When the Social Foundations of the World are Disrupted: An Interpretative Phenomenological Analysis of Suffering in Pain and Stress Among Individuals Living with Chronic Pain

Abstract

Background

Chronic pain is a multidimensional experience shaped by biopsychosocial factors. How individuals appraise situations plays a key role in chronic pain and is closely linked to stress and suffering. However, the specific ways in which interactions between pain and stress contribute to suffering remain underexplored.

Aim

This exploratory study examined how pain and stress, as lived experiences, shape suffering in Canadian adults living with chronic pain.

Methods

The study’s approach was Interpretative Phenomenological Analysis (IPA). Six participants with chronic non-cancer pain were interviewed twice using semi-structured interview guides. Initial exploratory interviews were followed by more targeted interviews focused on appraisals and stress. Data were transcribed and analyzed using the steps outlined in IPA.

Results

When asked to reflect on stress, participants often described their experiences in terms of suffering or as a pathway to suffering. Participants described suffering as deeply rooted in disruptions to the social dimensions of their lived experience. Three themes were identified: (1) pain intensity is not enough to explain suffering, the social aspects are essential; (2) pain disrupts the social structure of the world; and (3) there is a tension between social normality and the validation of lived pain experiences.

Conclusion

This study contributes to a broader understanding of pain that moves towards an intersubjective conceptualization of pain-related suffering. Recognizing and addressing the social dimensions of pain may better reflect the needs, experiences, and circumstances of people living with chronic pain.

Introduction

Chronic pain is a complex global health issue that imposes significant costs and is estimated to affect one in five people.^1,2 Chronic pain’s complexity stems in part from the interaction of biological, psychological and social dimensions, all of which continuously influence one another and shape the lived experience of pain.³ Sensory inputs interact with personal and situational context, giving rise to an idiosyncratic pain experience.⁴ Consistent with this view, the International Association for the Study of Pain (IASP) regards pain as subjective by definition, since it can be perceived and described on the basis of individual experiences.⁵ Central to this subjectivity is pain appraisal, which plays a critical role in shaping the overall pain experience by interacting with biological and psychological processes.^6–12 For instance, pain that is evaluated as more threatening is associated with greater pain catastrophizing and reduced pain tolerance.¹³ Importantly, pain appraisal does not merely interact with pain perception, but is also linked with stress-related processes that may contribute to pain persistence.¹⁴ Additionally, pain can often be appraised as a source of stress itself.¹⁵ As such, appraisal can be understood as an important process linking experiences of pain and stress. Appraisal may also help us understand how the personal significance of pain and stress contributes to suffering. Given the important role of suffering in models of pain,¹⁶ our focus in this study is on pain-related suffering, which arises when pain disrupts one’s sense of self.¹⁷

The self can be understood both as the reflective experience based on the narratives and stories that shape identity and as the pre-reflective, moment-to-moment experience shaping consciousness.^18–21 Suffering entails disruptions to these reflective (narrative self) or pre-reflective (minimal self) aspects of experience.^17,19 In the case of narrative self suffering, pain can make the narrative one tells oneself more difficult to construct, as it changes what people can do, how they are perceived by others, and how they perceive themselves.²² In the case of minimal self suffering, pain disrupts the pre-reflective way of being in the world, moment by moment, affecting senses of agency, bodily ownership, and time.¹⁹ This important distinction allows us to understand pain not only as something we notice or interpret in our minds, but also as something we live through our bodies, shaping the way we experience the world and becoming a form of suffering itself.

Phenomenological studies on stress sometimes address themes similar to suffering, often using the term distress rather than explicitly referring to “suffering,” while describing experiences in ways that align with the conceptualization of suffering described above.^23–25 These accounts of distress suggest that suffering may play an important role in the lived experience of stress, although this relationship has not yet been established as clearly and explicitly as the relationship between pain and suffering. Considering that stress may be interconnected with suffering and that pain is sometimes appraised and experienced as stressful,¹⁵ stress may contribute to pain-related suffering. However, while pain is known to shape suffering through selfhood disruptions,^17,19,26 less is currently understood about how pain and stress interact as part of the lived and interpreted experience of suffering.

To help fill this gap, this exploratory study was guided by the following research question: How do people with chronic pain interpret pain and stress, and how do these interpretations influence their experience of suffering?

Because pain, stress, and suffering are inherently complex subjective experiences, they are best explored through a qualitative approach to research.^{16–18,27–30} Phenomenology is a particularly well-suited qualitative methodological approach for studying lived experiences as complex as pain and suffering.^31,32 Thus, to help fill the aforementioned gap in the scientific literature, an Interpretative Phenomenological Analysis (IPA) approach was chosen to explore how pain and stress shape the lived experience of suffering among individuals living with chronic pain.³³

Methods

Methodological Approach

IPA was chosen for this study because it supports an in-depth understanding of how individuals relate to the world by focusing on the way participants make sense of their actions and the events they experience, while allowing reflexivity to be used to interpret the participants’ understanding of their own experience.^29,33 This is accomplished through a double hermeneutic approach that involves the researcher making sense of the participant making sense of their experience and pairing an empathic approach with a questioning stance to explore meaning.³⁴ The researcher aims to explore participants’ understanding of, and the meaning they give to, their experiences in order to further interpret that meaning through a phenomenological lens. As reflexivity is an important part of an IPA study, a reflexivity statement was completed to help readers better understand our perspectives and influences (Supplementary Material, Appendix A).³⁵

The interviewing process in IPA emphasizes the conversational aspect of the interview, as the researcher’s understanding and interpretation of the participant’s experience are central to the process. This means that greater focus is sometimes placed on exploring the participant’s ideas and understanding rather than on strictly following the interview guide, in order to develop an account that is firmly rooted in participants’ lived experiences.^29,34 This is IPA’s idiographic focus, which aims to capture the detailed experiences of each participant while also exploring how these experiences may converge and diverge.²⁹ It is based on the understanding that a person appraises and interprets situations from a first-person perspective.³³ The lived experience is therefore central to this methodological approach, which views experience as grounded in personal reality, where individuals appraise and make sense of events that shape their lived experience.

Overall, IPA’s understanding of lived experience, idiography and double hermeneutics, along with its flexibility, makes it particularly well-suited to studying complex subjective experiences such as stress, pain, and suffering.

Recruitment

We recruited six participants (see Table 1) through the Quebec Chronic Pain Association (AQDC),³⁶ an organization that supports individuals living with chronic pain by offering various support services. Participants’ self-reported pain characteristics are presented in Table 2. We purposefully did not recruit participants based on etiology, diagnosis, pain location, or clinical features because our focus was on the lived experience of people living with chronic pain rather than on a particular clinical presentation of pain.

Table 1.

Sociodemographic Characteristics of the Participants

Characteristics	Median (Range) or N (%)
Age (years)	45 (25–65)
Language
French	4 (66.7%)
English	2 (33.3%)
Gender
Women	2 (33.3%)
Men	3 (50.0%)
Non-binary	1 (16.7%)
Birthplace
Born in Canada	4 (66.7%)
Born outside of Canada	2 (33.3%)
Education
University	4 (66.7%)
College or equivalent	2 (33.3%)
Ethnicity
White	5 (83.3%)
Other	1 (16.7%)
Marital status
Single	5 (83.3%)
Widowed	1 (16.7%)
Work status
Working full time	4 (66.7%)
Student	1 (16.7%)
Retired	1 (16.7%)

Table 2.

Self-Reported Pain Characteristics

Participant	Pain Duration (Years)	Pain Location	Pain Interference (BPI-IS; 0 = Does Not Interfere; 10 = Completely Interferes)
1	44	Everywhere except the upper back of the head (bilateral)	5.4
2	9	Everywhere	5.0
3	5	Lower back (bilateral)	6.3
4	3	Everywhere except the front of the chest and abdomen (bilateral)	8.3
5	3	Neck (bilateral); middle of the back of the head (bilateral)	5.5
6	29	Front of the abdomen (bilateral); middle of the back of the head (left); back of the neck and shoulder (left); backs of the elbows, hands, knees, ankles, and feet (bilateral)	6.9

Note: Pain locations were self-reported using a body diagram and are presented according to the regions and laterality indicated by participants. BPI-IS = Brief Pain Inventory Interference Subscale. Scores represent the mean of the seven interference items, each rated from 0 (does not interfere) to 10 (completely interferes); higher scores indicate greater pain interference.

Sample size in phenomenological research is flexible, but IPA tends to favor smaller samples because this approach requires detailed descriptions of experiences and their contexts.³⁷ In line with this, the sample size followed Smith and collaborators’³³ suggestion of six to ten interviews for an IPA study.

To be eligible, participants had to be at least 18 years old, be living with chronic pain lasting more than three consecutive months, have experienced moments when their life was disrupted by pain (in a broad, subjective sense), and be proficient in spoken and written French and/or English. Individuals were excluded if they had a cancer diagnosis related to the site of their pain (in order to better focus the discussions on chronic pain experiences unrelated to end-of-life contexts), had cognitive or physical impairments that would prevent them from participating, or experienced an active state of crisis or active suicidal thoughts. This was initially assessed by trained research staff during screening through a semi-structured discussion with each prospective participant. A safety plan was developed in collaboration with the ethics committee, and a contingency plan was prepared in case participants experienced severe difficulties during the interviews. A member of the research team contacted interested participants by phone to explain the project and its purpose, determine their eligibility through verbal questions, and obtain their verbal consent to participate in the study. The study was conducted in accordance with the Declaration of Helsinki. Ethical approval was obtained from the Research Ethics Board of the Centre hospitalier de l’Université de Montréal (approval no. 23.147).

Procedure

All six participants completed Research Electronic Data Capture (REDCap) online questionnaires that collected written informed consent, including consent to publish anonymized direct quotations, as well as descriptive and sociodemographic data. Pain interference during the preceding seven days was assessed using the seven-item Brief Pain Inventory Interference Subscale (BPI-IS).^38–40 The six participants then took part in an initial exploratory interview, conducted by M.G.M. following IPA methodology,³³ with the support of a semi-structured interview guide (Supplementary Material, Appendix B).^41,42 All the interviews were recorded and then transcribed by professional transcriptionists. The interview guide for the first round of interviews was exploratory, which allowed findings and questions to be generated directly from participants’ experiences rather than being based on predetermined hypotheses.⁴³ With this interview guide, we aimed to understand how pain, stress and suffering interact. We used a combination of closed and open-ended questions, as well as prompts to elicit elaboration, such as “What does it mean to suffer?” “What is the greatest source of suffering for you?” “Do you feel that stress is related or connected to your suffering in any way?” and “What is it like to live with chronic pain?” The first interviews lasted from 52 minutes to 1 hour 53 minutes. According to the participants’ preferences, the interviews were conducted in person at the University of Montreal Hospital Research Centre (CRCHUM) (n = 2) or over the online platform Zoom (n = 4).

The same six participants were re-interviewed using the second interview guide (Supplementary Material, Appendix C) over the online platform Zoom (n = 6).^41,42 Although the first interview guide invited participants to explore the relationships among stress, pain, and suffering, these interviews elicited limited elaboration on the experience of stress. The second guide was therefore constructed to facilitate a more focused exploration of this aspect of participants’ experience.

IPA guidance recognizes that a first interview may lead to further discussion in a subsequent interview, and that more concrete prompts may be offered when a topic is difficult or abstract.³³ Although IPA generally aims to produce an account of lived experience or explore experiential meanings rather than apply pre-existing theoretical frameworks,^29,31 preliminary reading of the transcripts from the first six interviews led us to diverge slightly from the usual IPA approach by incorporating prompts derived from selected concepts in Lazarus and Folkman’s transactional model of stress.²⁷

According to Lazarus and Folkman’s transactional stress model, stress arises from a particular relationship between the person and the environment that is appraised by the person as taxing or exceeding his or her resources and endangering his or her well-being.

Within the model, a situation may be understood as stressful when it is appraised in terms of challenge, threat, or harm/loss.²⁷ We used these categories of appraisal as practical entry points to stimulate discussions exploring how pain-related experiences may relate to stress. To remain consistent with the IPA approach, the questions were open-ended and used flexibly, allowing participants to describe their experiences in their own terms.^33,44

The interview guide included closed and open-ended questions, as well as prompts to elicit elaboration, such as “Do you ever feel threatened by pain?” “What resources do you have access to?” “Are these resources sufficient?” “Do those challenges affect the meaning you give to life?” and “How do you feel during those events?” The second interviews were all conducted over the online platform Zoom and lasted from 44 minutes to 1 hour 12 minutes.

It should be noted that Lazarus and Folkman’s stress model was not used to generate hypotheses or guide deductive coding, experiential statements, theme development, the organization of findings, or interpretation. In other words, the model strictly served as a practical source of prompts for the second interviews, rather than an analytical framework. Additionally, we intentionally did not provide definitions or operationalize any of the key terms in either interview guide to avoid shaping or constraining participants’ responses. Instead, we invited participants to describe their lived experiences in their own words and to articulate the meanings they attributed to them.

Analysis

The analysis began after the second interviews were completed, at which point transcripts from both rounds were analyzed in the same manner and given equal consideration. We followed IPA methods, which are structured but flexible, allowing researchers to adapt the process to fit the nature of their data and the study aims.^29,33 The analysis was conducted by a PhD student (M.G.M).

Although transcripts from the first and second interviews were kept separate, no analytical distinction was made between them based on the interview round. Neither the interview guides nor any pre-established theory or framework was used to structure this subsequent analysis or determine how the transcripts were approached. Instead, each transcript was analyzed on its own terms as part of the idiographic examination of each participant’s experience. The analysis consisted of engaging with each participant’s transcripts individually through repeated reading and interpretative notes in the qualitative analysis program MAXQDA.⁴⁵ We then constructed experiential statements that combined elements of the participants’ original accounts with the analyst’s interpretative insights (double hermeneutic). Finally, we examined connections between these experiential statements within each participant’s account and across participants to explore patterns and variations, which were then developed into broader themes.

To support the credibility of the data interpretation and the coherence and plausibility of the narrative account produced,²⁹ the analysis was audited by another PhD student (C.I.C.) using the interview guides, full transcripts, and a comprehensive set of materials, including exploratory reflections, analytic notes, visual representations, and the progressive development of interpretative statements and thematic structures. Summaries of the participants’ transcripts were written by M.G.M. and reviewed by M.G.P. and C.I.C. to verify that the interpretations were plausible and grounded in the data. These additional perspectives supported the themes derived from the data.⁴⁶ Eight of the twelve interviews were in French and the remaining four were in English. To preserve meaning, M.G.M. analyzed each transcript in its original language, and C.I.C. audited the analysis in the corresponding language.⁴⁷ Both researchers are fully bilingual in French and English and have prior experience analyzing qualitative data in both languages. The quotes were translated using back-translation by M.G.M. and M.G.P. only after the analysis process was completed.⁴⁸ M.G.M. performed the forward translation and M.G.P. the back-translation. Potentially complicated terms and concepts were interpreted according to their original narrative context and translated accordingly.⁴⁷

To support our methodological reporting, we provide the Standards for Reporting Qualitative Research checklist (Supplementary Material, Appendix D).⁴⁹

Results

One of our overarching findings was the prominence of the social dimensions in participants’ narratives. In the context of our results, the social dimensions can broadly be understood as including aspects such as participants’ lived social worlds, the intersubjective nature of lived experience, and the social aspect of the biopsychosocial model of chronic pain. The interview guides focused primarily on pain, suffering, stress, and situations involving challenge, threat, or harm/loss. Participants’ social experiences were addressed only briefly as one of several additional areas of inquiry and did not constitute a distinct focus. Nevertheless, the social dimensions appeared to be embedded in how participants experienced and made sense of pain-related suffering, as highlighted throughout the three themes presented in our results.

Another overarching finding was that discussions intended to elicit reflection on stress often shifted toward participants’ accounts of pain and suffering. Although stress is not a focus in the three main themes presented in our results, it can be understood as an implicit part of participants’ experiences of suffering or as leading to suffering. The quotes below exemplify this pattern.

Participant 2 described how stress became a form of suffering through a sense of disconnection from the self and disruption of their engagement with the world.

It’s a form of suffering to be stressed, to constantly want to find solutions to everything and manage your emotions. You’re not living, you’re not fully in touch with yourself … (P2)

For Participant 1, stress and suffering were associated through a loss of control. As it intensified, stress turned to suffering.

Maybe that’s what causes me stress when I’m in so much pain and have difficulty breathing because the pain is too sharp around my ribs. Well, then it’s like, hey, you’re losing control, hey. warning signal. I think that’s it. I think it’s all related to my control … Stress is very much related to control. Suffering is the loss of control, of that control. (P1)

When discussing the threat of pain, Participant 6 explained how such an experience could eventually lead to emotional distress that may be understood as suffering.

But you feel threatened, yes. You feel as though you have a sword hanging over your head by a single hair. That’s an old image, it’s like the sword of Damocles, that’s it. It’s like having someone shout ‘dead man walking’ at you. You tell yourself,‘It’s coming. Maybe not right away, but it’s coming. Something is going to happen … That’s when the sword falls (laughs nervously). Great distress, yes, great pain, yes, great sorrow, over time, yes, because you ask yourself, ‘Is it ever going to end?’ No, it doesn’t end. (P6)

Following these overarching findings, our results outline three main themes that were central to participants’ experiences of suffering while living with chronic pain: (1) Pain Intensity is Not Enough to Explain Suffering: The Social Aspects Are Essential; (2) Pain Disrupts the Social Structure of the World; and (3) Tension Between Social Normality and the Validation of Lived Pain Experiences. In the first theme, we highlight that the sensation of pain alone could not fully account for participants’ suffering, which was shaped fundamentally by social dimensions. In the second theme, we explore how disruptions to the social structure of participants’ world contributed to their suffering. In the third theme, we describe the tension between the need to feel normal and the need for validation of one’s pain, highlighting how this conflict influenced the experience of pain-related suffering.

Theme 1: Pain Intensity is Not Enough to Explain Suffering: The Social Aspects are Essential

A common point raised by all participants was that suffering was closely linked to social experiences associated with living with chronic pain, such as feeling judged, losing autonomy, experiencing a disruption in their sense of self, feeling lonely, or being mistreated. This is reflected in the quote below, in which a participant identified loneliness as central to their experience of suffering and stated:

The biggest source of suffering in my case was just the loneliness I felt. When you’re first going through that process, it is so isolating. (P4)

To further highlight this point, the sensation of pain was described as tolerable: “I suffer from situations. More than physical suffering, I think. Yeah, physically I can tolerate” (P3) or used as a point of reference to highlight greater suffering: “… the judgment from others … Yeah, that’s it. That makes you suffer more than the pain you feel” (P6). Participant 1 explained that they distinguished suffering from pain, as their experience of suffering was often linked to losing autonomy or feeling judged, rather than to the sensation of the pain itself.

Like today, I hurt everywhere except my hair, but am I suffering? No. I never say I suffer from arthritis or migraines, but I am affected. Yes, sometimes I will suffer, like we said, when it comes to autonomy, how others look at me, or when the pain is really (pause) but in general, it’s not suffering. (P1)

For another participant, suffering was associated with an unbearable experience of feeling alone while simultaneously being stuck in what they perceived as a negative social environment.

At one point, I just exploded, then they just wanted to give me morphine, and then I was like, no, I don’t care, the pain, that’s not even what’s important right now, I want to rest, I want to deal with what I’m in the process of living through, it’s traumatizing. It’s, uh, I’m all alone, it’s a really difficult experience, and there I am in conditions where people are screaming next to me and it’s just not tolerable. That’s where, really for me, suffering and pain were completely separate, yes I was in pain but I was not suffering from my pain. (P2)

The participant’s world was both devoid of the usual connections that make the world welcoming and restricted to a world of unwelcoming social cues (screams).

Together, these accounts highlight that for participants, pain alone does not account for suffering. For the participants, suffering was often rooted in social experiences such as feeling judged or isolated. These encounters often left a deeper impact than the pain itself, showing that the social context of pain plays a central role in how suffering is lived and understood for these participants. Overall, the accounts suggest that while pain is implicated in suffering, suffering frequently involves social dimensions of participants’ lived world.

Theme 2: Pain Disrupts the Social Structure of the World

Whereas in the first theme we explored what participants understood as suffering, in the second, we examine how suffering was lived. We focus specifically on how pain-related suffering was experienced and how it was shaped by disruptions to the social structure of the world, affecting participants’ relationships, roles, and sense of belonging. These social elements formed a central foundation for how they understood themselves and the world. Disruptions to the social dimensions impacted their core sense of self and identity, becoming a profound contributor to the lived experience of suffering. This is attributable to the inherently social nature of selfhood, wherein one’s sense of self is constructed through interactions with others. Consequently, when these social dynamics are disrupted, they can undermine one’s sense of self and lead to suffering.

Participants emphasized that pain was connected to suffering not only in specific situations, but through ongoing disruptions to their inherently social world. This deeply affected how they experienced themselves and their relationship with the world. This was reflected in how pain disrupted participants’ ability to exist meaningfully with others. Living with pain affected what they could do with others: “I have a colleague who texts me every day to say, are you coming? Are you coming? I said look, I already explained to you why I’m not going…” (P1). It altered their ability to share in a common world: “Ah, maybe I won’t be able to enjoy it like everyone else. Feeling different. It’s a reminder that I’m sick, actually.” (P2). It shaped how they were seen by others: “But pain, it’s more, it’s a darker side, and the perception… yes, people say ‘You’re in pain’ and then they look at you” (P6). It affected how they could be with others:

You know, I’m a cheerful guy, I like teasing people. I’m a prankster. I like to laugh. You know, that part, well, sometimes it’s not there. So that part, I find it suffering. (P5)

And it limited how they could present themselves in social spaces: “I cannot sit in a respectable way or share and speak with the respected men … this is embarrassing and I’m sorry for that” (P3). It was through these disruptions to the social world that their state of being shifted toward suffering.

Suffering tinted every aspect of a person’s experience. It altered how they perceived the world and related to others, particularly because those who did not live with chronic pain often could not grasp how deeply this experience had transformed their way of being in the world.

It’s a different world, for sure, like my experience of how my relationships work with people … like they can be sorry for me but not truly understand what I’m going through. (P4)

You know, when you’ve reached the point where you need foam tubes just to hold your utensils because your hands hurt too much, that’s bound to… affect you. So, by putting up that barrier, it’s as though I weren’t letting people know what I go through every day, you know. Well, the foam around the utensils, … it doesn’t leave the house. … [I put up a barrier] to avoid people asking me questions because often people don’t understand. (P1)

Not only did the world feel different, but participants also described experiencing a shift in who they were when in that state of being.

It’s… I’m like a completely different person. And, and that person, I don’t like her, because it’s not me. Even if she’s a part of me, yeah, but it’s not who I want to be. (P1)

Participants often described this as a deeply isolating experience, where connecting with others felt almost impossible. In this state of being, their world felt narrowed or closed off, which made it difficult to relate to others or feel part of a shared reality.

… there’s a distancing that happened, with all the pain, not being well, not feeling good, having anxiety, … a social distance with pretty much everyone. (P5)

[Suffering] I would associate it with isolation, lack of connection to the world, lack of connection to oneself… (P2)

Overall, participants described how pain disrupted the social structure of the world, affecting their relationships, sense of self, place in the world and even how they related to the world. These ongoing disruptions changed how they perceived the world and made it harder to feel connected to others and to themselves, turning everyday life into a source of suffering marked by isolation and disconnection from their intersubjective experience of the world.

Theme 3: Tension Between Social Normality and the Validation of Lived Pain Experiences

In the previous theme, we broadly discussed how suffering is often embedded in social dimensions of the lived experience. In this theme, we explore a more granular part of this experience, namely participants’ conflicting needs to fit in while also seeking validation for their pain. These two needs often coexisted, making the experience difficult to navigate. A complicating factor in this tension was the invisible nature of chronic pain, which made it harder for others to perceive or acknowledge participants’ suffering.

Participant 2 discussed how this unresolved tension could lead to suffering, as the desire to fit in and avoid standing out often came into conflict with the need for recognition and understanding.

People really forget … And it can hurt me in that moment to say that people don’t see it [the pain] anymore, even though I don’t necessarily want them to see it, so it’s kind of a struggle for me. (P2)

To further delineate this tension, Participant 2 expressed that, in order to truly share the world with others, they felt the need to appear normal. This was not just about doing things the way others did them, but about truly being present with them and experiencing the world as others did through an undisrupted intersubjective relationship with the world and others. Chronic pain had disrupted this possibility by creating a gap between their own experience of the world and how others seemed to experience it. This inability to access the world in the same way as those around them contributed to their suffering.

I need to be a bit like everyone else, there are days… when I’m sick but I don’t want the illness to be me, for it to be a part of me, let’s say… yeah, I kind of need to be normal sometimes… and this brings a bit of suffering. (P2)

Participant 2 also described suffering from a lack of understanding from others. They spoke of a gap between how they saw themselves and how others perceived them. This discrepancy stemmed from the fact that those not living with chronic pain could not fully grasp how pain had shaped their experience of the world. This fundamental lack of understanding reinforced a sense of being unseen or misinterpreted in ways that did not reflect their lived reality.

I think the lack of understanding sometimes from those around me can be hard too, even if they’re empathetic… it’s not always easy, and putting themselves in my shoes… I’d say it’s very much tied to my relationship with others and my relationship with myself, my view of myself, that brings me suffering in this case. (P2)

Another factor that contributed to the tension between wanting to appear normal and needing to be validated while living with chronic pain was how pain was experienced by participants as something invisible that could nevertheless have visible consequences. Pain itself could not be seen, but its consequences sometimes became visible through physical limitations or outward expressions of pain. Still, the personal experience of pain remained invisible, in the sense that others could not truly understand how it shaped the person’s access to, or interaction with, the world and their lived reality.

I just felt alone because. If I tried to explain it to people, they just didn’t understand because it’s like oh I’m in my 20s but I’m stuck in bed and everything hurts and I have to use a cane and like. People look at me odd because I look healthy, but I have all these problems … for me it was very mentally distressing. (P4)

When participants aimed to appear normal, any visible signs of pain could interfere with that need. Yet when they attempted to be understood, their lived reality remained inaccessible to others, because pain was experienced through personal or internal disruptions in how they related to the social world. These disruptions could not be fully understood by others observing from the outside.

Participant 1 emphasized that the lack of visible signs of what they were feeling or experiencing contributed to their suffering. Because others could not see the pain they lived with, it often went unrecognized or unacknowledged. This lack of recognition led to a deep sense of loneliness.

You know, people who have cancer, they attract a lot… well, they attract a lot of pity and compassion. But people who have an invisible illness… we’re the great forgotten ones of society. (P1)

For Participant 6, pain could have visible consequences, yet they often still felt misunderstood. Others might have seen their struggles but could not fully grasp that pain was the reason behind them. This misunderstanding played out in everyday actions, where pain influenced how they moved, acted, or appeared. The impact was sometimes partially visible, but what remained hidden was how pain shaped their perception and experience of the world.

For example, crossing the street, your knee hurts… “Am I going to be able to cross the street without freezing up?” I don’t have a cane, what I have doesn’t show, so people don’t realize… they don’t see it, it’s not obvious, you know, so then you start thinking “My God, what are they going to think?”, then it starts spinning, it almost turns into an obsession… (P6)

Overall, in this theme, we highlight the struggle between wanting to appear normal and needing pain to be seen by others. Participants often felt caught between hiding their pain to fit in and expressing it to be understood, with this unresolved tension contributing to their suffering. Intersubjectivity is central to this tension and to the participants’ experience of pain-related suffering, as it helps us understand that people both need to feel understood and need to appear like others in order to share in an undisrupted intersubjective experience of the world. These two needs are both fundamental, yet difficult to fulfill simultaneously when living with chronic pain.

Discussion

In this qualitative study, we aimed to use an IPA approach to explore how pain and stress, as lived and interpreted experiences, shape suffering. We found that the connection between stress, pain, and suffering was often expressed through the appraisal of social dimensions of participants’ experiences. In many cases, these experiences involved situations that were described in terms of suffering. Our results highlighted that social processes shaped suffering in many ways. Our analysis further showed that, through appraisal, participants distinguished between pain and suffering, often describing suffering as the way pain disrupted the social foundations of their world. We also found that people living with chronic pain experienced a recurring tension between the need to appear normal and the need to be understood in their experience of pain, especially when their pain lacked visible signs, which contributed to their suffering. Within a clinical model of chronic pain, our findings fall within the “suffering” component of the broader pain process.¹⁶

The Role of Stress in Pain-Related Suffering

An important overall finding we highlight in this study is that, when responding to questions related to stress, participants mostly described their experience in terms of suffering or as a pathway to suffering. We therefore hypothesize that, in the context of chronic pain, stress may be closely linked to suffering or may itself be experienced as a form of suffering. However, further research is needed to investigate this possible association. In the scientific literature, there has yet to be a clear and explicit link between stress and suffering, particularly in the context of chronic pain. The term usually employed is “distress” and is frequently used to describe the inability to cope with a stressor and the negative consequences of stress.⁵⁰ This is noteworthy as distress is often conflated with suffering or described as an experience similar to suffering, yet distress is also used in definitions of suffering, creating a circular relationship and conceptual overlap between the two concepts.^18,50–54 This conceptual overlap between distress and suffering may help explain why participants often focused on suffering during our interviews when discussing stress-related questions. Future research could aim to clarify the distinction and conceptual overlap between distress and suffering to support the usage and understanding of these complex concepts. In addition, future research could examine whether the interplay between stress and suffering observed in our study is consistently observed in other stressful contexts, as this could help us better understand the lived experience of stress and suffering.

Pain Intensity and Suffering

In the current study, we highlight the notion that, for some individuals, pain intensity may not be the primary factor shaping their lived experience of pain-related suffering. This notion has been echoed by others.^{16,18,55–57} With the results of the current study, we contribute to this body of scientific literature by emphasizing the key role of social dimensions in the lived experience of pain-related suffering.

It is important to note that qualitative methods, like those used in our study, often draw attention to one type of suffering involving disruption to one’s life story or self-identity.¹⁷ Another type of suffering, more closely associated with overwhelming, in-the-moment pre-reflective bodily experiences of pain, has been described elsewhere.^19,58,59 This immediate suffering might not be captured with the methods used in the present study, as for some people living with pain, their overwhelming bodily sensations may be their primary source of suffering.¹⁹ For instance, a micro-phenomenological study found that, among participants with headaches, pain could turn into suffering when it became too intense and disrupted fundamental aspects of selfhood, demonstrating a link between pain intensity and suffering.⁶⁰ However, pain in that study was not classified as chronic. Considered alongside our results, this finding raises the possibility that as pain persists, disruptions to the social dimensions may become more salient in shaping suffering. This is congruent with findings by Sparby and collaborators,⁶⁰ which suggest that in shorter-lasting pain experiences, disruptions to social aspects may still be present but less central to the suffering experienced. However, whether disruptions to the social dimensions become more salient as pain persists remains to be established empirically with a longitudinal approach.

The Contribution of the Social Foundations of the World to Pain-Related Suffering

In our results, we highlighted the importance of the social dimensions in the experience of suffering. The importance of social contexts in understanding pain experiences and related suffering has been steadily gaining support.^55,61–66 For instance, a recent qualitative study using institutional ethnography introduced the term “chronic struggle” to describe the context in which people living with chronic pain must navigate.⁶⁵ The term chronic struggle reflects a framework that acknowledges the complex entanglement of chronic pain, poverty, trauma, and systemic inequities. Our focus on the lived experience of pain-related suffering complements this perspective by shedding light on how some consequences of “chronic struggle” may be lived and felt on a personal level.

Ashton-James and collaborators⁶¹ have recently argued that the social aspects of chronic pain should be prioritized alongside pain intensity, psychological distress, and disability in both clinical research and practice, given that social outcomes may be equally or even more important to people living with chronic pain. Sullivan and collaborators⁵⁵ have emphasized the importance of conceptualizing pain and suffering through a social lens and have argued that the limited success of current treatments may reflect an overreliance on the biological dimensions of the biopsychosocial model. Our findings align with the perspectives of these two studies,^55,61 as the overwhelming presence of the social dimensions of pain-related suffering was evident in the participants’ narratives. The participants repeatedly described social experiences and concerns as central to their accounts of suffering, often without direct prompts, suggesting that these dimensions hold such prominence in their experience that they often overshadow other aspects.

Overall, our findings, together with the studies presented in this section, suggest that the social dimensions of chronic pain may be fundamental to the experience of chronic pain. Therefore, future studies should consider examining how these social dimensions may be incorporated into approaches to treatment.

Intersubjectivity

An important notion brought forward in this study, and an unexpected finding, is that the social dimensions of the participants’ experience of stress and pain are prominent in their experience of suffering. Despite the fact that the interview guide focused broadly on stress, pain, and suffering, discussions repeatedly turned to social situations demonstrating the salience of the social dimensions in participants’ experiences of suffering. This, in itself, is an important finding, as the phenomenological approach used in this study is built on the notion that intersubjectivity and the co-construction of lived experience are central to the human experience.³³ Our results bring forward this foundational aspect of phenomenology that can often remain implicit and highlight how suffering can be deeply intertwined with the intersubjective nature of the human experience.

This intertwining of the intersubjective nature of human experience and suffering could perhaps also be central in contexts other than chronic pain. For instance, a phenomenological study of depression described suffering as a sense of alienation from oneself and others, identifying intersubjectivity as a salient dimension of depression-related suffering.⁶⁷ Other qualitative studies also implicitly point toward this link between intersubjectivity and suffering in lived experiences such as cancer and palliative care.^68,69 Future work could aim to explore whether suffering is lived in the same manner and tied to the same intersubjective foundation of the world in other contexts such as depression or the end of life in a single study across different populations.

Miglio and collaborators⁷⁰ argue that understanding pain as intersubjective is an important step in improving care, as it focuses on the co-development of pain experience and understanding, ranging from medical interactions to broader societal forces. Understanding pain in this way would allow us to direct our attention toward adapting these co-constructed beliefs that deeply affect the intersubjective experience of pain and its meaning. Our results support this perspective and demonstrate how this intersubjectivity of pain is directly tied to the lived experience of suffering. This understanding of the intersubjectivity of pain could be leveraged to improve communication surrounding pain and suffering in clinical and community settings.

Clinical Implications

Our results, along with the broader literature, support the potential relevance of approaches that address the social dimensions of pain and suffering. Further research is needed to determine which specific approaches would be most effective, but expanded access to support groups and the active involvement of existing support networks could serve as a first avenue of exploration.

Our findings reinforce the need highlighted in the literature to emphasize the central role of social dynamics in pain and suffering.^55,61,62,71 Taken together, these findings indicate that treatment approaches could incorporate social factors from the outset to better meet the needs of people living with chronic pain. Exploring these issues may provide more comprehensive insight into how suffering is experienced and how it can be mitigated through social interactions. For example, healthcare professionals could be made more aware of how their interactions may invalidate or blame patients, as repeated exposure to such situations can eventually lead to internalized stigma.

Strengths, Limitations and Future Directions

The use of IPA allowed for a deeper understanding of participants’ lived experience, which provided new insights and helped address gaps in the empirical literature. The two-interview design enabled reflection over time, contributed to rich, layered narratives, and supported the exploration of emerging topics based on the data collected. The analysis was further strengthened by a collaborative and reflexive process involving multiple researchers, supporting the notion that the interpretations were grounded in the data and that multiple perspectives were considered. The sample included participants of varying gender identities and ethnic backgrounds, which contributed to a range of perspectives. However, the small sample size typical of IPA limits the ability to explore differences across these specific dimensions in depth. A potential limitation is that incorporating Lazarus and Folkman’s stress model into the second interview guide may have directed participants’ attention toward negatively appraised situations, potentially influencing their narratives. Recruitment through a support organization may limit the transferability of findings to broader populations, as individuals already connected to such organizations may have had access to resources, support, or validation that shaped their experiences in ways that differ from those without such support. Although no prospective participant met the exclusion criterion concerning an active psychological crisis or active suicidal thoughts, individuals experiencing either at recruitment would have fallen outside the scope of the study. Consequently, the findings may not represent experiences of chronic pain during such acute crisis states. While our study offers meaningful insights into how individuals experience chronic pain, further research with a focus on gender, ethnicity, and other social factors may deepen our understanding of how these factors shape these experiences. Future research could also expand our findings by focusing on populations with more varied socio-economic backgrounds. Longitudinal or real-time qualitative methods may offer further insight into how suffering develops and changes over time. Future studies could also explore how systemic factors, such as stigma in healthcare or lack of access to social support, influence the appraisal of situations and contribute to pain-related suffering. Finally, future work could focus on developing clinical approaches that recognize and integrate the social nature of pain-related suffering.

Conclusion

By exploring the interplay among pain, stress, and suffering, we found that pain-related suffering was deeply intertwined with social experiences such as judgment, isolation, and disconnection. Suffering emerged as chronic pain disrupted participants’ relationships, sense of self, and sense of belonging in the intersubjectively constructed world, making everyday life more difficult to navigate. A persistent tension occurred between the desire to appear normal and the need for one’s pain (which is sometimes invisible) to be validated and recognized, with this unresolved conflict contributing to their suffering. Our results also emphasize the importance of social dimensions in pain-related suffering and point to the potential value of an intersubjective understanding of chronic pain. In addition, our findings raise the possibility that stress and suffering may be interconnected in the context of chronic pain.

By emphasizing the disruption of the social foundations of the world in suffering, the results of our study contribute to a broader understanding of chronic pain that moves beyond individual symptoms toward an intersubjective understanding of pain and suffering. Our findings also lend further support to growing recognition in the literature that acknowledging and addressing the social dimensions of chronic pain are fundamental to care and to developing treatment approaches that respond to the complex, multidimensional needs, experiences, and contexts of individuals living with chronic pain.

Funding Statement

No funding was received for this study.

Data Sharing Statement

Data are not available to preserve participant anonymity.

Consent for Publication

Consent for publication is provided for the contents of this article.

Disclosure

Mael Gagnon-Mailhot reports Grants or contracts from Gabrielle Pagé's research funds, outside the submitted work. MG Pagé is a Junior 2 research scholar from the Fonds de recherche Québec – santé. The authors report that there are no other competing interests in this work.