“A chronic headache and a couple of wonky eyes”: Understanding how strabismus relates to body image and body functionality. A thematic analysis of autoethnographic narratives

Thematic findings

Light sensitivity and chronic headaches are two physical symptoms that I extensively discuss in my stories; however, in the early narratives, I had not made connections between strabismus and the potential physical symptoms. I was aware that I was experiencing chronic headaches and was trying to search for reasons why my body wasn’t optimally functioning:

“I remember starting to take more and more painkillers for headaches, but it was also the same time that I was doing a PhD. I put the headaches down to stress” (Reflection 2)

I suffered from chronic headaches for over 10 years, and it took me a long time to realise that strabismus could be more than just an appearance-related issue:

Things started to make sense. Google was telling me that my condition could lead to photophobia and headaches. . . I was relieved that I had an answer to these health issues that were significantly impacting my life, but I was also angry. Why had no one ever educated me? Why had no one ever told me that my squint would “return”? Why had no one ever told me that it had physical symptoms associated with it? (Reflection 2).

My lack of understanding about the potential functional implications stemmed from my childhood experiences, in which strabismus was positioned as a cosmetic issue: “I remember one particular occasion in which we were sat in a café. The conversation focused on the fact that if I did not have surgery, I might get bullied and might never get a boyfriend.” (Reflection 1). Despite making the potential connection between strabismus and physical symptoms as an adult, it still took a long time to get medical help. When discussing my experiences of pain and discomfort, I often felt like a burden: “I always complained a lot to friends and colleagues, but never specifically about the misalignment, just the associated physical symptoms. I am sure they became desensitised to my complaints.” (Reflection 3).

I also noted trouble with reading and performance at work. When my body doesn’t function like others, it leads to feelings of inadequacy:

Sometimes, I would send emails and reread them 10-15 times, and then after I press send, spot all the typos. I would deliver lectures and see the typos on the slides. I would worry that people would think it was a lack of attention to detail, or I was lazy, but I guess it is just hard to read sometimes. This job has a tendency to make you feel like you aren’t good enough. You constantly question your ability, but also when you look around and see that you aren’t making the same progress as other people or doing tasks as quick and efficiently as other people, you do feel inadequate and stupid. (Reflection 5)

In my reflections I continued to focus on what my eyes couldn’t do and how this would lead to anger, frustration, and a desire to be normal. This poor functioning also led to feelings of isolation:

I am never going to be “normal” regardless of how much surgery I have. I was also frustrated because I know that no one I know can relate to what this feels like. No one I know can understand what it is like to see words jump all over the place when you switch the fixating eye. No one I know can understand what it is like to live in a world with no depth perception or to always be called clumsy. (Reflection 4)

Interpretation and context

This theme highlights how strabismus can be associated with negative thoughts and feelings in relation to body functionality. Like other research on women with visible physical disabilities (Vinoski Thomas et al., 2019), I too frame functionality in relation to what my body cannot do. Strabismus research also documents similar physical symptoms to the ones I experience (Buffenn, 2021). Although patients without double vision (like myself), experience fewer functional or physical difficulties than those with double vision, issues with lighting (23%), reading (38%), eye fatigue (23%), and headaches (23%) have been reported in a small-scale interview study (Hatt et al., 2007). The current study extends these findings by moving beyond prevalence to report on impact and lived experience.

Furthermore, my experiences align with cross-sectional interview data showing that functional limitations can compromise the completion of day-to-day tasks (Hatt et al., 2007). However, as Hatt et al. (2007) focussed on reporting the frequency of health-related quality of life factors, this study extends existing research by providing in-depth insight into emotional reality and the important role that context may play in perceptions of body functionality. Thus, the emotional reality of living with strabismus is not well documented in existing research. Indeed, although research highlights the impact that strabismus can have on career development (Wang et al., 2018), the in-depth emotional implications are overlooked, with this study providing detailed reflections on feelings of inadequacy at work.

Findings of the current study indicate that a lack of education about the lifelong implications of the condition can delay the seeking of medical support as an adult. This is supported by quantitative evidence that reports lack of awareness as an important factor in delaying strabismus care (Al-Omari et al., 2022). However, this study extends the quantitative evidence by highlighting why a lack of education may exist and how awareness is developed. This study reports using online sources to learn more about the condition; however, due to the variability in quality of educational strabismus content online (Ghanekar et al., 2026), it is possible that strabismic individuals may be exposed to misinformation about symptoms and management.

These findings have important implications for future research and practice. Women with physical disabilities have reported how body functionality is an important part of their overall body image (Vinoski Thomas et al., 2019), with the current study emphasising the importance of physical functioning for quality of life in strabismus. Body functionality appreciation interventions have shown initial promise in supporting individuals with visible differences (Guest et al., 2024), and the findings of the current study suggest that functionality support is likely also needed for strabismic individuals. Thes study findings also reinforce the call to promote health education on the lifelong implications of strabismus (Wang et al., 2018), as patients may be seeking support online, with potential exposure to misinformation (Ghanekar et al., 2026).

Thematic findings

In reflection 3, I state: “I would say the cosmetic component was a lesser priority. When I did mention the squint, it was usually in the context of the headaches.” Further to this, when reflecting on my childhood experiences, I wasn’t able to recall a situation in which I felt self-conscious about my eyes, but my medical records clearly state that I was bullied: “She is being teased about the squint at school” (Medical records, dated April 1993). However, in my 20s and 30s I started to feel insecure about the physical presentation of my condition: “I started to physically notice the turn in my eye again. First of all, in pictures and then every single time I looked in the mirror. I started to become self-conscious” (Reflection 2).

This self-consciousness manifested itself in several situations, including when dating:

I was never self-conscious about my eye when dating until one particular date, when the man randomly said, “Have you ever dated anyone with a lazy eye?”. I got flustered. He didn’t look like he had a lazy eye, and I immediately thought that he was asking that because he had clocked my eye and was waiting for a confession. I managed to quickly change the subject but didn’t stop thinking about it. I would have dates where men would say, “oh, you have really nice eyes” and my immediate thought would be, “Are they taking the piss?” “Have they noticed my eye and are just trying to get a confession? (Reflection 2).

But the insecurities were also present at work:

I remember being in teaching situations and in more situations than I can count on one hand, students say things like “oh, do you mean me?” or “I thought you were looking over there”’. Reflecting on this, I don’t think they were ever being mean. It was just genuinely a case of one eye wasn’t looking at them, but in those situations, you become incredibly self-conscious. You become even more aware that everyone in the room is looking at you. (Reflection 3).

It appears that I sometimes can forget about the physical appearance component of the condition, but when I am reminded of it, I experience a lot of sadness:

I clocked myself in the video and immediately noticed how wonky my right eye looked. I have watched this video back, and I see the realisation on my face of the moment when I saw how misaligned my eye looked. In the video, there is an audible sigh right at that point. I looked really sad and then I stopped filming. There are times in your life when you forget about the wonky eyes. After all, you only really see them when you look in the mirror, but those times when you catch a glimpse, and it becomes the only thing you can think about. (Reflection 4).

Interpretation and context

These extracts demonstrate how strabismic individuals can have negative thoughts and feelings about the appearance of their eyes. Previous research shows similar negative feelings about appearance (Hatt et al., 2007) however, in the current study, I reflect in-depth on these negative feelings both in my professional and personal life, highlighting the important nuances associated with contextual variations in lived experience and the significant role that others play in shaping levels of distress. These findings can be compared with research that highlights the self-consciousness that individuals with strabismus experience when speaking in work contexts and developing intimate relationships (Mason et al., 2024). This autoethnography confirms that negative feelings about eye misalignment may develop through socialisation with others, starting in childhood through bullying and extending to adulthood interpersonal relationships. To support this, previous research demonstrates that it is not uncommon for strabismic children to experience bullying, as 40% of young people report peer victimisation (Horwood et al., 2005). However, findings of the current study illustrate how these experiences unfold across the lifespan. Evidence suggests that those with a visible difference may continually anticipate negative reactions from others (Rumsey and Harcourt, 2004), a phenomenon that was echoed in my own experiences of living with strabismus. These findings highlight the emotional reality of living with an appearance that deviates from normal and aligns with research that notes the distress that strabismic individuals experience in relation to physical appearance (James et al., 2011). Importantly, this study examines how these experiences are transient across time and context and are shaped by the reactions from others.

Thematic findings

During a period in my late 20s, I wasn’t aware that I still had strabismus, as I was under the assumption it was corrected with childhood surgeries. However, I was receiving comments from others about the appearance of my eyes:

I never really thought about my strabismus again until my late 20’s. At the time I was dating a man, and one day he asked me, “Oh, do you have a lazy eye?”, I remember saying to him that I used to, but I had surgery as a child and it was fixed. . ..When I looked in the mirror I did not see a misaligned eye, but it was the point at which I became a bit more aware that other people might be able to see something that I can’t. (Reflection 2).

Although I initially underestimated the magnitude of deviation, as time progressed, the opposite occurred, and I began to overestimate the turn in my eye. For example, in my adult clinical assessments my squint was always referred to as “small.” I felt frustrated that the difference I saw in the mirror wasn’t reflected in clinical measurements. This frustration was alleviated when I received a letter from the hospital detailing my referral for surgery:

One thing that stood out to me in this letter were the words “cosmetically larger than it measures”. This was both interesting and reassuring for me because throughout all medical consultations, I had been told that I might not have been suitable for surgery because the measurements weren’t quite big enough, yet, when I looked in the mirror or had a picture taken, the turn looks massive! (Reflection 4).

My misjudgement of the scale of the misalignment continued after my adult surgery:

I was convinced that my operated eye had not changed. In fact, when asked about it in my appointment, I said that I felt it had got worse and was turning out more. The measurements were good though. . .I remember feeling shocked when I heard this because when I look in the mirror, I was still seeing a big misalignment. (Reflection 5).

Whilst I thought the deviation was larger than the measurements suggested, people close to me would always try to reassure me that the squint didn’t look as bad as I thought. However, these kinds of comments were always perceived as insincere:

I would refer to them as my wonky eyes. I would say things like “my eye turns outwards” and it was always met with the SAME responses like, “oh, I never noticed”, “you can’t really tell” or “it isn’t that bad”. It is a weird thing to get these kinds of responses, because whenever I looked in the mirror or took a photo, I immediately see the deviation. In my head, it is massive. How can they not see it? I know that people say these things to be kind, but I am not sure how helpful it is. I much prefer the honesty of a family member, than a friend who tries to tell me they don’t see it. (Reflection 3).

Interpretation and context

These findings highlight the potential importance of the perceptual component of body image, an element that is relatively under-explored in strabismus research. Although researchers understand strabismic individuals can have negative thoughts and feelings about their eye appearance (Mason et al., 2024), the impact of perceptual distortion (i.e. the ability to accurately assess the magnitude of the deviation) is less well understood. Data from this study highlights experiences of perceptual distortion in relation to the magnitude of misalignment, as I move from an underestimation of misalignment in the early narratives, to an overestimation in later narratives. Whilst existing evidence states that objective angle of deviation is not related to psychosocial outcomes (Ritchie et al., 2013), the current study uniquely highlights that subjective perception may be more important and justifies the need for further exploration. To reinforce the importance of perceptual distortion in strabismus, lower health-related quality of life is apparent in those who still report deviations, despite clinically successful surgery (Ji et al., 2020). However, findings from this study uniquely suggest that perceptual distortion is not just relevant post-surgery but is experienced in complex and changing ways over time.

It is also important to understand the emotional invalidation strabismic individuals may experience when discussing perceptions of misalignment, as this was evident within the narratives. Emotional invalidation considers the dismissal, minimisation or contradiction of an individual’s affective experiences (Zielinski and Veilleux, 2018) and can lead to intensification of symptoms (Sebring et al., 2023). This study demonstrates emotional invalidation may be experienced by those with strabismus, particularly when friends and peers minimise the magnitude of deviation and when there is a discrepancy between clinical measurements and subjective interpretation. Thus, experiences of invalidation require further investigation in those with strabismus, particularly as this invalidation is associated with negative affective outcomes and psychological distress (Zielinski et al., 2023). Thus, the findings from this theme suggest that perceptual distortion may be a key part of strabismus lived experience that has yet to be explored in-depth. It also identifies how these perceptions may change temporally and suggests that others may shape the emotional experiences associated with this distortion.

Thematic findings

When thinking about getting medical support, I was conscious not to talk too much about the appearance component and instead focussed on how strabismus impacted my physical well-being. When contacting the Doctor in my 30s I reflected on this: “I carefully crafted the details on the report and felt it very important not to mention anything around physical appearance (again, under the assumption that this would not be taken seriously)” (Reflection 2). Although I initially thought that I wouldn’t receive treatment if I didn’t focus on the functional issues, after being referred to specialists, I felt unheard in relation to functional issues:

In all of those medical appointments, no one really asked me in detail about how the condition impacted me functionally, beyond assessments/questions about double vision. I had, of course, mentioned the headaches, but had never been given the opportunity to discuss them in detail. I was never provided an opportunity to say how the functional aspects were sometimes debilitating and severely influenced my day-to-day activities. . .I was never really asked about how the squint impacted my life, other than a question at one appointment that asked something like “Are you concerned about the way it looks?” (Reflection 4).

I reflected on the internal conflict that I experienced when considering the relative importance of functional versus cosmetic aspects of the condition. This tension is evident in Reflection 4: “Because I have to use my eyes to get through 35+ hours of work a week, using them seems more important than how they look..” However, I also reflected on how my experience of both the functional and cosmetic elements seems insignificant when compared to the experiences of other strabismic individuals that I had met during clinical appointments, who had acquired their squints under more challenging circumstances: “Hearing their stories made me feel stupid, like I didn’t belong. It felt like they had serious issues, and all I had was a chronic headache and a couple of wonky eyes.” (Reflection 3).

Interpretation and context

This study offers a unique contribution by highlighting the possible tension between functional and appearance-related aspects of strabismus, an interplay overlooked in previous research. While studies have documented physical and psychosocial impacts (Hatt et al., 2007), they seldom explore how these components can intersect and diverge in importance depending on individual circumstances. For instance, although I do not experience double vision, which tends to be associated with more functional concerns (Hatt et al., 2007), I place greater emphasis on functional limitations due to their impact on my job performance and identity. This aligns with mixed-method evidence linking strabismus to reduced work self-efficacy (Wang et al., 2018). However, findings from this study suggest that future research needs to investigate the individual contexts of people’s lives to understand the relative importance and impact of functional versus appearance-based components. In the UK, surgical priority may be given to patients with double vision (NHS Commissioning Policy Development Team Bristol, North Somerset and South Gloucestershire, 2023), but this may not reflect the potential variability of impact on people’s lives. Due to a lack of research that captures the in-depth lived experience of strabismic individuals, clinical decisions regarding surgery may be reductive. This highlights the importance of these study findings in telling the “silenced story” of patients’ experiences (Thurston, 2025), with autoethnography having the methodological capacity to capture how functionality and appearance-related tensions unfold across time and context.

Thematic findings

To try and control the impacts of light sensitivity, a symptom I associated with strabismus, I avoid brightly lit environments: “Around my late 20’s I started to notice the light sensitivity issue. I have numerous memories of being in brightly lit shopping centres and within a few minutes getting intense headaches” As a result, I adapted by working in the dark:

People would come into the office and make comments about me sitting in the dark, to which I initially responded that the lights gave me headaches. Most people would make the comment, but it wouldn’t just be once. It would be every time they came into the office. It became annoying (Reflection 2).

The adaptations also continued in the post-surgery period: “Sunglasses became my best friend during this period. Initially they were to disguise the eyes, but I found they gave me some relief from the physical symptoms” (Reflection 5). After surgery, I spent a lot of time on social media and had found content creators with strabismus and felt reassurance in the fact that my avoidance behaviours were like other people: “I have never had any desire to drive because I know I would be awful at it. When people ask me why I don’t drive, my response is always, a) because I am too anxious, and b) I have no sense of distance and space” (Reflection 5).

Interpretation and context

These extracts from the narratives reflect behavioural components of body functionality, that is, strategies that are adopted to manage functional impairments. Behavioural adaptions have not been well documented in existing studies. Strabismus studies have mentioned “adaptions” or “efforts to reduce symptoms” but focus on interpersonal factors (e.g. avoiding eye contact; Hatt et al., 2007). The current study extends this by identifying functional adaptions and avoidance behaviours embedded in day-to-day life, including working in the dark and avoiding driving. This has important practical implications for considering how strabismic individuals could be supported in education and the workplace (e.g. workplace adaptions).

I displayed positive perceptions of behavioural adaptations within my narratives. This suggests that strabismic individuals may admire their body’s capacity for unconscious adaptation and thus may have functionality appreciation. Functionality appreciation can be defined as “appreciating, respecting, and honouring the body for what it is capable of doing, extending beyond mere awareness of body functionality” (Alleva et al., 2017: 29). Thus, while strabismic individuals may experience negative thoughts and feelings regarding functional limitations, behavioural functional adaptations appear to be valued. This adds to functionality literature by illustrating how functional appreciation can co-exist with perceived functional impairment. These findings suggest there is scope to develop functionality appreciation interventions across all domains of body functionality (e.g. cognitive, affective, behavioural and perceptual) in those with strabismus.

Thematic findings

Coping behaviours are evidenced in Reflection 2: “In social situations I was struggling to maintain eye contact because thoughts would pop into my head that they were judging my eye.” In reflection 4, I discuss deleting undesirable photos: “You become pretty good at taking pictures to try and minimise the perceived defect; ensuring you take it at the right angle to try and disguise the misalignment” (Reflection 4) This extended to the photos that I posted online for others to see:

I carefully crafted my dating profile with a combination of pictures of me straight on in sunglasses and a couple of images where I thought my squint was clearly visible. I didn’t want to be accused of being a catfish, but the pictures I posted probably didn’t fully capture my squint. (Reflection 2).

Although strabismus doesn’t stop me from attempting to develop romantic relationships, I have developed coping strategies, as evidenced in reflection 4:

I adopted a new strategy of telling the people I was dating about my wonky eyes pretty much within the first hour of meeting. I suppose it is so I can get in there before they do and be prepared, rather than being caught on the back foot. I feel better prepared to tackle any comments and questions if I am the one who mentions it, and it is usually mentioned in some self-deprecating way. People can’t take the piss out of you, when you have already told all the jokes, right? (Reflection 4).

Behavioural strategies extended to checking behaviours:

In the time leading up to surgery, I became hyperaware of how my eye looked on work Teams or Zoom calls. I know everyone has a little peak at themselves on a video call, but I became fixated on staring at the misalignment and thinking about how awful it looked. (Reflection 4).

Interpretation and context

Unlike the behavioural adaptations associated with functionality, appearance-related adaptions were viewed more negatively and often linked to anticipated judgement from others. Like the findings in other strabismus studies (Mason et al., 2024), behavioural strategies include avoiding eye contact and avoiding photographs. Furthermore, a behavioural strategy of confession was evident within the narratives, which has not been explicitly documented in the strabismus literature. This strategy was to confess my strabismus to romantic partners and use self-deprecating humour. Self-defeating humour is used to develop relationships with others but can have negative impacts on well-being if used excessively (Martin et al., 2003). Conceptually, these behaviours might be considered body avoidance strategies that link with the behavioural component of body image. Body avoidant behaviours are commonly discussed within the eating disorder literature and include the avoidance of situations where body weight and shape might be visible (e.g. wearing clothes to disguise the body; Rosen et al., 1991). The current study indicates that body avoidant behaviours may also be relevant to strabismus but manifest differently (e.g. avoiding eye contact).

This study identified body checking behaviours may also be applicable to those with strabismus. Body checking relates to the tendency of an individual to check and scrutinise their body (Reas et al., 2002), with my preoccupation with looking at my eyes on video calls, being an example of this. Whilst body avoidant and body checking behaviours impact health-related quality of life in other body image literatures (Latner et al., 2012), the implications for those with strabismus are unclear and warrant further investigation. Given that strabismus is associated with higher levels of anxiety and depression (McBain et al., 2014), it is important to consider the well-being implications of the behavioural adaptions evidenced in this study (e.g. body checking, body avoidance and confessions).

Synthesis of findings

The themes indicate that functional and appearance-related components of strabismus are important for lived experience but are largely experienced as distinct dimensions of the condition. The analysis shows that both elements vary with time, context, and social interaction, as does the relative importance of these two components. Whilst both functional and appearance-related consequences of the condition are documented in interviews (Hatt et al., 2007; Kumaran et al., 2019), the temporal, hierarchical and social complexities of these are not easily captured through existing methodological approaches. The ability of autoethnographies to capture the complex dynamics of health has been acknowledged (Li, 2025). Thus, the current autoethnographic approach provides unique insights into the dynamic nature of living with this condition.

The themes demonstrate how the importance of appearance and functionality vary over time and are shaped by interactions with others, including medical professionals, friends, and family. The responses of others appear to influence not only what is prioritised but how the condition is lived and understood. Therefore, whilst functional and appearance elements can be distinguished conceptually, the analysis suggests that others play a significant role in defining what matters, when it matters, and whose voice should be prioritised (e.g. objective clinical measurements vs subjective lived experience). These autoethnographical findings offer novel insights into the shifting priorities of living with strabismus by highlighting the temporal, social, and contextual complexities of the condition.