https://orcid.org/0000-0003-1041-7478
Abstract
Substantial research in symptom perception demonstrates symptoms are influenced by a wide range of psychological factors. However, there is limited understanding of the broader milieu of bodily states within which symptoms exist, including emotions, sensations and “pre-symptoms”. Furthermore, little is known about how bodily states are experienced and translated into symptoms. Semi-structured interviews with 12 participants explored how individuals experience, describe and understand their bodily states in addition to how bodily states are translated into symptoms and how this transition was experienced. Thematic Analysis described four main themes in relation to; i) “The qualia of bodily states”, individuals’ description and understanding of how bodily states “feel”; ii) “Attending to bodily states”, how attention to bodily states could differ between individuals and in certain contexts; iii) “Becoming symptoms”, understanding of normality and its deviations and finding meaning could play a role in transition of states to symptoms; iv)“Reifying symptoms”, how individuals communicated, verbally and non-verbally, abstract lived experience of bodily states to the self and others. A transcending theme, “A series of thresholds” encompassed how bodily states surpass a threshold to become a symptom and the involvement of individual differences such as attention, emotions, expectations and finding meaning. Symptoms may arise when a bodily state surpasses a series of thresholds which may be lowered or raised. There is a critical need to consolidate understanding of bodily states and symptoms within a research context and for greater appreciation of the nuanced, complex and varied nature of bodily states beyond “symptoms”.
1. Introduction
Traditional biomedical models define symptoms as indicative of disease and reflective of biological dysfunction (e.g., pain is a symptom of tissue damage). Within Health Psychology however, theories of symptom perception emphasise the role of psychological factors in the subjective symptom experience, including affect, cognition and external cues (Ogden & Zoukas, Citation2009; Pennebaker & Watson, Citation1991; Spink et al., Citation2018). Furthermore, individual differences in perceptual processes may also be implicated, including how somatic experiences are recognised and appraised (Van den Bergh et al., Citation2017). A substantial body of quantitative research supports symptoms as percepts but is often unable to reflect the nuanced, complex nature of bodily experiences. In contrast, qualitative methodologies allow deeper exploration of lived experiences of symptoms and have been applied to several conditions, including chronic fatigue, colitis and cancer (Bennion & Molassiotis, Citation2013; Newton et al., Citation2019; Söderlund et al., Citation2000). Whilst this research captures some of the lived experience and qualia of symptoms, the focus is often the impact of symptoms on mood, self-esteem and ability to engage in daily activity.
Adding complexity to symptom perception, symptoms exist within a broader milieu of bodily states which may not always become symptoms; states such as tiredness and muscle soreness are ubiquitous with human life and may not always represent or be perceived as symptoms (Hiller et al., Citation2006; Nummenmaa et al., Citation2018). Some bodily states must at some stage be transformed into symptoms, yet research is often unable to capture the experience of bodily states prior to and during the process of translation to symptom. Moreover, quantitative research often utilises numeric indexes or checklists to assess symptoms, which inherently assume the bodily states presented are perceived and labelled as “symptoms” by both researcher and participant and are thus less able to capture more indistinct bodily states beyond a “symptom”. There is also limited qualitative research exploring how individuals interpret and make sense of bodily states and symptoms and is often framed within the context of a specific health condition, such as cancer or cardiovascular disease (Beedholm et al., Citation2019; Heathcote et al., Citation2020). Thus to date, little is known about the bodily states which precede symptoms and how the transformation from bodily state to symptom is experienced (Hinton et al., Citation2008; Nichter, Citation2008). Overall, there is very little understood about the lived experience of processing, recognising and labelling bodily states and symptoms in either quantitative or qualitative domains. Additionally, the literature applies a range of language to bodily experiences, including “sensations”, “states” and “symptoms” which are often conflated. For consistency, the authors will use “bodily states” to encompass all internal experiences (including emotions, sensations and pre-symptoms) and symptoms to reflect those traditionally considered indicative of disease where possible.
1.1. Aims
The current study presents a semi-structured interview approach which aimed to explore the lived experience of bodily states and the way in which these are described, processed, identified and distinguished. The research focused on individual’s experiences of how bodily states become (or do not become) symptoms in a heterogeneous sample including those with and without diagnosed or suspected health conditions or recurrent symptoms. The research did not aim to explicitly capture the impact of a health condition on how individuals make sense of their bodies but instead aimed to explore the experience of bodily states beyond those considered reflective or indicative of a disease.
2. Method
2.1. Design
The current study was a qualitative semi-structured interview study to explore how individuals experience and make sense of bodily states and symptoms. Data were analysed with a Thematic Analysis approach that was exploratory and inductive. Favourable ethical approval was obtained from the University Ethics Committee at University of Surrey (UEC 2018 047 FHMS).
2.2. Participants
A previous quantitative study by the authors, which explored how similar individuals rate their experiences of common physical symptoms and emotions (see Carter & Ogden, Citation2020), asked participants if they would be interested in taking part in future research. 75 participants from the previous study were interested and provided contact details. Of the 75 contacted, 4 took part in the current study. In addition, participants were recruited via researcher networks including social media. 8 participants were recruited via this method and had not taken part in the previous study.
Participants were required to be aged 18 or above, have a good understanding of English language and be able to provide informed consent. Participation was entirely voluntary and non-incentivised. A total of 12 participants were interviewed. Three participants were men and nine were women and aged 23 to 53 (M = 31.5, SD = 10.16). Participants disclosed a number of health conditions and recurring symptoms, including asthma, epilepsy, Crohn’s disease, anxiety and depression. Four participants did not disclose any health conditions, four participants disclosed both physical and mental health condition, one disclosed a mental health condition only and three disclosed a physical condition only (see ). These conditions were self-disclosed by participants and represent those they chose to discuss with the researcher; participants were not required to disclose their conditions.
Table 1. Participant demographics
2.3. Procedure
Participants were invited to take part via email and received an information sheet and completed and returned a consent form prior to the interview. All interviews took place via telephone (n = 11) or via skype audio (n = 1) and participants were debriefed verbally by the researcher and sent an electronic debrief via email. Audio was recorded for both telephone and skype interviews using a digital audio recorder.
2.4. Interview schedule
The interviewer’s questions were guided by an interview schedule; however this was deviated from where appropriate. The interview schedule encompassed the qualia of bodily experiences, including how these experiences were “felt”, understood and communicated. This included how participants came to notice bodily experiences, how they identified and differentiated them, their attribution of meaning and understanding of experiences as well has how they were able to express these experiences. The language used in the interview schedule was purposely vague and broad in order to allow participants to respond with the language they felt was appropriate and reflective of their experiences. A limitation of existing research is the focus on “symptoms” and difficulty in capturing bodily states beyond this label, therefore the researchers aimed to use a range of language and labels during the interviews. For example, bodily states were referred to as “experiences”, “states”, “feelings”, “emotions” and “sensations”, as opposed to exclusively labelling these experiences as “symptoms”.
2.5. Data analysis
Data were transcribed verbatim within a Thematic Analysis approach (Braun & Clarke, Citation2006). Thematic Analysis allowed for exploratory analysis that was inductive and did not subscribe to a specific theoretical or epistemological standpoint. Phase one involved transcription and repeated listening to ensure familiarisation with the data. Phase two and three encompassed the generation of initial codes, coding transcripts line by line to identify meaningful areas and contributing to initial set of themes. The initial themes were reviewed and refined in phases four and five and cross-coding was conducted by both authors and followed by a discussion to foster consensus on codes and themes (Belotto, Citation2018). Discussions were influenced by both authors backgrounds in Health Psychology, particularly symptom perception theories but with a focus on how participants discussed bodily states beyond “symptoms”. The approach to analysis was iterative, and codes and themes could be refined and revised throughout. Phase six involved the writing of the report.
3. Results
Four main themes were identified; “The qualia of bodily states”, “Attending to bodily states”, “Becoming symptoms”, “Reifying symptoms”. A transcending theme was also identified, “A series of thresholds”.
4. Theme 1: the qualia of bodily states
Participants were asked to discuss their “bodily experiences, states, sensations, symptoms and emotions”, with deliberately open language used to enable individuals’ to discuss their unique understanding of these terms. Therefore, this theme encompassed the qualia and experience of bodily states and the ways in which these were described and defined.
4.1. ‘Defining’ bodily states
Participants identified and discussed a range of bodily states, demonstrating a varied approach to “categorising” these experiences. Some discussed everyday experiences or “normal” bodily states.
One of the biggest things is thirst and hunger for me.I tend to feel thirsty a lot (Ppt 6)
In addition to normal bodily states, participants identified tiredness and pain in different areas of the body as common experiences. Ppt 5, who has anaemia, expressed feeling tiredness “quite often”.
In general, I do get tired at certain times (Ppt 11)
Several participants referred to headaches. For one participant who did not disclose any health conditions, headaches were one of several types of painful experiences.
I get headaches, kind of eye strains, back soreness (Ppt 12)
Those with a chronic condition discussed more disease specific experiences.
With EDS [Ehlers-Danos Syndrome] … my hip comes out of its joint which causes numbness and pain. (Ppt 1)
Ppt 4, who has Crohn’s/colitis described symptom characteristic of their condition, such as inflammation of the abdominal wall.
I get a lot of peritonitis so you can kind of feel your stomach kind of gurgling. (Ppt 4)
4.2. The ‘feeling’ of bodily states
Participants’ expressed the lived experienced of bodily states with different degrees of detail and insight. For some, this was in comparison to other bodily states.
Tired headache is a lot weaker and it’s just there and then the caffeine headache … they’re in sort of different places. (Ppt 10)
Some discussed the bodily location of these experiences. Ppt 4, who experienced abdominal pain pertaining to their Crohn’s/colitis diagnosis, expressed they could quickly identify the location of painful sensations.
I get sort of left hand side pain I know exactly where it is, its just below kind of my ribs on the left. (Ppt 4)
Some bodily states were described by more participants and in more detail. For example, tiredness and fatigue were described by several participants as feeling “heavier”, or “heaviness” and “weakness”.
When I’m fatigued it’s weakness. I think I feel a lot more like physically weak … (Ppt 4)
While I’m feeling tired, everything just feels a bit heavier (Ppt 11)
Participants also described bodily states in terms of pain and some described different types of pain such as “achy” or “stabbing”.
Sensationwise it would be um a lot of sort of pain…it’s sort of a tightness most of the time and then a stabbing pain, an almost-stabbing twisting sensation. (Ppt 4)
Ppt 10, who did not disclose any health conditions, described their pain as a “dull ache”
When I say pains… it’s not excruciating or anything it’s more like a sort of a dull ache. (Ppt 10)
4.3. The ‘feeling’ of emotional states
Participants also described how emotional states felt. The experiential component was sometimes grounded in specific areas of the bodies. In particular, the “stomach” or “gut” was often identified and implicated in the felt experience of different emotions. Sometimes participants described this experience in detail with regard to specific emotional experiences such as anxiety.
[anxiety] is very much a gut thing it really does start in the gut it like it’s there and then your mind picks up on it … .almost feels like its rising up and bubbling. (Ppt 10)
The stomach was implicated in both positive and negative emotions and often described as a general “feeling”. Ppt 9, who has eczema and scoliosis, described how positive emotions could be felt in the abdomen.
Happiness, definitely like extreme happiness, you get the kind of stomach feeling (Ppt 9)
For Ppt 5, who has anaemia, the stomach was described in relation to more negative emotions.
With things like maybe sadness or anger it’s probably more of a feeling of heaviness around the stomach area. (Ppt 5)
Heartbeat, head and limbs were also described with respect to the “feeling” of emotions. Participants particularly discussed this with regard to feeling angry.
When I get angry the first thing I realise is you know heart rate straight up… feels like a drumbeat in the back of your head you know right, I’m pissed off. (Ppt 8)
I get tight in my shoulders if I’m angry (Ppt 9)
Feeling emotions could also be described systemically and with reference to the associated behaviours. Emotions were often described with reference to feelings of high or low energy. Some participants made reference to specific emotions while others talked about broader terms such as mood.
If I’m feeling happy … just feel it like throughout my whole body it’s kind of almost like this kind of caffeine feeling I get… sort of like blood rushing through me sort of jittery and I kind of want to run around. (Ppt 10)
Ppt 11, who disclosed dyspraxia and hayfever, described the contrasting energy levels they felt during positive versus negative mood.
So if I’m feeling really great then suddenly that energy comes back and everything is a bit more sharp and clear, whereas if my mood goes to like a bad place then you become a lot more passive and things sort of happen to you and you sort of do the bare minimum to respond. (Ppt 11)
This theme demonstrated individuals have their own understanding of what they considered bodily states and symptom. Individuals described “physical” and felt qualia of these bodily states in terms of location in the body, energy and pain or discomfort. Lived experience of bodily states is unique to the individual and participants discussed this with various degrees of insight.
5. Theme 2: attending to bodily states
The second theme explored ways in which bodily states were attended to and why some were more likely to be attended to than others. Participants discussed differences in the way in which they would attend to bodily states.
5.1. Baseline attention
Participants discussed different “baseline” attention to the body, such as how in tune they were with their body. Some participants referenced giving more attention to their body and ‘listening ‘to it. Ppt 6, who has anxiety, described how body listening was something they “learned”. Similarly, some participants expressed they frequently attended to their bodies.
I feel pretty confident being in touch with my body because I just spend a lot of time thinking about it. (Ppt 11)
Other participants did not express a tendency to focus on their bodily states.
I don’t really spend that much time paying attention to my body, especially if I’m at work because it’s not necessarily what my focus is on. (Ppt 3)
5.2. The impact of novelty
In addition to individuals’ “baseline” attention to the body, there were specific properties of bodily states that increased the likelihood they would be attended to. Sometimes states were more likely to be attended to because they were new and unusual.
If there’s a new feeling I think I switch on to that more quickly because it’s something that’s you know alien … anything that’s like a new sensation would make you think what’s that? Why is that happening? (Ppt 9)
In some instances, attention was drawn to bodily states because they were in a different part of the body.
If it’s in a completely different area that I’ve never noticed before and it’s this new thing then I might be like oh, this is weird, where is this coming from? (Ppt 10)
Participants also suggested bodily states that lasted for longer periods of time were more likely to be attended to. Experiences that didn’t disappear within an arbitrary timeframe were considered more unusual and explored further.
I think what was abnormal for me was because of the length [the state went on] really rather than any of the symptoms. The symptoms were no more severe than anything else. (Ppt 9)
5.3. The impact of emotions
Participants discussed their emotional responses to bodily states, which in some instances could amplify attention to certain states. Participants’ emotional response to bodily states differed; some recognised they felt anxious during these states.
Ppt 4, who in addition to Crohn’s/colitis has anxiety and depression, described how feeling physically ill could impact them emotionally
When I’m physically ill I do get stressed … You could feel that [peritonitis] which obviously made me quite anxious when I wasn’t flaring cause you think you know is this gonna turn into a flare? (Ppt 4)
When emotional responses directed attention to bodily states, these could become more intense and the process could become cyclical, especially when the emotional response was negative.
I catastrophized a bit and I thought my whole left side was numb whereas actually it was the nerve in my leg doing what it often does …it gives me a numb patch on my thigh. (Ppt 2)
Negative emotional responses to bodily states could lead to heightened or directed attention to bodily changes. Furthermore, some participants demonstrated greater insight into how their emotions could impact on their bodily states and how they attended to these.
If you’re in a bad mood, you tend to see things[bodily states] worse than they actually are. (Ppt 12)
This was especially evident to those who suffered with low mood or depression; both Ppt 4 and Ppt 1 suffer from depression and anxiety in addition to physical conditions.
I’m fully aware of the extent to which depression can make you feel physically ill. (Ppt 4)
My mental health really does affect my physical health … my depression when that’s really bad that affects the whole body. (Ppt 1)
Some participants disclosed an absence of or a neutral emotional response to bodily states; they were aware of but not bothered by these states. When bodily states were appraised neutrally, they were less likely to be further attended to and did not “bother” some participants.
I think most of the time if I exercise it produces a symptom or a sensation and I think I just notice and then like let it pass like you would with a thought. (Ppt 2)
This theme demonstrated individuals differed in how they attended to their bodily states as well as the range of factors that increased the likelihood of attending to these states. Bodily states were more likely to be attended to when they were new and novel and if they lasted longer than would be expected. An emotional response, particularly a negative appraisal, could increase likelihood a bodily state would be attended to and could change the individual’s experience of it.
6. Theme 3: becoming symptoms
Once bodily states were attended to, they could be transformed into symptoms or perceived as indicators of poor health. Participants discussed the ways in which bodily states could become symptoms and how their individual experiences could be involved in this process, including understanding of their own norms, expectations and finding meaning with regard to bodily experiences.
6.1. Deviation from the norm
Participants held a sense of their own normality with regard to body and health.
You get used to the normal feelings of hunger or tiredness, you’re so used to those… I might be aware of those but I’m not like concerned because I know what they feel like. (Ppt 9)
Normality could be used as a frame of reference for other experiences.
It’s more like I benchmark it against previous sensations so if, you know, I’m feeling tired in a way I often feel tired then I’m not going to be concerned. If it feels like you know, I can’t keep my eyes open then maybe that would be further that what I usually thought was my own benchmark. (Ppt 9)
Participant’s ideas of their own normality could change to incorporate recurrent experiences of changes in health status. Ppt 4 described how their diagnosis of Crohn’s/colitis changed how they appraised bowel states.
I kind of gotten used to my bowel habits have changed…so for me it’s kind of normal to have diarrhoea whereas for somebody else it isn’t normal. (Ppt 4)
Ppt 11, expressed how their hayfever symptoms were considered part of their “norm” with regard to health.
Suddenly I get scratchy eyes and everything, that’s not sort of so outside my long-term experience … I would say oh this is hay fever, I know that this is what’s going on. So it’s outside the norm of being sort of peak health, sort of not having it, but it’s sort of in my long term health norm (Ppt 11)
Experiences outside of this normality were more likely to be cause for concern and further exploration. Ppt 5 explained how if bodily states did not reflect their existing understanding of their health, for example anaemia and menstruation, this could be of concern.
I do feel tiredness quite often. I think that’s related to my low iron levels … .the only other time I tend to think my body feels different is maybe just before I come on my period, so once again general tiredness, bloating. Anything that wasn’t those two things I think I’d be a bit more panicked about because it wouldn’t be a normal occurrence. (Ppt 5)
Perceptions of normality could influence expectations. Some participants held expectations about bodily states or predicted reoccurrence which could result in their being more attuned when they occurred. Participants may also anticipate bodily states based on this past experience and understanding of their own health. They may be more likely to attend to sensations and considered them symptoms in light of this.
For Ppt 9, who experienced shoulder pain pertaining to scoliosis, they held expectations about when this pain could arise.
I know it like if I’m sitting down or whatever, it starts to hurt me so I think I’m aware of that because I know it’s going to happen so sort of like pre-empt it … I’ve already got a sense that that feeling is going to come at some stage then I probably pick up on it quite quickly. (Ppt 9)
Participants demonstrated anticipating bodily states could bring those experiences into awareness and may influence if attention was allocated to those bodily states.
Like a lot of things tend to flow in and out… you’re aware that they never quite leave and think, okay that’s something that could pop up… I haven’t had a nosebleed in a couple of years but that doesn’t stop me thinking yeah, you know what, if I get to this time of year I’ve just got to make sure I look out for that kind of thing. (Ppt 11)
6.2. Finding meaning
Participants discussed a desire and in some cases a need to be able to attribute causality to their bodily states. This also helped to translate a state into a symptom.
I say I don’t need to make sense of it but at the same time I do try to find causality. (Ppt 10)
Understanding causality was reassuring for some individuals.
I think that what a lot of people are looking for is that when their body does something that they don’t understand that’s frightening…. once they can understand it, even if it’s something that is quite severe and it’s sort of scary and could even be life-threatening… all of a sudden when they do understand its reassuring, because now they can say right well I can put a name to this. (Ppt 11)
Likewise Ppt 2, who has asthma, was reassured by assigning medical causality.
If I know a medical cause or something I feel much better about it (Ppt 2)
Attributing causality, particularly something biological or medical could transform the bodily state into a symptom as it with interpreted within an “ill health” context. This was expressed by Ppt 1, who was diagnosed with a range of health conditions and symptoms, including fibromyalgia, depression and Ehlers-Danlos Syndrome.
If I read something and it comes under the umbrella of EDS [Ehlers-Danlos Syndrome] or fibromyalgia then that makes me fine, I just put it down to them. (Ppt 1)
Participants drew on a range of sources to inform their understanding, including past experiences, experiences of others and online information.
Sometimes I just speak to friends about it and they’re like you know what, I get that a lot as well. (Ppt 10)
I’m very quick on to google … I’m quite quick into looking into symptomology. (Ppt 4)
This theme encompassed the way in which bodily states became a symptom. Participants held a sense of their own normality which was influenced by previous experiences, expectations and understanding of their own health; bodily states that deviated from normality were more likely to be explored further and considered symptomatic. Participants also tried to find meaning in these experiences and attributed causality which often reduced negative emotions implicated in the experience. Assigning a medical cause particularly increased the likelihood of recognising the experience as a symptom or sign of ill health.
7. Theme 4: reifying symptoms
The fourth theme demonstrated the way in which individuals transformed the abstract lived experience of bodily states and symptoms into something which they could understand and communicate to themselves self and others. Language was therefore used as a way to reify the experience of these bodily states following their translation to a symptom.
7.1. Communicating symptoms to the self with an internal voice
Once bodily states were attended to and experienced, they were communicated to their own self. For some individuals this was expressed to the researcher as a type of internal monologue, with participants relaying the internal “conversation” they would have with themselves.
Everyone just started looking really kind of glazed over and I was like oh my god is that how I feel? And then I thought …what if I’m here and I feel sick? (Ppt 10)
If I keep telling myself my head hurts, my head hurts, it probably will start hurting after a few minutes. (Ppt 12)
For some participants this was represented as a sort of sequential process. Ppt 8 did not disclose any health conditions but described how they would make sense of bodily experiences.
I follow like a flowchart process…so I kind of go right is it this or that? It’s that so therefore is this or that from this? And if that makes sense you kind of go from a to b to c to d and step by step, sort of breaking it down in terms of how things are going on. (Ppt 8)
Some participants expressed a sense that their own initial understanding was the most accurate or immediate expression of their bodily states and symptoms. The self could be considered the “expert” with regards to the subjective experience of the body.
You can communicate most of what you feel to a professional or a doctor, someone who would maybe be sort of make sense of the details you would communicate, but a lot of the time I sort of see these things as ultimately the person who’s going to have the best idea of what I’m feeling or like what is going on is me, because it’s all very immediate it’s not sort of relayed information or anything like that. (Ppt 11)
7.2. Communicating symptoms to others
In addition to reifying and communicating to the self, bodily states and symptoms were also communicated to others. Articulating these experiences could be difficult as participants sometimes struggled to both understand and find the language to communicate their experiences.
If you wanted me to explain how I feel it’s very very difficult because. I don’t always know myself, but I know when my pain is worse and when I’m more tired … I think I always stick to the main things being tired and in pain because people can understand those two….can understand yes, something hurts and yes, she looks tired. (Ppt 1)
Furthermore, bodily states and symptoms could be complicated and systemic which could make them harder to articulate. This in turn could impact upon how well others could understand their experiences.
I’ve had or do have quite a severe mental health and severe physical health… there is a lot of crossover and I have hayfever as well and the symptomology which are similar to kind of tiredness and achiness. I do find it hard to pull apart what’s causing what, which obviously can affect your ability to manage it effectively and kind of portray to health professionals because obviously they are going off what you say. (Ppt 4)
Health, symptoms and bodily states were also communicated non-verbally. For example, one participant discussed how she would communicate her pain and distress without language when she felt unsure how to describe it.
I tend to shout a bit. It’s not very helpful for anybody but that’s just how I can express how much I’m hurting without going oh this hurts…I just stomp around and shout. (Ppt 1)
Some participants also spoke about “hidden” bodily states and symptom and not being able to “see” health conditions. This suggests that visible and visual aspects of disease are a form of communicating bodily states as they outwardly signify to others internal experiences of health and the body.
It’s a hidden condition … if you’ve got something on your arm or something you can see it. I can’t see it or anything. (Ppt 4)
With EDS … you can’t look at me and say oh she’s ill. I don’t look it at all and when I’m in my wheelchair they look at me and say why’s she in a wheelchair? (Ppt 1)
7.3. The language of symptoms
Participant’s choice of words to communicate their bodily states and symptoms was varied. Many participants used metaphor to describe what a symptom felt like, including likening increased heart rate to “drumbeat in the head” (Ppt 8) or describing over-exertion and fatigue as feeling as though “run over by a bus” (Ppt 1).
It feels a lot like you’re sort of moving through treacle or like the world is kind of like fogged glass. (Ppt 11)
Ppt 7, who has epilepsy, used metaphor to describe their experience of seizures.
If I have quite a bad seizure it basically rattles your brain, if you can imagine someone coming along and shaking your head 100 times that’s sort of what it’s doing. (Ppt 7)
Some participants chose to use more medical or technical language to describe their experiences and subsequently translating this to more colloquial terms for the researcher. Ppt 1 and Ppt 4, who both have diagnosed physical conditions, demonstrated this.
It’s easier sometimes just to say Crohn’s … it’s kind if a buzzword. (Ppt 4)
It’s a connective tissue disorder … I’m very bendy essentially (Ppt 1)
This theme encompassed the way in which individuals reified the abstract lived experience of bodily states and symptoms, demonstrating the complexity of converting these into something that could be understood and then communicated. This could take place by verbalising the experience to both the self and others, however some non-verbal expression was also important. To verbally communicate bodily states and symptoms, discourse and language was important. Participants’ choice of language included metaphor and medical language which also represented a way to communicate their experiences to the researcher. Participants discussed how communicating their experiences could be challenging and this could impact on other’s understanding. Thus, bodily states and symptoms must first be reified by the individual before they can be shared with others.
8. Transcending theme: a series of thresholds
Participants therefore described their experiences of bodily states and symptoms in terms of “The qualia of bodily states”, “Attending to bodily states”, “Becoming symptoms” and “Reifying symptoms”. Transcending all these themes was the suggestion that in order for bodily states to become symptoms they must exceed a certain threshold. This notion permeates the transcripts and can be seen in the different ways in which the thresholds are either raised or lowered to convert bodily states to symptoms. The idea of thresholds is inherent and embedded within the four main themes which encompass how thresholds can be altered; through definition and feeling; through attention via deviation from the norm and emotions; through finding meaning with a focus on causality; and through reification and communication to self and others.
8.1. Lowering thresholds
Participants eluded to several ways in which thresholds may be lowered, making it easier to surpass and to translate a bodily state into a symptom. This idea could be found across each of the four themes previously described. For example, participants discussed the tendency to focus or attend to their bodies or “look out for” certain sensations. In doing so they could become more sensitive to certain experiences and have higher baseline attentiveness to their bodies. Ppt 9 described this in relation to their eczema.
I’m quite aware of my skin condition and what it feels like and if its tight or its itching I’m kind of aware of that. (Ppt 9)
Increased attention and sensitivity were also implicated in emotional responses to these experiences; heightened awareness of symptoms could lead to negative emotional appraisal. This was expressed by Ppt 4, who has Crohn’s/colitis.
I’m aware that I am hypersensitive to my symptoms… there are red flags for me which are a lot more salient and worrying to me than they would be to somebody else. (Ppt 4)
Furthermore, emotional responses, particularly negative appraisal, could also lower thresholds for symptoms. Overall, lowered mood could draw attention to symptoms but also lead to negatively appraising those symptom, contributing to a perseverative process.
I think you’re just a bit more aware of any symptom that might be there because you’re thinking, on top of this area of my life not going well, I’ve been feeling this and that puts me in a bad mood. (Ppt 11)
Some participants demonstrated an insight into how their emotional experiences impacted upon their bodily states and symptoms. This was particularly the case for those with depression and anxiety.
When I’ve got really bad anxiety, my physical being is just completely different, you know my heart raises, I struggle to eat, I struggle to breathe, I feel more tired … definitely there’s a physical connection. (Ppt 6)
My mental health really does affect my physical health … my depression when that’s really bad that affects the whole body. I’m lucky I know the signs now. (Ppt 1)
Participants discussed how expectations and past experiences could influence how bodily states became symptoms. In a sense, anticipating and predicting experiences could guide attention towards them and lower the threshold to become a symptom. If individuals expected a change in their body, they were likely to experience it as they “looked” out for it- the threshold was lowered.
The thing that I’m most aware of is probably my shoulder because I know if I’m sitting down or whatever, it starts to hurt me so I think I’m aware of that because I know it’s going to happen so sort of like pre-empt it. (Ppt 9)
This was also demonstrated by those with an ongoing or chronic condition; any new sensations were quickly recognised and categorised as a symptom in line with the diagnosis, even when that was not necessarily the case.
Any niggles or pain that you kind of get anyway, even if it didn’t necessarily turn into a [Crohn’s] flare…I kind of attribute a lot of stomach issues you know kind of a twinge or a pain you know, get anxious this is gonna be a[Crohn’s] flare up. (Ppt 4)
Participants therefore described how finding meaning and attributing causality, particularly medical causality, helped them make sense of their bodily states and could turn them into symptoms. Thus, attributing medical causality, such as interpreting a new bodily state in line with a pre-existing diagnosis, may have lowered the symptom threshold for some individuals.
8.2. Raising thresholds
In addition to discussing ways in which symptom thresholds may be lowered, participants also eluded to some ways in which thresholds may be raised thus making it harder for a bodily symptom to become a symptom. Participants discussed the way in which they attended to bodily states and it was suggested some participants may have lowered overall attentiveness to the body or actively dismiss or ignore bodily changes. Some participants suggested that by ignoring or not focussing on some bodily states they could inhibit the experience.
I think if I just don’t think about it [symptom] it doesn’t come up and I don’t really worry about it. (Ppt 10)
For some, ignoring bodily states meant there was less likelihood of worrying about these states and as a result they would be less likely to become symptoms.
I would not start focusing too much on these little things because you start getting irritated and you can, talk yourself into all sorts of health issues. (Ppt 12)
Some participants suggested they may normalise or habituate to certain bodily states which could lead to reduced likelihood of further attending to or finding meaning in these experiences. One participant described how certain states were allocated more attention and further exploration, as opposed to other states, which they made a conscious effort to “feel” less.
I find itchiness a lot harder to think out than I do pain because I can sort of think about it and almost feel it and I’ve sort of trained myself not to feel it[pain] as much. (Ppt 6)
Another participant discussed the belief that many bodily states were necessary and normal and implied an acceptance of these experiences.
I feel like I have a lot of respect for my body in general… it’s so complicated, it’s doing so much stuff… if I have a sensation it’s just doing something it needs to do. (Ppt 2)
Furthermore, some participants discussed how bodily states may be attended to but not explored further. Some states may reach one threshold, such as an attentional threshold, but may not surpass the other thresholds, such as finding meaning or reifying, in order to be translated into a symptom.
Most of the time if I exercise it produces a symptom or a sensation and I think I just notice and then like let it pass like you would with a thought. (Ppt 2)
For some participants, their thresholds may be raised as they do not regularly have bodily states that are translated into symptoms; those who do not have a chronic condition or recurrent symptom. One participant with no disclosed condition eluded to this suggesting that those who have raised thresholds experience fewer symptoms.
I can’t really relate to it myself because I haven’t experienced that [ongoing symptom]. (Ppt 12)
This transcending theme explored the idea that bodily states surpass a threshold in order to become a symptom. This threshold can be lowered or heightened in different ways. The symptom threshold is likely to be lowered in individuals with a tendency to focus their attention on their body, who experience negative emotions in relation to bodily states and who expect or anticipate a symptom reoccurring, particularly in those with chronic conditions or recurrent symptoms. Conversely, thresholds can be raised in those who do not attend to or actively ignore bodily states, normalise these experiences and in those who do not experience recurrent symptom or an ongoing health condition. Thus, this theme suggests there may be individual differences in the way that symptom thresholds function.
9. Discussion
This study aimed to explore the in-depth, qualitative experience of a range of bodily states and elucidate how these are transformed into symptoms. A thematic analysis approach was adopted and there were four main themes; “The qualia of bodily states”, “Attending to bodily states”, “Becoming symptoms”, “Reifying symptoms”. Transcending these four themes was “A series of thresholds” which permeated the data.
The first theme encompassed qualia of bodily states and how individuals defined these experiences. Many bodily states discussed by participants reflected symptoms commonly reported in primary care and the general population, including tiredness/fatigue, headache and stomach pain (Eliasen et al., Citation2016; Hinz et al., Citation2017; Kroenke & Price, Citation1993). Furthermore, participant’s descriptions of how bodily states “felt”, including bodily location, intensity and valence, reflects aspects of bodily states identified in body mapping studies (Nummenmaa et al., Citation2014, Citation2018). Thus, data from the current study reflects some perspectives in the broader literature regarding how bodily states, including symptoms, are defined and experienced.
The theme “Attending to bodily states”, demonstrated general bodily attention, novelty and emotions could impact if and how bodily states came into awareness and were further explored. Participants discussed differences in general attention and recognition of bodily states, suggesting this could impact how they experienced these different states. Individual differences in the perception of internal bodily states is encompassed by the construct of interoception, which can be further understood in terms of differences in accuracy (interoceptive accuracy) and degree to which interoceptive signals are attended to (interoceptive attention) (Garfinkel et al., Citation2015; Murphy et al., Citation2020). The literature recognises individual differences in interoception can result in impaired recognition of or oversensitivity to interoceptive signals and result in differences in perception and reporting of symptoms (Bogaerts et al., Citation2008; Köteles & Witthöft, Citation2017; Schaefer et al., Citation2012). Furthermore, differences in interoceptive abilities have also been implicated in a number of diseases, including chronic pain, Irritable Bowel Syndrome and cervical dystonia, however there is paucity and inconsistency in the literature (DiLernia et al., Citation2016; Ferrazzano et al., Citation2017; Fournier et al., Citation2020). Thus, whilst the findings from the current study elude to the role of interoception in the experience of a range of bodily sensations, the majority of research in this domain is quantitative and focuses on how accurately and frequently bodily states are perceived, rather than the nature of the signals being perceived. Therefore, further research is needed to explore this, particularly studies employing novel qualitative methodology.
Furthermore, participants discussed how emotions, particularly negative emotions, increased attention to and exploration of bodily states. This is coherent with the well-established positive relationship between negative affect and symptom reporting and the exacerbating effect of negative affect on symptoms in line with Somatosensory Amplification theories (Barsky et al., Citation1988; Köteles & Witthöft, Citation2017; Mulligan et al., Citation2014; Spink et al., Citation2018). Additionally, participants with comorbid physical and mental health conditions discussed how their mental health (depression and/or anxiety) could exacerbate the physical symptoms reflective of their physical health conditions. There is extensive prior research highlighting the role of comorbid depression and anxiety in physical health conditions with experimental research demonstrating a link between depression and anxiety and subjective symptom reports (Henningsen et al., Citation2003; Lankes et al., Citation2020; Löwe et al., Citation2008). It can be argued therefore, the link between emotional experiences and bodily experiences are inextricably linked, resulting in complexities in the understanding of unique and isolated effects of physical and mental health comorbidities.
Whilst the current study did not aim to explicitly explore the role of negative emotions or comorbid mental health conditions, the results offer more in-depth and insight into how individuals experience and make sense of the nuanced link between emotions and bodily states. Participants discussed their emotional experiences and perceived impact on bodily states with various degrees of insight, reflective of the construct of alexithymia, which encompasses impairments in recognition, description and communication of emotions and has been implicated in increased subjective symptom reporting (Aaron et al., Citation2019; Bagby & Taylor, Citation1997; Byrne & Ditto, Citation2005; Merckelbach et al., Citation2018). Additionally, previous research postulates individuals can differ in the extent to which they perceive emotions and physical symptom as similar (Interoceptive Crossover) and this may impact ability to differentiate certain experiences as well as recognise how emotions and symptom impact on each other (Carter & Ogden, Citation2020). Thus, the findings from the current study reiterate the importance of cognitive and affective factors in the lived experience of bodily states and symptoms and potential implications for the transformation of bodily states to symptoms.
The third theme, “Becoming symptoms”, demonstrated how bodily states could be transformed into symptoms when they represented deviation from the norm and through finding meaning. Participants discussed what was considered “normal” for their bodies and how this could change to adapt new information, such as a diagnosis of a health condition. Recent perspectives have suggested individuals appraise new somatic information in line with their understanding of the “normal” functioning of their body, however this process can be subject to error, for example when new sensations are mislabelled as indicative of an underlying condition (Van den Bergh et al., Citation2017). Furthermore, the notion of a “normal” bodily state, whereby experiences that deviate from this are given further appraisal, is inherent to several seminal symptom perception models and is often symbiotic with the process of searching for meaning and comprehending disease. For example. The Self-Regulatory Model (SRM) encompasses implicit understanding and beliefs regarding health and illness and Cognitive Adaptation Theory’s three dimensions include “searching for meaning” as critical when responding to threatening health events (Christianson et al., Citation2013; Dibb & Kamalesh, Citation2012; Leventhal et al., Citation1998; Taylor, Citation1983). The SRM also suggests experiences that deviate from the norm undergo a process of meaning-making which in turn can facilitate coping strategies (Leventhal et al., Citation2016). The current study found understanding bodily states and attributing causality could ameliorate negative emotional responses but could increase likelihood of transformation to a symptom. Finding meaning can therefore transform bodily states into symptoms, however it remains unclear how this happens. Additionally, whilst the current study demonstrated participants used their own understanding of normal bodily experiences as a frame of reference, the research was unable to explore how this occurred outside of awareness.
The fourth theme “Reifying symptom”, illustrated how bodily states and symptoms were consolidated through language and communication to the self and others. Participants demonstrated an internal voice as a means to communicate symptom to themselves. It has previously been argued bodily states can elicit “self-talk” and prior to communicating to others, the individual will communicate the experience to themselves via an often inaccessible internal dialogue (Stensland & Malterud, Citation1999). Through internal voice, individuals can consolidate symptoms and create a narrative, drawing on or altering existing illness cognitions, which can result in better understanding and coping (Leventhal et al., Citation2016; Pennebaker & Seagal, Citation1999).
This theme also demonstrated individuals communicated their symptom to others both verbally and non-verbally. Perspectives from evolutionary psychology and medical anthropology suggest individuals communicate symptoms to others to signal a need for care and help and effectiveness of communication impacts assignment of the sick role (Fabrega, Citation1997; Steinkopf, Citation2016, Citation2017). Furthermore, patients who effectively communicate their bodily states to others may also be better equipped to participate in consultation with healthcare professionals, cope with illness and feel more satisfied with their care (Street et al., Citation2009). Communicating symptoms to others is therefore critical to receive effective care from others, including social support systems and healthcare professionals. In terms of verbal communication of symptoms, the theme illustrated how this is reliant on language with participants using different types of language, such as medical versus lay terms. Experimental research within psychology has demonstrated that medical language (versus lay terms) can impact differently on patient experiences, for example by validating the sick role or encouraging help seeking (D’Angelo et al., Citation2017; Ogden et al., Citation2003). Some individuals in the present study also used metaphorical language to communicate their symptom which may reflect an attempt to reify abstract concepts and can be elicited by or elicit corresponding bodily sensations (Hinton et al., Citation2008; Kirmayer, Citation1992). Individuals’ choice of language may therefore reflect that which they identify as the most effective, most representative of their bodily states and symptoms or that which has previously elicited a desired response in others such as comprehension, sympathy or care. Furthermore, this communication may play a role in the transformation and consolidation of bodily states as symptoms.
Participants therefore described their bodily states and the transformation of these states into symptoms in terms of these four key themes. Transcending these themes was the theme “a series of thresholds” which encompasses the way bodily states can be transformed to symptoms when they exceed certain thresholds which can be lowered or raised by a number of factors. Whilst the notion of thresholds is often implicit within symptom perception literature through the emphasis on affective, cognitive and external factors influencing symptom reporting, it is rarely explicit, especially within a context of bodily states that exist prior to surpassing thresholds and becoming symptoms. Models of symptom perception (such as the SRM) are just that, models of symptoms. They are applicable to bodily states that have become symptoms and focus less on the general bodily states that can occur prior to translation into a symptom.
Thresholds have been explored somewhat more explicitly within medical anthropology where it is argued they are culturally defined and must be exceeded for sensations to be transformed into symptoms (Halowski, Citation2006). Furthermore, Hay’s (Citation2008) working model based on ethnographic fieldwork suggests sensations can become symptom when they match individuals’ understanding of vulnerabilities to certain illness, exceed an arbitrary temporal duration and significantly impact upon daily life. After sensations surpass these thresholds, individuals attempt to socially legitimatize symptoms by concurring with others. The model has recently been applied to qualitative findings from a study exploring pre-hospital sensations and symptoms in acute coronary syndrome and demonstrates parallels to theories regarding illness cognitions and the importance of communicating bodily states and symptom to others (Beedholm et al., Citation2019). The current study therefore offers insight into bodily states before they have become (or do not become) symptoms and elucidates individuals’ own experiences of this transformation. Furthermore, the study makes explicit the role of thresholds and suggests how these thresholds vary between individuals to either facilitate or inhibit this transformational process.
9.1. Limitations
There are some limitations of the present study that need to be considered. Primarily, the study included a small volunteer sample of those who were interested in and had previously participated in research within this domain. This may be indicative of a sample of engaged and motivated individuals with a strong narrative regarding their health and symptoms. Interviews were also conducted via Skype audio or telephone, which may have impeded rapport or participants' level of comfort and candor during the interview. The current study also attempted to access an inner dialogue that may be non-conscious or non-verbal, especially if it is internal language of the body. Participants may therefore have struggled to communicate these experiences and processes to the researcher and this communication process may have altered their understanding of their bodily states. This is representative of research in subjective symptom experiences in that by attempting to better understand internal bodily states the experiences may themselves be changed. However, future qualitative research exploring bodily states would benefit from a more rigorous approach. For example, credibility of qualitative results can be explored using tools such a member checking, in which data or analysis is presented to participants in order to check their experiences have been accurately represented by the researchers (Birt et al., Citation2016).
Finally, the study illustrates a fundamental problem with language in this domain of research. Heterogeneous language is used throughout the literature and differs between disciplines, including terms such as “subjective feelings”, “symptom”, “sensations”, “bodily experiences”, “somatic complaints” and “bodily discomfort”. In addition to this, definitions of these concepts are varied and at times vague or interchangeable. For example, some anthropologists with an interest in “sensations” draw on the Oxford English Dictionary definition; “A physical feeling; specifically a mental state resulting from a stimulus operating on any of the senses or from a condition of part of the body” (Oxford English Dictionary, Citation1989). Polymodal sensations (resulting from multiple sensory modalities) identified by these authors include dizziness, pain, shortness of breath and fatigue (Hinton et al., Citation2008). However, authors within other health disciplines identify the above bodily states as “symptoms” or “somatic complaints” (Hinz et al., Citation2017; Kroenke & Price, Citation1993; Kroenke et al., Citation2002). The distinction and definition of “sensations” versus “symptom” is therefore inconsistent and contentious in the literature and arguably at a broader level, between disciplines and fields. Furthermore, it has been argued “somatic complaints” may not always be symptoms (Fahrenberg, Citation1995; Hiller et al., Citation2006). From this perspective, a headache (for example) could be categorised as both a bodily state (or sensation or somatic complaint) below the threshold and as a symptom above the threshold. To reflect these inconsistencies, the researchers aimed to use vague and varied language to prompt and ask questions. This may, however, have led participants to mirror this language. It may also have influenced the analysis process with the researchers trying to impose a more consistent language structure upon participants whose language use was more inconsistent.
The findings of the current study highlights the nuanced and heterogenous was in which individuals experience and discuss their bodily states. Furthermore, the findings suggest that thresholds are implicit in the translation of bodily states to symptoms and highlights a need to better understand how thresholds function and differ between individuals. However, in order to explore thresholds further, it is important to address the complexity and nuance of bodily states and the way in which research is conducted and understood. In particular, there is a need to move beyond “symptoms”. Within traditional biomedical perspectives, symptoms are considered natural fact and unit of meaning in medical disciplines. When medical rhetoric is dominant, states will become symptoms due to the embedding in culture of medicine, and the centring of ‘symptoms (Eriksen & Risør, Citation2014). However, an overreliance on medical perspective can ameliorate understanding of symptoms with respect to their significance, nuance and diversity both in healthcare settings and everyday life.
Furthermore, knowledge and understanding is limited regarding body signs/early symptoms (pre symptoms), especially outside a healthcare/clinical context. There is a plethora of bodily states that never enter the realm of healthcare, they are contained or dismissed, thus the symptoms presented to health care professionals represents “the tip of the iceberg” of experiences/bodily states, such as normal transient changes (Alonzo, Citation1984; Merskey, Citation2004). Although the current research aimed to explore and address “pre-symptoms” under the umbrella of bodily states, further research can only build upon these findings if there is greater appreciation that symptoms sit within a broader framework of bodily states and a shift to focus on what is felt in the body, how the body reacts and how states are developed into signs of illness/distress or alternatively dismissed. Researchers across disciplines would benefit from deeper exploration of the milieu of bodily states and an awareness of the individuals subjective experience beyond ascribed symptoms.
10. Conclusion
The current study identified some of the complexity and nuance of a broad range of bodily states and provided insight into the experience of their transformation to symptoms. In particular, participants discussed how they described, experienced, attended to, made sense of and communicated bodily states and symptoms. Further, permeating the data was the notion of thresholds which were involved in the transformation of bodily states to symptoms through individual differences such as attention, emotions, expectations and finding meaning. In sum, it is argued that in order for bodily states to become symptoms, they must cross a series of thresholds which may be lowered or raised. The current study highlighted a need to better understand how these thresholds function. Additionally, the current survey highlights the importance of consolidating how bodily states and symptoms are conceptualised and researched. There is a critical need to appreciate and explore “pre-symptoms” and bodily states more broadly, beyond the rhetoric of “symptoms”.
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