“When I feel the worst pain, I look like shit” – body image concerns in persistent pain

2.1 Participants

The sample consisted of seven adult clients (18–65) who had been suffering from persistent musculoskeletal pain for at least 3 months. Purposeful sampling was used to obtain rich information on factors potentially influencing body image and pain. Participants were recruited from a pool of pain patients who had previously registered their interest in future research projects at Örebro University. We contacted individuals by telephone to inform them about the study and inquire about potential interest. Those who were interested were sent written information about the study and a consent form which they were asked to sign and return. Participants were reimbursed for their time and effort with two cinema tickets. Ten pain patients were invited after telephone screening. Two individuals declined participation subsequently, and audio recording of one interview was erased by mistake resulting in a final sample of seven participants [six females, mean age of 40 (19–56)]. Pain duration ranged from 2 to 27 years. All participants were suffering musculoskeletal pain, mainly in their back and often secondary neck and shoulder pain that was attributed to the primary pain. One participant was suffering fibromyalgia and arthritis. The study was approved by the Regional Ethics Board, Uppsala (2015/480/1).

2.2 Measures

2.3 Data analysis

Interviews were transcribed and read aloud to the other interviewer who simultaneously read through the transcript to ensure accuracy of the transcription. Data was analysed using TA, which allows for a systematic coding and analysis [21]. First, interviews were coded in the order they were transcribed, and coded independently by two separate coders (authors LL and KR). The initial coding of each interview was done separately, after which codes were discussed and mutual codes agreed on. Codes were defined as discrete meaningful parts of the transcript, including some context. Codes were also defined according to how well they related to the purpose of this study [22]. In total, 333 codes emerged, and were grouped into 57 categories of similar topics. Next, overlapping categories and themes with higher prevalence were identified, resulting in 13 subthemes. Themes were crosschecked by re-reading interviews purposefully searching for information initially not noticed during the coding process while checking if subthemes still appeared a good fit. Finally, subthemes were mapped out and related to one another, resulting in two main themes, six subthemes and one side-theme. Lastly, we sent all participants a summary of the themes asking if they were in agreement. Two of the six participants responded confirming that themes were representative of their experience.

2.4 Procedure

On arrival participants gave written consent. Participants who agreed to share their drawings for publication were subsequently asked to sign a separate document of informed consent, to which five participants had agreed. Subsequently, the interviews were conducted in a quiet therapy room at the university, and audio-recorded with a digital recording device. Participants were offered snacks during the interview and could take a break if they needed one. At the end of the interviews we asked participants to fill in three questionnaires related to pain and body image. Participants were assigned a code number used on all forms to ensure their anonymity, and all information that could potentially identify the participant was excluded or changed in the transcription process.

3.1 Questionnaires

Sample characteristics and questionnaire data are summarised in Table 1. Data from participant 6 is not available. Notably, all but one participant self-report pain catastrophising on the PCS in the high range (above 20). No participant met diagnostic criteria for BDD as assessed with the BDDQ. However, most participants reported elevated appearance concerns as measured with the AAI, with four out of six participants scoring above 14, suggesting they were moderately engaged in appearance-related threat-monitoring and avoidance behaviours.

3.2 Qualitative data

Figure 1 presents a thematic map illustrating the identified themes and their possible inter-relationships. Two main themes emerged, namely “Relationship with the painful body” and “Dissatisfaction with the body”, both of which were characterised by three subthemes, respectively, and one side-theme relating to both main themes. Since this study set out to examine body image concerns in persistent pain, we present the results with a focus on body image and related coping. Coping is brought up in the various themes that were identified. Table 2 provides sample quotes of each subtheme.

Figure 1:

Thematic map highlighting two main themes, one side-theme and six subthemes, with number of participants related to each theme.

3.2.2 Main theme: dissatisfaction with the body

This theme captured participants’ dissatisfaction with their body regarding function, appearance and the way their pain was indirectly communicated. Three subthemes reflected this: “Distress due to impairment and limitations”, characterised by negative feelings due to the limitations associated with living with persistent pain. “Ambiguous communication through demeanour”, which is seen in participants describing how their pain is visible in uncontrollable ways (e.g. by limping or hunching) and how this can be misinterpreted. The theme “Appearance concerns”, relates to dissatisfaction with one’s physical appearance and ways of dealing with it. Coping behaviours here can be framed as both body image and pain-related.

3.2.2.1 Subtheme: appearance concerns

All participants reported appearance concerns to a greater or lesser extent, most commonly about their weight and body shape. Appearance-related coping included fixing behaviours such as make-up routines, exercising and dieting. One participant uses fixing behaviours to help herself cope with appearance concern, e.g. by braiding her hair to “look pretty” (Participant 5). Others coped through avoidance behaviours, for example avoiding reflections of oneself in mirrors, weighing scales, or self-reassuring that one still looked the same as when they were younger. One participant avoided mirrors: “I have a pretty big mirror in the bathroom, I don’t look, I don’t look at myself in the mirror... because I don’t like what I see.” (Participant 2). Others comforted themselves by favourably comparing themselves with people whom they thought were worse off: “Yeah… And then you of course look around on the beach, well, there are actually those who are bigger than I am. And it’s like nobody cares, nobody’s looking at me!” (Participant 3). None expressed concern about the appearance of the specific body part in which they localised the pain. One participant cared less about her appearance, as she grew older.

3.2.2.2 Subtheme: distress due to impairment and limitations

Most participants expressed distress, frustration and anger about the perceived limitations and dysfunction due to their pain; often related to giving up hobbies, dreams and work; or related to relationships, comparing with others and a sense of being a burden. Notably, two participants also expressed feelings of gratitude and happiness about what their bodies could do despite the pain. Participant 7: “Sometimes when I can hardly bend down to reach for things because I’m so stiff then it (her body) is very old.” Participant: 5 “You should be able to sit on the floor and to be able to do certain things, you should be able to sit on your knees somewhere but then it hurts, my knees lock up, things like that makes you feel like you’re a retiree.”

3.2.2.3 Subtheme: ambiguous communication through demeanour

The majority of participants intended, at times, to communicate their pain and make it visible through pain-behaviours such as painful facial expressions (grimacing), or posturing (hunching over), or limping. However, at other times, they viewed their pain-behaviours as something negative as they thought it made them look weak or disabled. For example: “I want people to see me as strong. But sometimes I want people to see me as weak because, you want closeness.”(Participant 1). Generally, participants believed their pain-communication failed and simply conveyed low mood, tiredness or being disengaged.

3.2.2.4 Side-theme: appearance concerns affected by pain and mood

Appearance concerns were also connected to pain in indirect ways, mostly through mood and fatigue. Many described how, especially on painful days or periods, they became more tired and felt depressed, which in turn increased their appearance dissatisfaction. Others said their pain, related tiredness and negative mood made them look worse. Participant 3 felt she looked the worst when she was in pain, which she experienced as “everything just hangs down”. See Fig. 2 for an illustration of this quote by her self-portrait drawing. Few participants were less invested in appearance when in pain.

Figure 2:

Self-portrait of participant 3, illustrating how she perceives her body image on painful days, i.e. “everything hangs down”.

Others expressed how their pain interfered with various appearance-related coping strategies, which in turn seemed to increase their appearance-concerns, and motivated them to find other appearance-related coping strategies. For example, one participant was torn between covering herself up in order to reduce pain and trying to look attractive: “Which gets frustrating when you’re getting dressed and then your neck hurts like hell, and then just “I want this jumper.”, but it doesn’t cover the neck, so I have to pick that jumper instead, which isn’t as good looking, but I need to wear it because I need to get through the day sort of. And that’s annoying, that’s terribly annoying.” (Participant 5). She also used appearance-coping to increase pain tolerance. This subtheme is also linked with the theme “Relationship to the painful body” in that it highlights how individuals relate to and engage with their bodies, for example as an obstacle to engage in appearance-coping. Participants “Dissatisfaction with the body” seems to depend on mood, varying energy and pain levels which affect a persons attitude towards their body.

4.1 Appearance-concerns and persistent pain

All participants reported that they had concerns about their appearance, which featured in the two themes “Appearance concerns” and “Appearance concerns affected by mood and pain”, and was further validated by self-reported appearance anxiety with four out of seven participants (57%) scoring in the moderate range on the AAI (in the general public about 20% score in this range). Participants were particularly concerned with weight, and many reported not liking seeing reflections of themselves, especially on painful days, and therefore tended to avoid mirrors. Low mood and fatigue as a result of their pain seemed to worsen the perceived body image of most participants. This was illustrated by one account of experiencing her body “hanging down” and not feeling beautiful when in pain (Participant 3); which was also reflected in her self-portrait drawing (Fig. 2). Some reported that they had already suffered from appearance concerns prior to the onset of their pain, and it is not clear from the interview data how much their concerns have changed over time as a result of their pain. However, it seems likely that the experience of persistent pain had a significant impact on the person’s perception of their appearance, possibly via pathways of mood and fatigue as highlighted in the theme “Appearance concerns affected by mood and pain”. The finding that mood and pain relate to appearance concerns is also corroborated by Grossman’s study (2014) that found that greater levels of pain-catastrophising were associated with higher body dissatisfaction or negative body appreciation. In fact, five of the six participants who completed the PCS scored 20 or more, which falls into the “high” range [23], raising important research questions about the role of pain catastrophising in body image concerns. For example, how do body image concerns interact with pain, and more specifically pain-catastrophising, over time? It is conceivable that pain catastrophising aggravates the person’s body image through various cognitive and attentional processes such as attending more to the limitations of one’s body due to pain, appraising one’s body function more negatively, or underestimating one’s ability to move. Future research is warranted to examine how pain catastrophising affects one’s body image, particularly in people with persistent pain.

We also examined whether patients with persistent pain experience a distorted view of their painful body part, similar to patients with body dysmorphic concerns who experience a distorted perception of a particular area of their body which they are preoccupied with [24], [25]. However, contrary to this research question, this was not captured in the self-portraits or accounts, and participants from this sample were not preoccupied or particularly worried about the appearance of their body part in which their pain was localised. However, it is possible that these participants were in fact more concerned that their body area “looks normal” and does not show how much pain they are actually experiencing, which may relate to the commonly expressed worry of ineffective pain-communication (see “Ambiguous communication through demeanour”). On the other hand, body image distortions may take a different form in pain patients than in BDD; e.g. pain patients may experience unrealistic imagery of their bodies as appearing old, frail or handicapped, a theme we discuss in more detail below (“Body image and function”).

4.2 Appearance-related coping in persistent pain

All participants engaged in appearance-related coping, which is also reflected in the various themes identified, such as “Body awareness”, “The Body objectified”, “Distress due to impairments and limitations”, or “Appearance concerns affected by mood and pain”. Participants reported a number of different appearance-related coping behaviours that may stem from a poor body image. For example, six patients reported that they were increasingly aware of their bodies, actively scanning their bodies for pain sensations, which seemed to serve a threat-monitoring function in that they attempted to estimate how painful their days would be. Hyper-vigilance in pain is well described [26], and as such further validates our sample. However, it is unclear to what extent scanning and monitoring of pain-related sensations affects the person’s body image. We found clearer evidence for a relationship between of pain-induced low mood and appearance concerns. For example, all clients reported that low mood, as a result of their pain, adversely affected the perception of their appearance, which in turn led them to engage in various appearance-related coping behaviours such as make-up routines, grooming, or mirror avoidance. It has previously been reported that negative affect and depression are related to pain [27], [28], [29], and it is conceivable that low mood mediates the relationship between pain and appearance concerns. This finding also corresponds with Baker et al.’s study [30] demonstrating that induced low mood can lead to a negative body image evaluation.

While some patients reported that they did not care so much about their appearance, the majority of them reported significant appearance investment, as noted through the various forms of exercising, dieting or fixing behaviours. Participants also reported that they avoided mirror reflections of themselves because they felt distressed by the look of their appearance. Others also avoided using scales in relation to weight concerns. These coping behaviours appear similar to those in clients with body dysmorphic disorder or eating disorders, and may be indicative of a distorted body image. Another client (participant 3) engaged in positive rational acceptance which can serve the function of reducing appearance-related distress through downplaying the importance of appearance or convincing oneself that the worry experienced is unproportional [31].

4.3 Body image and function

Another factor contributing to a negative body image may be the perceived lower functioning in people with persistent pain. All participants reported various ways of expressing negative emotions to cope with their limitations as summarised under the theme “Distress due to impairment and limitations”; which captured feelings related to the degree of limited functioning of their bodies. People with long-term pain often experience distress due to their perceived lower functioning and limits of their body [32], possibly contributing to a negative body image. For example, a patient who experiences reduced mobility due to her pain may perceive and appraise her body image negatively (e.g. “I look old and weak”). Most participants expressed anger in relation to their perceived limitations, which is in line with other pain studies showing that self-directed anger is associated with higher levels of pain [33]. Furthermore, a recent study by de Souto Barreto et al. [34] found disability and reduced function associated with appearance dissatisfaction, albeit higher in men than in women. Another possible pathway by which reduced function and limitation may lead to appearance concerns is that pain may alter one’s appearance unfavourably through the expression of sadness, anger or tiredness, which in turn may be perceived as unattractive by others; a concern that was voiced by some patients here and characterised by the theme “Ambiguous pain communication”. These preliminary findings cautiously suggest that functional difficulties, related distress and negative emotions, in particular self-directed anger, may contribute to a negative body image, which in turn may fuel and maintain pain and dysfunction. At present, our theoretical understanding of body image in pain is very limited, and more research is warranted to investigate the different pathways by which pain-coping, distress of reduced functioning and related negative emotions relate to each other and contribute to body image changes in people with persistent pain.