Visual representations of coping with body dysmorphic disorder: a multimodal hermeneutic phenomenological approach

ABSTRACT

Background

Body dysmorphic disorder (BDD) is a mental health condition characterised by distress associated with perceived defects in one’s physical appearance. Such defects are likely to be very slight or invisible to external observers, making it difficult for people with BDD to convey what they see.

Methods

Participants created artwork representing how they cope with BDD, then completed a follow-up interview to discuss their artwork. Framework for the Analysis of Drawings was used together with Interpretative Phenomenological Analysis.

Findings

Three overarching themes were generated from the analysis, centred around BDD’s fusion with one’s lifeworld, perceptual detachment, and fragmented selves.

Conclusions

We suggest incorporating artwork creation in BDD research and clinical settings may elucidate understanding of “hidden” experiences. Clinicians may find it helpful to reflect on how the distinctive BDD “way of seeing” can infuse not just specific perceptions of the body, but also the person’s wider relationship to the world.

KEYWORDS:

• Body dysmorphia
• creative phenomenology
• interpretative phenomenological analysis
• qualitative psychology
• arts-based research

Introduction

Body Dysmorphic Disorder (BDD) is a mental health condition characterised by a preoccupation with a perceived defect in one’s physical appearance. An individual’s defect is likely to be very slight or completely invisible to an external observer, making it extremely difficult for people with BDD to convey what they see. BDD symptoms are often unrecognised and misunderstood by professionals (Phillips, 2005), meaning people who live with it are left invalidated and ignored. In addition, it can currently take up to 15 years to receive a clinical diagnosis for BDD (Veale et al., 2016). This may be due to a combination of lack of professional awareness of BDD, and a reluctance to disclose symptoms due to the associated shame individuals may feel towards their experiences (Buhlmann et al., 2009; Phillips, 2005).

Our study seeks to advance knowledge of the disorder creatively in order to: (1) enhance professional understanding of how people cope with BDD, moving towards improving diagnosis time and treatment; (2) consider the efficacy of the role of using visual methods as a potential therapeutic tool to support people with BDD in expressing their individual experiences. Published qualitative studies on BDD are scarce (Veale et al., 2016), and this scarcity requires a greater amount of empirical studies to deepen our understanding of the condition. To the best of our knowledge, there are only two published studies that have employed visual methods to explore individuals’ experiences of BDD, and they focus on specific aspects of the disorder. Silver and Reavey (2010) used a combination of photo elicitation and narrative analysis to understand how individuals with BDD view themselves. The study involved 11 United Kingdom based participants aged 20 to 39 years, recruited via the national Obsessive Compulsive Disorder (OCD) clinic and a BDD self-help group. Participants were asked to provide a drawing of themselves and photographs from different periods of time in their lives to discuss in a semi-structured interview. The researchers found that their participants struggled to come to terms with no longer possessing particular aspects of their childhood appearance, making direct comparisons between their past and present selves. Their study gave insight into the tensions experienced by participants through temporal aspects of living with BDD and the self, but did not explore the ways participants managed those experiences in detail. Silver and Farrants (2015) conducted a study exploring BDD participants’ experiences of mirror gazing using photo elicitation. Their study included 10 participants whose ages ranged from late teens to mid-thirties. Participants were recruited via online support groups, BDD websites, and word of mouth. The researchers asked participants to take 10–12 photographs and provide approximately four pre-existing photographs that they considered relevant to their experience of BDD, which were then discussed in a semi-structured interview. Findings from the study indicated participants viewed themselves as aesthetic objects, experienced confusion regarding navigating their “True” selves, and felt trapped by mirrors as a result of the disorder. This suggests the phenomenon of mirror gazing is extremely complex, however, the study focused on one specific manifestation of the disorder, rather than living with the condition as a whole, embodied disorder. As very little is known about how people with BDD make sense of coping with the disorder, it is essential to understand how it manifests more widely within individuals idiographically. Another limitation, identified by the researchers, was that the inclusion of photographs may provoke anxiety in participants, and some of the most severely affected by BDD may have therefore decided not to take part. Visual methods have been used in a range of prior studies exploring personal bodily experiences including managing changes in physical appearance during chemotherapy (Frith & Harcourt, 2005), and communicating bodily processes between healthcare providers and patients in medical settings with drawings (Lyon & Turland, 2020).

Design

We took a multimodal hermeneutic phenomenological approach, combining Boden & Eatough’s, (2014) framework for the analysis of drawings with Interpretative Phenomenological Analysis (IPA; Smith, Flowers, & Larkin, 2022) to explore participants’ meaning-making of experiences of coping with BDD on a bad day and on a more manageable day. This multimodal approach was used in Boden et al., (2018) study in which participants created drawings to represent their experience of a first episode of psychosis, discussed during an interview.

Boden and Eatough’s hermeneutic-phenomenological framework (Table 1) provides cues for exploring and describing the composition and meaning of participant-produced images. Their framework was used to analyse the visual data which participants created for the study. IPA is a qualitative methodological approach which focuses on gaining deep insight into first-person accounts of individuals, aiming to understand what is important to them and how they make sense of and interact with their social world (Smith, Flowers & Osborn, 1997). We consider the inclusion of artwork-creation “a bridge between concealment and unconcealment” (Craythorne et al., 2020, p. 26), helping individuals without lived experience of BDD visually understand what it might mean to cope with BDD.

Table 1. Framework for the analysis of drawings (Boden & Eatough, 2014).

Framework for the Analysis of Drawings
1. Contents: Describe each of the distinct elements of the image.
2. Composition: How are the elements spatially laid out on the page? Are they sparse or dense, are there areas of blank page, do the elements overlap? Is there a sense of repetition, “rhyme”, or pattern?
3. Balance: How do elements interplay? Is there a sense of equilibrium or disequilibrium? Is there symmetry or pattern?
4. Geometry: What shapes are used? How do these interplay together?
5. Materials: Which material has been used for each element?
6. Texture: What are the textural characteristics of each element?
7. Colour: How have hue (colour), saturation (vividness), and value (lightness/darkness) been used?
8. Depth/Perspective: What spatial depth and perspective have been created through space and colour?
9. Temporality/Dynamism: Is there a sense of rhythm or movement? Does the image suggest a snapshot, continuity or duration?
10. Focus: What is the visual focus of the image? What is your eye drawn to?
11. Expressive content/Empathic reaction: What is the emotional tone of the image? What feelings does the viewer have in response (bodily, emotional, memories, images)?
12. Signs/Symbolism: Are there any overt symbols or cultural references included?
13. Style: Does the image “shout” or is it “quiet”, or something in between? Does the drawing seem to imitate or reflect a particular trend or style, e.g. cartoonish, child-like, modern, romantic, pop-art, etc.?
14. Text: Has any text been included, for example a title? Where has this been placed? In what way has it been included? What style, font, capitalisation, etc., is used?
15. Distraction/Noise: Do any elements draw your attention away from the main focus? Is there a sense of confusion or clarity in the image?

Sampling strategy and recruitment

Participants were aged 18 or over and self-identified as living with BDD. A formal diagnosis of BDD was not a prerequisite for taking part due to the significant length of time it can take to be diagnosed (Veale et al., 2016). Taking participants’ experiences as immediately authentic also helped to reduce feelings of invalidation that people with BDD so often experience due to stigma surrounding the condition. Some participants did have a clinical diagnosis, but this was only revealed by the participant if they wanted to share this information during their interview. Participant recruitment began once ethical approval had been obtained from the Aston University Health and Life Sciences Research Ethics Committee (REC number: 1537). In the participant information sheet, participants were signposted to contact their general practitioner or the support organisation Samaritans via telephone if they were experiencing a crisis at the time. The first author also reiterated to participants that she was available to them before, during and after the study if they wished to discuss anything difficult that arose during the artwork creation or follow-up interview. The Body Dysmorphic Disorder Foundation circulated a study advertisement online and via their email newsletter. The Body Dysmorphic Disorder Questionnaire (BDDQ) was used as a tool to screen participants into the study, and this was made available to them via a secure, online questionnaire. The BDDQ asks structured questions about how individuals feel about their appearance and how this may affect their life at the time of completion.

Participants

IPA has a strong focus on the idiographic and therefore requires a relatively small homogenous sample (Nizza et al., 2021) of around 6–10 interviews (Smith, Flowers, & Larkin, 2022) to enable a thorough analysis and exploration of individual accounts of a specific phenomenon. Six participants completed both parts of the study (the creation of a visual piece, then the follow-up interview). Table 2 presents the demographics of the participants in this study.

Table 2. Participant demographics.

Pseudonym	Age at interview	Sex	Location	Interview medium
Aurora	41	F	USA	Email
Denise	39	F	UK	Telephone
Michelle	38	F	USA	Skype (audio)
Petra	27	F	NW Europe	FaceTime (audio)
Thea	32	F	UK	Face to face
Umbra	54	F	Canada	Email

All participants in this study identified as female. Two participants lived in the USA, two in the UK, one in another North-western European country, and one in Canada. The average participant age was 38.5.

Data generation procedure

This was a multimodal study consisting of two parts: An arts-based element and a follow-up interview to discuss the content of the art piece in greater depth. Participants were invited to create a piece of artwork with their own choice of media to represent their experiences of coping with BDD. Each participant received the following questions and optional prompts to help them create their piece:

Box 1. Questions and prompts for image creation

Make an image to help me understand the following:

What does Body Dysmorphic Disorder look like to you on a bad day and on a more manageable day?

Some prompts to consider:

In what way(s) does BDD impact your everyday life? What coping strategies do you have to help you experience more manageable days?

You can use any art material(s) you wish, including (but not limited to) pencils, paint, 3D materials etc. in any way you choose.

Please do not worry if you think the meaning behind your piece is not immediately obvious. You will have time to discuss your piece in more depth during a follow-up interview.

Participants could represent their experiences in any way they felt appropriate. Some chose to present their experiences of BDD on a bad day and more manageable day as one piece of art, and others chose to present them as two separate pieces. After completing their art piece(s), participants emailed a clear scan or photograph of their work to the first author, and a follow-up interview was arranged to discuss the creative work. Spoken interviews lasted 50 minutes on average and were audio recorded with each participants’ consent using an encrypted digital voice recorder, then transcribed verbatim. Participants were given a choice of interview modalities in accordance with IPA’s commitment to supporting participation in situations where articulation may be more difficult (Smith, Flowers, & Larkin, 2022, p. 129), such as when discussing BDD. For example, participants were not required to speak via video-conference or in person due to potential distress associated with the disorder.

Analysis

In accordance with Boden and Eatough’s (2014) method, initial observations of each image were noted by following the items presented in the Framework for the Analysis of Drawings (Table 1) as a guide, then analysed by the first author. Any areas of interest or aspects of the artwork that required clarification generated questions that were asked during the follow-up interview with the first author. Participants were asked similar questions, but they were tailored to the content of their artwork. For example: “In your piece, you included an image of [x]. What does this represent to you?” Once each interview had been transcribed verbatim and anonymised, they were analysed individually at case-level using IPA. All visual and linguistic data were coded by the first author, and then discussed together in supervision with the second and third authors. Both forms of analysis were then cross-analysed in order to generate common themes (Table 3) and are presented in an integrated way throughout our commentary. We now present the pieces participants created for the purpose of this study, and the results.

Table 3. Table of themes.

Overarching theme	Subtheme
Theme 1 – “I don’t really know any other kind of reality”: Integration of BDD with one’s lifeworld	Omnipresence of BDD Imprisoned by BDD
Theme 2 – “She is a monster”: Detachment and distancing of perceived self	Hidden away from the other Harm of the self
Theme 3 – The self as a fragmented entity	Viewing alternative versions of the self Unable to view the body as whole

Results

Theme 1 – “I don’t really know any other kind of reality”: integration of BDD with one’s lifeworld

Participants portrayed through their images, verbal and written accounts a sense of BDD as an inseparable part of their lives, making it extremely difficult to manage. The first theme generated from the data is “the integration of BDD with one’s lifeworld”, which was considered a salient element of the numerous challenges in coping with BDD across participants.

Omnipresence of BDD

All participants reported that the effects of their BDD were widespread and deeply rooted within their lives and everyday experiences. This was exemplified in both artwork and commentary. For example, Denise represented the omnipresence of BDD through the background of her image (Figure 2). Surrounding the figure on the left are numerous words that she attributes to her appearance and self. Despite the words being strongly meaning laden in their own right, the way she has positioned them around her head and upper body is also significant. As Denise explained:

Figure 1. Aurora’s painting.

Figure 2. Denise’s drawing.

they’re just all the words I think to myself when I look in the mirror … or I tell myself all the time throughout the day (Denise)

In the image, she provided a snapshot of some of the intrusive thoughts that she experiences regularly on days that are difficult for her to manage (Figure 3).

Combined with the grey colour palette used throughout the drawing, this section of the image feels suffocating. The lines seem to signify movement, as if they were a spiral, facilitating a sense of rotation around otherwise static, suspended words. The words seem to close in around Denise; her posture seems weighed down by them. They have a scratchy and jagged quality, possibly conveying menace or torment. She stated that she experienced the thoughts “all the time throughout the day” – their repetition was a routine and an integral part of her life, making them difficult to escape and all-consuming.

A number of participants went on to report feeling imprisoned by BDD, further emphasising its fusion with and impingement upon the lifeworld.

Figure 3. Close up of a representation of intrusive thoughts.

Imprisoned by BDD

Imprisonment was a recurrent theme in participant artwork and narratives. In Umbra’s interview, she emphasised the feeling of restriction BDD brings and what this means for her experience of coping.

Living with BDD is like being awake during a nightmare. I am ashamed to show my face to almost everyone so I stay inside. I feel hopeless! I am afraid. I feel trapped. I feel I have no control over my life. I mirror check frequently throughout the day hoping something, anything has changed. I have pushed most of my friends away and spend minimal time with my siblings. I am a recluse but I keep thinking this might be over one day. (Umbra)

Comparing living with BDD to “being awake during a nightmare” may suggest that the experience is similar to that of sleep paralysis. Umbra evoked images of feeling locked in and unable to break free from the fear she feels. Her fear is palpable in Figure 7, through her depiction of a pained expression, clenched fist to her chest, and “cracks” over her body, which she described as “the red lines are the parts of my heart that are broken. The black lines are the parts of my psyche that are broken”. The shame she exhibits towards her appearance contributes heavily to this fear and results in her staying inside, confining herself indoors away from others. Using the words “hopeless”, “afraid”, and “trapped” highlight a heightened sense of fear and restraint that BDD creates in Umbra’s life. It is possible she is also experiencing feelings of being imprisoned by mirrors. She describes checking her appearance in them frequently out of desperation, hoping to see it change. Her strong desire to notice a change in the way she looks could therefore suggest she hopes to break out of a distorted realm inside the mirror as a result of her BDD (Figure 8). Due to BDD, Umbra lives mostly in isolation, limiting contact with members of her family and friends, and this method of distancing oneself was identified as another way of coping with the disorder.

Figure 4. Petra’s sketch (more manageable day).

Theme 2 – “she is a monster”: detachment and distancing of perceived self

In the previous theme, concerns about being surrounded by BDD and having lifeworlds being taken over by BDD emphasise how the disorder became all-consuming within a person’s life. As a result, a number of participants reported feeling detached (or wanting to detach themselves) from their surroundings, from other people and from their perceived selves. The second superordinate theme was generated to represent this sense of disconnection between “real” and perceived self that was apparent across artwork and interviews. This had a profound effect on participants’ wellbeing and amplified the challenges people living with BDD face when trying to manage the disorder.

Hidden away from the other

Through vivid imagery, Aurora portrayed her sense of shame and disgust and how it manifests, forcing her to hide away (Figure 1). She used isolation as a precautionary measure to both protect herself and to protect other people from being exposed to her. This is clear in her presentation of her perceived self in relation to the eyes above her, which she refers to as “society at large” (Figure 5).

Figure 5. Close up of hazardous symbols and “society at large”

The signs and symbols that are positioned around the “monster” or “the gross being” she perceives herself to be are commonplace in extremely hazardous settings. They are arranged in such a way that it appears the monster is being confined and separated off from the world, with the warnings operating as a protective barrier between herself and the general viewing public – the other. The monster is shielding her face with her hands, which could be to obscure her from view or to stop herself from witnessing being subjected to the gaze of the other. As Aurora explained in her interview:

She is a monster. She is repulsive. Bloated and flabby. Exposed. Vulnerable. No one wants to be near her because of her disgusting nature. She is flab and flaw and odor and imperfection and dirty and trash. She is ashamed of being. She is ashamed of being seen. She is ashamed of having to subject anyone or anything to her presence. She, too, is disgusted. But she has no way out of human form and flesh. She is uncomfortable (understatement). She is hiding. She wants to disappear. She wants to isolate completely. She wants to disengage. She doesn’t want to go out for anyone to have to be subjected to her. She knows everyone sees how disgusting and ugly she is. (Aurora)

Here, Aurora referred to herself using the third person, and metaphorically as a “monster”. By referring to herself as a separate entity that embodies her BDD experience, she creates a distance between her objective and perceived selves, which may aid her in her coping. In conjunction with the inclusion and posture of the monster in the painting, the evocative words Aurora used to describe herself (“repulsive”, “flabby”, “disgusting”) emphasise the great sense of shame and self-loathing which she associated with her appearance. Feeling responsible for another person’s disgust would likely contribute to her build-up of shame and feeling the need to remove herself from sight: “She is ashamed of being seen … She doesn’t want to go out for anyone to have to be subjected to her”. By using the phrase “have to be subjected to her”, she further emphasises her view of herself as a hazard or a danger to others around her and her need to protect them from the horror of herself.

The sense of wanting to be away from view was also described by Thea. In her interview, she discussed staying indoors during the summer due to concerns about her appearance:

erm I didn’t like going outside – I just sort of became a bit of a hermit really – just erm facing people and- I dunno – worrying about getting hot and sweaty – and my makeup going down my face – and just generally being a bit- I dunno – unpresentable … just not really wanting to face people (Thea)

Thea described her concern of being considered “unpresentable” to others if she were to go out in public. To minimise experiencing those concerns, she would stay in for long periods. The situation she described regarding “worrying about getting hot and sweaty … makeup going down my face” could be especially intimidating to her due to the possibility of being exposed to the critical gaze of the other. Although Thea actively chose not to include herself in her artwork (“I think that was my first thought actually overall … should I do a self-portrait? – and I decided against it”), she conveyed a powerful message about modern society and standards of beauty. The outer columns of the triptych (Figure 6) are made up of characters with similarly enhanced facial features and they all appear to be wearing the same style of makeup. It is possible that her concerns about not being able to manage her appearance may be part of a wider issue surrounding current perceptions of beauty and acceptance of a particular standard of appearance. This resonates with recent ethical explorations into the role of beauty standards within society, particularly “the contemporary ideal of beauty” (Widdows, 2020, p. 19) and how people can be judged against it as a way of measuring “successes or failures according to the extent they conform to it” (Widdows, 2020, p. 19). This judgement may be cast towards the self as well as others and may reaffirm the insights Thea conveyed through her artwork.

Figure 6. Thea’s collage of drawings.

Figure 7. Umbra’s mixed media piece (‘Agony’; BDD on a bad day).

Figure 8. Umbra’s mixed media piece (‘Hope’; BDD on a more manageable day).

Harm of the self

Some participants reported engaging in self-harm as a way of coping with the effects of BDD. Denise visually represented her experience of self-harm through her drawing (Figure 9).

Figure 9. Close up of a depiction of self-harm in Denise’s drawing.

In this section of her sketch, Denise depicted a jagged and deep looking cut on her wrist with a razor blade positioned nearby. It is clear that her injury is fresh from the pooling blood on the table. She showed herself holding a mirror and viewing a historic photograph of herself from a time when she considered herself to be fit and healthy, running a marathon. The inclusion of the photograph and hand-held mirror suggests that she may be drawing comparisons between her past self and current self. When asked to elaborate on this aspect of her image, Denise shared:

erm that’s when I have really low bad days … I’ll do that [cut herself] as just a way of (pause) sort of coping with things and punishing myself I suppose – and then once I’ve done it it’s like a- a visual reminder and the- ‘cause I can feel it as well – the pain (Denise)

In this extract, a feeling of Denise’s hatred of her own appearance comes through particularly strongly here. She describes physically punishing herself for her perceived appearance. The method of coping she describes provides her temporary catharsis and a lasting visual memory of the pain, which could be viewed as a permanent punishment towards her body; a perpetual marker of its perceived inadequacy and deficient nature. It is interesting that she uses the conflicting words “coping” and “punishing” to describe her experience of self-harm and how she uses it to manage her feelings. This contrast could be reminiscent of the separateness she experiences between her objective self and perceived self (her objective self may cope by punishing her perceived self). Michelle also discussed self-harm as a way of coping with her BDD and, like Denise, did not perceive it as a maladaptive experience for her, describing it as soothing.

I guess- some people see it as similar to self-harm but it’s not – you know – it’s not meant to be self-harm because the purpose behind it er ironically is trying to better yourself – it’s just going about it in such the wrong way … I think maybe it is a feeling of helplessness – you know – not- not knowing- what else can I do to like soothe this feeling? – erm you know – to make it like okay or tolerate erm having this thing that is- that feels imperfect – just having it there (Michelle)

Here, Michelle highlights an important point about the perception of violence towards the self, regarding coping with BDD. She frames self-harm as an outlet, or a channel, for making sense of feelings that are very complex and difficult to manage despite it being destructive. She explains that some actions, for example picking her skin (depicted in Figure 10), are implemented in order to improve her appearance and the resulting damage is a secondary factor. The words “helplessness” and “imperfect” illustrate the absolute desperation that drives her to engage in behaviours that are maladaptive. This sense of indirect or unintentional harm was present in several participants’ accounts, and was powerfully illuminated by Denise:

I don’t go to the doctors and stuff like if- if I needed a- like smear tests and things I don’t- I won’t go for those ‘cause it means getting undressed … I think what my parents worry about – they know that I don’t go for these things and they worry that I would cover it up and hide it … and that’s when it- it gets- something that people think is just like a little vanity thing ends up life threatening … and they- they don’t understand how- how I could be so concerned about taking some clothes off if I might have cancer – but to me having cancer is more acceptable than getting undressed – and nobody understands that – they think I’m mad (Denise)

Figure 10. Michelle’s drawing.

In her interview, Denise wanted to highlight how debilitating BDD is to her physical health in order to help others, who may not have experience of the condition, understand its effects more fully. She discussed avoiding potentially lifesaving health checks such as cervical screenings due to the requirement of exposing her body and feeling intolerably uncomfortable in doing so. Her readiness to accept possible illness and consequent death is distorted and bolstered by her need to hide her body. Additionally, she may feel responsible for the concern her parents feel about her avoidance of health checks, which could further contribute to a sense of guilt or added pressure on top of her own personal fears. She drew on her own experience of people’s misconceptions of BDD – “something that people think is just like a little vanity thing ends up life threatening” – to stress that people with little knowledge of BDD may underestimate the gravity of the condition.

Theme 3 – the self as a fragmented entity

A key aspect affecting participants’ coping with BDD is experiencing the self as a fragmented identity. This was foregrounded in participants’ artwork and was referenced in the majority of verbal accounts. A particularly disconcerting experience conveyed in the work was seeing alternative versions of oneself.

Viewing alternative versions of the self

In Aurora’s painting, she depicted two distinct versions of her physical self.

In Figure 11, she portrays herself as carefree, with a standard, human form. She is engaging in nourishing activities such as painting, dance and yoga; activities which help her BDD experience feel more manageable. Figure 12 depicts Aurora in “monster” form. This stark disparity between the two depictions of the same person emphasises the extreme and fluctuating nature of the fragmented self in BDD. Aurora explains the experience of being exposed, unpredictably, to multiple versions of her own body:

Figure 11. Aurora’s representation of her body on a more manageable day.

Figure 12. Aurora’s representation of her body on a bad day.

For me it’s like constant gas-lighting. It’s like being stuck in a fun-house but you never know which mirrors are the funhouse mirrors and which are not set up to “trick” you or distort the image. Everything can be distorted all at once without warning. One morning I can “look” a certain way and within an hour, everything is disproportionate, distorted, and amplified again. It’s scary to not know what is real and it is scary to begin believing that what is real is that YOU are WRONG. The flaws that seem so amplified and apparent are what the “reality” is … . (Aurora)

Comparing this phenomenon to “constant gas-lighting” and “being stuck in a fun-house” places emphasis on the dark and menacing nature of the disorder. The trepidation she associates with being unaware of which “self” will be presented further fuels the consistent level of uncertainty Aurora feels towards her appearance and the permanency of her distressing situation. She treats her own perception with suspicion, and the lack of trust in what she sees may contribute to the sense of fear she experiences. This leads her to doubt the authenticity of her own reality: “It’s scary to not know what is real”. Another factor that worsens this experience for her is the unpredictability and volume of the distortions presenting themselves to her: “Everything can be distorted all at once without warning”. Some participants revealed that the volume of distortions they are exposed to can make it difficult to view their body in a unified manner.

Being unable to view the body as a whole

Michelle depicted her experience of skin picking in her artwork in order to convey its significance with regards to her coping with BDD (Figure 13). The figure she presented can be seen viewing itself in a mirror via multiple perspectives.

Figure 13. Close up of asymmetric figure checking and picking skin in a mirror in Michelle’s drawing.

She explained what she sees as she focuses on specific aspects of her face in an attempt to make sense of the whole.

if I am focused on my pores and any imperfection I can find – even if it’s not even there – then I don’t even really see my face – I just see the surface – erm and I don’t even think about it being me really – erm however if I back away and I take a minute to look at my face I think I have a fine face – you know – I’m not- I’m not- I don’t look at myself and think that I’m not a good looking person – it’s a very strange thing – you know – it’s like I just wanna get in close and find out what’s wrong – erm even if it’s not even there (Michelle)

Michelle experiences times when she is heavily preoccupied with perceived flaws on her skin. The preoccupations make it extremely difficult for her to view herself in a unified way. When she is drawn into assessing those preoccupations, evaluating her skin as being part of her body becomes problematic: “I don’t even think about it being me really”. The dissociation between her skin and body suggests that BDD can profoundly damage the cohesive relationship between the corporeal body and one’s association with it. This was also apparent in Petra’s account of her experience:

it might sound kind of strange but I have this sort of er … impression that my left side of my face is just (pause) much uglier and deformed in a way – and I know it isn’t but … I can sometimes worry about like the shape of my eyes (Petra)

Like Michelle, Petra described an awareness that the version of herself she perceives differs from her objective self. She engaged in similar atomistic views of specific aspects of her face (left side and the appearance of her eyes), and this is reflected in her drawings (Figures 4 and 14). In Figure 4 she depicted layered vectors over one of her eyes and on top of her face, whereas Figure 14 represents a visual discrepancy through shading.

Figure 14. Petra’s sketch (bad day).

Discussion

This study presented a wide range of experiences representing different levels of coping with BDD. Our initial aim was to understand what people’s images told us about their experiences of coping with BDD and how the combination of image-making and discussion helped people to express their experiences. Additionally, the images and accounts garnered an in-depth ontological exploration of BDD including what it means to live with and to be with BDD. The richness of the artwork and accompanying commentaries participants provided showed how the experience of living with BDD can oscillate from one extreme to another.

The majority of participants in this study framed BDD as an omnipresent entity that has shaped their lives, surrounding them and impeding their everyday actions. A study by Brohede et al. (2016) identified that a salient aspect of living with BDD was “becoming the disorder”, as informed by the verbal accounts of participants. This theme incorporated widespread issues in the daily functioning of participants such as experiencing frequent emotional distress, self-hate, “crying for hours, being sad every day, and feeling grief for having destroyed themselves” (Brohede et al., 2016, p. 194). These highly emotional experiences further demonstrate how people living with BDD often embody the disorder and observe the process of it becoming fused with their everyday life experiences. Looking at this idea of omnipotence through a phenomenological lens, it becomes apparent that, for some, BDD could be considered a constant background phenomenon that those living with it are continually aware of. There is an ongoing tension between the actual self and perceived self distorted by BDD, creating a very complex and disquieting atmosphere and discord between self-other awareness. For some participants, this tension can be felt between multiple versions of the self and the world as demonstrated in their artwork and accounts. Trigg (2020) argues that atmosphere is important to consider when taking into account shared emotion, and it is possible that the shared emotion he describes could be used to understand the fusion of BDD with the lifeworld. He states: atmosphere can play a critical role in generating shared emotion thanks to its structure as a phenomenon that is both diffused in the air and grasped under the skin. (Trigg, 2020, p. 4)

With regards to the way BDD immerses the individual, it could be viewed as a phenomenon that infiltrates the lifeworld and permeates the skin, the barrier between the self and the world. Phenomenology views person-and-world as mutually constitutive, but it is striking in these data that the BDD way of seeing and experiencing the body is infused in also seeing and experiencing the self, and the world.

For some participants, their ability to cope with BDD was framed as a social issue as well as an individual issue. The physical and psychological detachment and distancing of the perceived self was a concept that participants represented visually and discussed frequently in their accounts and was often linked to their experience of other people. An example of this concept came through particularly strongly in Aurora’s painting and interview data. The hazardous signs and symbols she included in her painting, along with the positioning of herself as a monster, illustrate her desire to both protect the other and also protect herself from the other. In previous research on the relationship between BDD and mirror gazing (Silver & Farrants, 2015), participants described themselves as inanimate creatures and monsters (“I look like a monster I just don’t feel sort of human”) and, like Aurora, felt that showing themselves to other people would cause them to feel offended and generate other negative emotions within them. This might suggest that people with BDD hold themselves accountable for their image and how it may negatively impact the public, further contributing to a sense of guilt and shame. On a physical level, Aurora described hiding away and corporeally removing herself from the other. In doing this, she shields herself from the gaze of the other and simultaneously prevents them from being exposed to the monstrous version of the self she perceives. This protective mechanism that serves two purposes could be interpreted as an example of double bookkeeping, in which one endorses attitudes that are in conflict with their delusions (see Bortolotti et al., 2011).

Conflicting ideas that serve a protective purpose are also presented through Aurora’s statement “It’s scary to not know what is real and it is scary to begin believing that what is real is that YOU are WRONG”. To elaborate on this idea further, we find it helpful to draw upon the psychological concept of the doxastic shear pin (McKay & Dennett, 2009) with regard to considering delusional beliefs. The doxastic shear pin is a metaphor that represents a misbelief that is designed to protect an individual (McKay & Dennett, 2009). It is based upon a shear pin mechanism, which is intended to protect and prevent the breakdown of machinery by destructing itself instead. Aurora points out that she fears acknowledging that her perceived reality may be wrong, and it is this uncertainty that causes her significant distress, therefore she destroys herself rather than destroying the other people around her.

Being unable to view the body as a whole, integrated system was another difficulty raised by participants with regards to their experience of coping with BDD. Thinking about this phenomenologically, Merleau-Ponty put forward the idea that we experience the world through the vehicle that is the body. Participant data suggest that people with BDD acknowledge all elements of the vehicle (the body) are there, but they are not working together harmoniously as they should from the perspective of the individual. This was demonstrated by Michelle, who described only focusing on the surface of her skin during the examination of her reflection, rather than her whole face. Studies have found that people with BDD often view themselves as an aesthetic object, or an object of examination or appraisal (Silver & Farrants, 2015; Veale & Riley, 2001). Participants have shown that this close and individualistic viewing of particular bodily features could be viewed as an introspection or reduction of the existence of one’s body – reducing the body to its constituent components.

Limitations

This visual arts-based empirical research study focused purely on adults’ experiences of coping with BDD, but there are other aspects associated with the disorder that should be considered in future research. For example, it may be useful to explore individuals’ experiences of treatment and help seeking for BDD, as well as considering how younger people cope with BDD. With regard to the methodological approach, although the use of artwork generation and interviewing provided rich insight into the BDD coping experience, it should be acknowledged that such methods may not be accessible or feel comfortable for everyone. Researchers may wish to consider offering alternative visual modes of participation, such as body mapping (Boydell, 2021), or relational mapping (Boden-Stuart et al., 2021).

Conclusions and implications

This study explored six individuals’ experiences of coping with BDD using a multimodal hermeneutic-phenomenological approach. We identified ways that artwork can be used to transcend language and convey meaning that might not otherwise be captured by traditional methodologies for qualitative data collection. The images participants created show how harrowing BDD can be and suggest that there are many layers of exploration to consider when addressing an individual’s concerns regarding BDD in both research and clinical settings. Our findings highlight the potential of incorporating image creation as an option in such settings where discussions around self-perception regarding BDD may take place. Facilitating image creation can help people living with BDD portray what is not visible to an external viewer, thus moving towards a shared understanding of what is “seen”. Additionally, using a “character” or third-person depiction of their BDD experience (as several participants in this study did) may aid with discussing potentially distressing aspects of the disorder that could be difficult to discuss from a first-person perspective. For people with BDD, there is an overwhelming sense of uncertainty present in their lives with regards to navigating an oscillating and unstable physical appearance. This is an exclusively private phenomenon, only experienced by the individual’s body and, to others, it is therefore a concealed aspect of one’s perception. The perceived distorted body is detrimental to one’s interaction with the world. Some distortions described were so highly concentrated that individuals did not consider themselves to have a human form, describing themselves as monsters and grotesque creatures. These horrific self-perceptions evoked a deep sense of shame and disgust within the individuals in this study, leading them to remove themselves from view by camouflaging their appearance or physically hiding away from others to avoid their gaze. Using imagery in combination with the verbal and narrative data participants provided in this study has presented unique insight into the coping experiences of those living with BDD. This mode of data collection also proved effective for helping people express some of the difficult and intangible experiences that can unfold as part of BDD’s manifestation.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.