to common help-seeking behaviours or coping strategies people choose to adopt. Suffering is a cognitive and emotional response to recurrent perceived losses experienced in some people with cancer. Megan Best presents on the challenges in assessing people with cancer-related suffering and the relationship of suffering to cancer-related pain. Melanie Lovell compares levels of suffering in people with cancer-related pain versus non-cancer chronic pain, highlighting differential meanings of existential or spiritual distress and mood dysfunction. Best and Lovell outline management approaches to cancer pain and suffering that are not responsive to analgesia, such as meaning- or peace-centred therapies.

Session Objectives
At the end of the session, attendees will know:
– Common meanings of cancer-related pain and how people apply these meanings to cope with their pain
– Common meanings of suffering in cancer-related pain and the relationship between these meanings and non-cancer chronic pain experience and mood dysfunction
– Effective approaches to diagnosis and management of cancer-related pain symptoms, including interventions based on meaning

Presenter Duties
Chair: Professor Jane Phillips, University of Technology, Sydney
Organiser/Presenter 1: Dr Simon van Rysewyk, University of Tasmania
Presenter 2: Dr Megan Best, University of Sydney
Presenter 3: Associate Professor Melanie Lovell, University of Sydney

Humans beings are persons and organisms

Sculpture by Fabio Viale

As organisms, human beings interact with the world and each other through causal mechanisms that control us and every other physical thing. As persons, we act in the world through our thoughts, emotions, attitudes, or desires.

Accordingly, human beings are describable in two distinct, but complementary ways: in terms of the way the world is, through scientific descriptions of the causal mechanisms and laws that explain physical things, or, in terms of the way the world seems, through descriptions of personal experiences and meanings.

One or the other way of describing human beings comes into focus depending on the questions we ask about ourselves or the world. The features of personal experience—thought, feeling, speech and action—are amenable to standard scientific explanation as specific changes in the body. Traditionally, scientific research has had much to say about the physical nature of pain, but much less about the personal experience or meaning of pain. Indeed, the meaning of pain remains a blind spot in knowledge.


A description of a human being as a person means that there is a way of understanding of human beings in which personal experience and meaning, rather than physical causation alone, is needed to answer the question, “What is happening?”

Human persons can distinguish between how things are in the world and how things seem to me. I can recognise within myself a perspective or point of view on the world and identify it as belonging to me. Every person has such a unique perspective; this is partly what it means to be a person rather than a physical thing. In contrast, a scientific description of the world does not presuppose any personal point of view. Physical science does not use words like “I”, “here,” or “now”. Does this mean that “persons” are unobservable to standard quantitative science?

Possibly. Imagine a complete explanation of pain according to the final neurophysiology of pain—whatever it turns out to be. Such an explanation of pain would, to put it very crudely, accurately map specific neurophysiological changes in physical parts in the living human organism and all their true causal interactions across time. However invaluable such an explanation would be to pain medicine, it could not describe the way pain seems to the person who experiences it, for which of the physical objects described in this explanation is me with pain, here, now? Immediate pain always seems a certain way to persons, and this “seeming” determines the experience of the person with pain. In describing personal pain, human beings use language with other meanings than the language used in neurophysiology. The final neurophysiological explanation of pain therefore could explain only one dimension of pain in human beings—the physical dimension—in language that could not capture the personal experience, burden, or meaning of pain.


A philosophical assumption of neurophysiology is that a person is identical with his or her body. Person and body are one and the same thing. In terms of personal experience, however, the identity between person and body escapes personal understanding. For example, when I feel a pain, there is no information or evidence, or nothing that I could discover about my body subsequent to the experience of pain, that could demonstrate it to be false. When I feel a pain, I simply know that I am in pain.

In person to person interactions, we commonly respond to each other as though we are not identical with the human body, but in a compelling sense operating “through” the body, which seems to be a vehicle of thought, emotion, pain or suffering. We feel that each person we encounter in the world is a unique perspective that is not the body, but the “self”, which peers out through the face. The human face is the social instrument of persons. In seeking to understand you, or adjust how the world or your experience seems to you, I interact with you through your embodied perspective.

In pain experience, it is my loss of personal control over my body, and its dominion over me, that create the compelling sense, for me and for others, of an “incarnate” person. Pain imposes a significant vulnerability on persons: the vulnerability of a free person who is overwhelmed in his or her body by the presence of pain. This can make the person, and the person’s significant others, feel answerable for what he or she experiences.


Should investigators introspect on their own pain experiences as study co-participants? – Simon van Rysewyk and Carl L. von Baeyer

161214_Meanings of Pain_Cover

van Rysewyk S, von Baeyer CL. Should investigators introspect on their own pain experiences as study co-participants? In: van Rysewyk S (2016). Meanings of Pain. Springer International Publishing AG: Switzerland.

Abstract

The question of investigators introspecting on their own personal pain experiences in pain studies has received little attention in the literature. Study of this question may reflect ethical reservations about the many points at which self-interest may lead us to introspect on personal experiences through personal biases that in turn impair professional decision-making and perception. Despite this valid concern about research co-participation, we offer three reasons why investigators can introspect on personal pain as co-participants in their own pain studies. First, there is historical precedent for investigator participation and co-participation in scientific pain research using introspection as a study method. Second, general concerns about variability in self-report based on introspection on pain experience partly derive from true fluctuations in personal pain experience and perceived interests in self-reporting pain, not simply error in its scientific measurement. Third, the availability of the Experiential-Phenomenological Method, a mixed research method for the study of human experiences, allows investigators to co-participate with naïve participants in their own studies by encouraging passive introspection on personal pain experiences.

Download a copy of the chapter here.

 

Why are dreams mysterious?

I wake-up and tell my wife about the dream I had while sleeping. That’s a dream-report.

Dream-reports are given by the dreamer in the first-person present-tense. Even if  I dreamed I had incarnated another person (either a real or imagined person), it is always I (the dreamer) who peers out from the face of the other person during the dream. And that’s what is communicated when I tell my dream to another person.

Why do human beings share dreams? 

Sometimes a dream is amazing. Amazing that I could even dream up such an experience. What is important to human beings in this case is that the dream really did impress me. Dream-reports can be spontaneous responses to what we see during sleep. So: that I dreamt such-and-such is amazing and of more interest to other people than what the dream describes. Dream-reports can therefore function more like exclamations or interjections than descriptions of what the dreamer experienced. 

However, the dreamer may sometimes become frustrated trying to communicate the dream in a dream-report. We try to describe what happened in the dream using the medium of language (the dream-report), but we cannot. The dream eludes the net of language. At least that’s how we feel. The dreamer is frustrated with language and may think that since the dream cannot be described, it points to something beyond itself. But – why must a dream be capable of being described? After all, can you describe all the experiences of your waking life? Try and do it. Why must dreams be any different? In life, human beings are both the way and the wayfarers.

For some reason, we see dream-reports as descriptions of dreams. We see them as fragments of a story we assume can be told in full. Yet, dreams cannot be described to our satisfaction. Frustrating. Frustration leads to puzzlement. Most of the time we are puzzled by dreams (our own, and those of other people). Why? – are dreams seen as mysterious because dream-reports are assumed to be descriptions of dreams?