This article draws on findings from doctoral research centring the perspectives of people living with IH (7). The research positions people who live with IH as experiential experts, whose embodied knowledge of the condition constitutes legitimate expertise. Following Couser (25), the study sought to move beyond the expression of illness experiences to actively reclaim the lived experience from medicalisation. The central research question asked, ‘In what ways does the lived experience of the IH community expand/or complicate the existing medical model of IH?.

The study adopted a facet methodology approach (26), recognising that the IH experience is “not only lived and experienced but is multi-dimensional, contingent, relationally implicated and entwined.” Situated within critical disability studies, the research employed ‘disability as method’ principles (27, 28) to intentionally incorporate the lived reality of chronic illness into the research design, enabling first-person perspectives to critically analyse the systems and practices embedded within IH’s medicalised meta-narrative.

Data generation employed two complementary methods. A qualitative survey conducted via Qualtrics in 2022 included 16 open-ended questions designed to gather narratives about lived experience, identity, and knowledge. Questions focused on social and cultural aspects of the IH experience, intentionally avoiding medicalised framing and addressing the research gap in personal and environmental factors identified by Lehman (20). Participants were recruited from 40 IH-specific Facebook groups and were required to be adults (18 years or over) with, or seeking, an IH diagnosis. The survey engaged 563 participants across 37 countries, including 16% from non-English-speaking backgrounds, with participants ranging from recently diagnosed to more than 10 years post-diagnosis.

The primary method of inquiry was an asynchronous, Facebook-mediated research discussion group (‘IH Voices’), with 101 participants drawn from survey respondents. This approach deliberately replicated the online knowledge-sharing spaces where the IH community already gathers. The asynchronous format accommodated crip-temporalities and energy limitations characteristic of this population, aligning with scholarship on online methods for geographically dispersed chronic illness communities (29–31). Participants were engaged as knowledge-holders rather than research subjects, with discussion topics shaped by their contributions and priorities. Table 1 summarises participant characteristics across both phases of data collection.

The study’s focus on social, environmental and relational aspects of the lived experience meant that survey questions intentionally avoided weight-based narratives. Despite this, two-thirds of respondents raised weight unprompted in their open-ended responses, signalling its salience in shaping their experience. This participant-led emphasis informed subsequent group discussions about how profoundly this dominant narrative impacts the lived experience of IH.

Analysis employed collective narrative enquiry to identify shared patterns across individual accounts, attending to diversity of experience and the collective understanding. The sample and data size were guided by the notion of information power and “being greedy in the search for data, knowledge and insight” (26, p. 83; 32). The large and geographically diverse participant group enabled examination of whether IH experiences varied across healthcare systems and socio-cultural contexts. Notably, despite this diversity, the study found remarkable consistency in lived experience, countering assumptions that disability is too heterogeneous to support collective understanding.

Miranda Fricker (33) concept of epistemic injustice frames the analysis of participant accounts, attending to how their knowledge is received, dismissed or devalued within healthcare encounters. Testimonial injustice occurs when a speaker’s credibility is undermined due to prejudice. For pwIH, this is experienced when their narratives are dismissed or doubted due to weight-based or other medicalised assumptions. Hermeneutical injustice arises when interpretive resources fail to help make sense of their experiences. For those with IH, the dominance of the weight-based narrative leaves little space for alternative understandings of their condition. They counter this by participating in a large, global community of practice on social media that develops their experiential expertise (7, Chapter 5).

This study received ethical approval from Curtin University (HRE2022-0037). All participants provided informed consent. Survey participants could remain anonymous, while discussion group members could opt to be acknowledged by name as experts. Due to the sensitive nature of health experiences, particular care was taken to support participants’ well-being throughout the research process, reflecting the ‘disability as method’ principles embedded in the study design. Participants were provided with a comprehensive participation guide that included contact details for local mental health support services and direct contact information for the researcher. Content warnings were provided for all discussion topics, and participants were encouraged to engage only with topics they wished to contribute to. The sequencing of topics was also intentional, with emotionally demanding topics (such as weight) followed by lighter discussion. Regular check-ins with group members were conducted throughout the discussion to monitor and support members’ well-being.

Research quality was addressed through practices aligned with critical qualitative inquiry. Reflexive journaling supported ongoing examination of assumptions and interpretive choices. Check-ins with participants throughout the analysis ensured that interpretations accurately reflected their perspectives and incorporated alternative viewpoints. Extensive use of participants’ voices in reporting allows readers to evaluate the relationship between data and interpretation. All participant quotes are italicised throughout.

The researcher is a woman of larger body size who lives with IH and has been an active member of the IH community on Facebook for eight years. This emic positioning is methodologically aligned with the study’s approach. This insider position enabled access to community knowledge, built rapport and trust with participants, and supported deeper engagement with participant narratives and the nuanced interpretation of the data (34). The potential for over-identification was addressed through reflexive journaling, regular participant check-ins to test interpretations, and supervisory discussions throughout the research process. This approach aligns with crip-authorship principles (35), which position disabled people as authorities on their own experiences. This disability justice approach troubles the medicalised narrative by centring experiential knowledge that is systematically excluded from IH research and pushing back against the epistemic oppression that positions experiential expertise as less-than.

The biomedical narrative surrounding IH consistently presents weight as a primary causal factor, directly shaping clinical practice, where epidemiological correlation is readily mistaken for individual causation. Participants described their doctors as hyper-focused on weight, with clinical encounters often reduced to discussions of body size regardless of presenting concerns. This reflects the broader medicalisation of fatness, where higher bodyweight is viewed as pathological and weight loss as treatment. Such medicalisation is underpinned by what Metzl and Kirkland (36) term ‘the new health morality’, a neoliberal discourse that positions health as individual responsibility and places moral burden on people to discipline their bodies accordingly. Within this framework, fat bodies become symbolic of moral failure and, in line with the clinical gaze, produce a hierarchy of bodies in which those deemed fat are placed at the bottom (37–39).

In IH specifically, this is experienced as “synecdochical stigma” (40) whereby the whole person becomes reduced to their body size. BMI functions as both a diagnostic marker and treatment determinant, yet the measure itself is riddled with gender and racial bias (41). This centrality in IH classification reduces complex presentations to a single metric, blaming health conditions on weight while ignoring environmental and systemic factors. When a person with a stigmatised body encounters the clinical gaze, they encounter invalidation through treatment decisions shaped by weight bias and the dismissal of patient knowledge that contradicts weight-focused assumptions.

The persistence of weight-focused treatment despite contradictory evidence reflects the normalisation of weight bias in clinical practice. Just as disability scholars have shown how medical authority shapes understandings of disability (11), fat studies scholars have demonstrated how medical discourse constructs fatness as inherently pathological (14, 15, 42). In IH, these frameworks converge: weight-focused treatments are prescribed regardless of individual circumstances or contradictory evidence, and epistemic selectivity systematically undervalues experiential knowledge while clinical assumptions remain unchallenged.

Challenging the weight-causation hypothesis requires engaging with both the contradictions within the medical literature and the experiential knowledge of people living with IH. Together, these forms of evidence align to challenge dominant assumptions and offer alternative explanatory frameworks. Treating correlation as causation has led to potentially harmful practices across healthcare (43). In IH, this association translates into clinical certainty that shapes both diagnosis and treatment.

While dominant discourse frames weight gain as causative and treatments subsequently prioritise weight loss, significant contradictory evidence exists within the research literature. While most pwIH have a BMI of 30 or above, many women of larger bodysize do not develop IH, and some individuals develop the condition with a BMI between 18 and 25 (44, 45). Even within the medical literature, language remains cautious: incidence rates are said to have ‘mirrored’ and ‘risen in parallel with’ (46), ‘correspond to’ (3), and ‘correlate with’ (47) population-level BMI trends. This is the language of association, not causation. Yet this cautious research language has been translated into confident clinical practice, with epidemiological associations reinforced and eventually treated as fact, even as proponents of weight-focused treatment acknowledge that the weight threshold for developing IH is unclear and weight is not a reliable indicator of visceral fat (48). Participants recognise this problem, and while they do not deny the importance of weight for overall health, with many acknowledging the general benefits of weight management and physical activity, they challenge the simplistic framing of weight as the cause and reliance on weight loss as the primary treatment, despite the evidence for this approach remaining uncertain:

Geographic and ethnic differences further challenge the weight-causation hypothesis. If weight were simply causative, we would expect uniform patterns across populations; instead, BMI of 30 or over appears less common in Asian clinical groups and is rarely the primary risk factor in the Indian subcontinent (49–51).

Participants’ observations about temporal patterns were especially significant. The medical literature describes weight gain in the twelve months before diagnosis as a ‘risk factor’ supporting causation. However, participants interpreted this same observation differently:

This represents a fundamental disagreement about the same observed phenomenon. Medicine and patients agree that weight gain often precedes diagnosis; they differ in their interpretations. The biomedical narrative reads this as causal evidence, while experiential knowledge suggests weight gain may itself be symptomatic of underlying dysfunction. Significantly, this experiential interpretation is supported by the IH literature. Hannerz and Ericson (52) found that body size was not the cause of IH, suggesting instead that raised intracranial pressure may be the primary driver of weight increase, with higher body weight acting as a secondary factor in pre-existing IH. This inversion of the assumed causal direction aligns closely with participant accounts. Participants consistently reported weight gain occurring alongside other symptoms or developing quickly after diagnosis, with many noting they had a BMI of 25 or under prior to symptom onset. As participants reflected,

Participants also identified how the condition creates barriers to the very intervention prescribed as treatment:

The medical literature reflects similar uncertainty about weight loss as treatment. BMI at presentation does not appear to influence long-term visual or headache outcomes, with patients with BMI between 18 and 25 having outcomes similar to those with higher body weight (45). The only randomised controlled trial comparing bariatric surgery with community weight management found no statistically significant differences in IH-specific outcomes between patients who achieved significant weight loss (23kgs) to those with minimal weight loss (2kgs) (47). As Friedman (53, p. 678) observed, this raises fundamental questions about whether weight loss itself is the therapeutic mechanism. A recent systematic review of nine bariatric surgery studies reached a similar conclusion, acknowledged that findings “should be interpreted with caution given the single-arm nature of the available evidence and the predominance of observational studies” (54). Further complicating the picture, GLP-1 receptor agonists produce clinical benefits independent of BMI reduction (55), with ICP decreasing within hours before any weight change occurs (56, 57). Research also shows the same biological pathways (adipokines, inflammation, hormonal imbalance) are used to explain both how higher weight could cause IH and how rapid weight loss might trigger it (58), while cardiovascular risk in IH is noted as being independent and unrelated to higher body weight (59).

Participant accounts consistently pointed to alternative explanations, particularly hormonal and metabolic mechanisms. Demonstrating nuanced engagement with the medical literature, one participant explained,

Another observed that weight is closely linked to hormonal influences, finding this association much more significant than weight alone. These experiential insights align with emerging research findings. Significantly elevated cerebrospinal fluid (CSF) leptin levels have been observed in pwIH, levels that do not correlate with BMI, suggesting hypothalamic dysfunction rather than adiposity as the mechanism. (60). Indeed, emerging medical research increasingly frames IH as a systemic metabolic disease with an evolving aetiology driven by metabolic dysregulation, involving a complex interplay of androgen excess, glucocorticoid dysfunction, and inflammation that affects CSF dynamics (44). This shift towards metabolic explanations aligns more closely with experiential knowledge than the reductive weight-causation narrative dominating clinical practice. As Potter et al. (44) acknowledge, “it is unknown what all the risk factors are that precipitate the condition” and “targeting certain hardwired risk factors is unachievable.” It is researchers rather than patients who are increasingly recognising that weight may be a factor in the disease, but not necessarily the cause.

Medical bias and the assumed profile of the ‘typical’ IH patient further complicate access to diagnosis and care. Medical literature consistently describes the typical patient as female, of childbearing age, with a BMI of 30 or over. This creates a paradoxical diagnostic situation where young women of larger body size may be prematurely diagnosed based on demographic profile, while those who do not fit the assumed profile may have their condition overlooked. This notion is not lost on pwIH who contend, “They are so focused on overweight child bearing age women that they miss anyone outside this box.” Participants at lower weights reported diagnostic dismissal or delay because they did not match clinical expectations: “I have been told numerous times by different doctors I don’t look like I have IIH. I also have PCOS. I get told the same thing about that.” Male participants also consistently report similar experiences, their symptoms dismissed because they did not match the expected profile. These accounts from those positioned as ‘atypical’ suggest the condition is more complex than weight-focused models allow.

This participant statement captures the central tension in experiential accounts. The medicalised promise is clear, lose weight and you won’t have any further problems. When that promise fails to materialise, those living with IH must navigate the gap between clinical expectations and everyday reality.

Weight was the most frequently mentioned issue when participants were asked the ‘one thing’ they wanted doctors or researchers to know, with one-third of respondents highlighting this concern. Many participants associate the emphasis on weight loss with inadequate treatment, believing their medical care has been undermined by the assumption that weight loss alone will resolve their symptoms.

While biomedical literature suggests that weight loss of 6-10% often leads to remission (61), participants report markedly different outcomes:

The persistence of symptoms despite weight loss highlights what participants see as a key limitation of focusing solely on weight, “weight is not a magical solution … Pushing weight loss risks overlooking other health concerns.” Notably, participants also report their symptoms worsening after bariatric surgery, the very intervention increasingly promoted as a definitive treatment.

Some participants recognised broader health benefits from lifestyle changes while differentiating these from IH-specific outcomes. As one reflected, “Being diagnosed with IIH has prompted me to change to a healthier lifestyle and I feel better for it but the symptoms didn’t go away.” This nuanced perspective acknowledges the general value of healthy behaviours while contesting their positioning as curative for IH.

The failure of weight loss to deliver promised outcomes reflects broader patterns in literature on higher body weight. Long-term sustainability of weight-loss interventions remains poor, with research showing that weight lost in the first year is often regained, returning to baseline or above within 5 years (62–64). The health effects commonly attributed to fatness may be caused by weight-cycling itself, which has been associated with higher mortality, negative cardiovascular effects, and depression (63). This pattern is reflected in the IH literature. For example, Miah et al. (3) found that average BMI increased after diagnosis despite weight loss being the primary management strategy; however, less than 0.3% of their cohort had undergone bariatric surgery, whereas 9% had undergone CSF shunt procedures. Even when bariatric surgery is pursued, a recent systematic review found that up to 50% of patients experience primary weight loss failure or substantial weight regain (54). The current treatment approach recommends an intervention that most people cannot sustain, while surgical or pharmaceutical options targeting weight remain more commonly used than those addressing the impairment effects, making the prescribed intervention potentially counterproductive. The lived experience echoes these patterns, demonstrating the impact when the promised cure fails to materialise:

The psychological consequences of weight-focused care extend beyond frustration with inadequate treatment to produce measurable iatrogenic effects. These harms are interconnected: the paradigm framing weight as cause and cure generates psychological distress, which produces embodied health consequences that the same paradigm then attributes to patient behaviour.

Participants describe internalising messages about personal responsibility, experiencing shame and self-blame when weight loss doesn’t achieve expected results. The impossible bind operates not only in clinical encounters but in patients’ relationships with their own bodies:

Weight cycling, the repeated cycle of weight loss and regain, is associated with adverse health outcomes (63–65). If healthcare professionals recommend weight loss, patients attempt it, regain weight as research predicts most will, and are advised to lose weight again, this cycle itself may cause harm. Weight cycling, weight stigma, and healthcare inequality remain unexamined as confounding factors in IH research, yet these are known independent contributors to adverse health outcomes.

These narratives align with case evidence that further challenges the weight-causation narrative. Hamdan et al. (66) report a case of a man who developed IH after 60kg weight loss through diet and exercise. A previous case documented IH occurring during weight loss mediated by weight-loss drugs (67). These cases indicate that the link between weight and IH is more complex than the dominant narrative suggests, yet they are still treated as anomalies rather than prompting a re-evaluation of underlying assumptions.

The curative fallacy therefore operates on multiple levels, failing to deliver on promised outcomes, generating psychological harm through internalised blame and devaluation and dismissal in healthcare encounters, and may add further health consequences through weight cycling.

The disconnect between clinical emphasis on weight loss and participants’ lived experiences demonstrates systematic undervaluing of experiential knowledge. Participants confirm that their embodied experiences include a wider range of presentations than typically discussed, and that their symptoms are complex and interconnected rather than reducible to body size. Despite the consistency and sophistication of participant accounts, pwIH report that their experiences are often dismissed. Fricker’s (33) epistemic injustice framework illuminates these dynamics. Testimonial injustice occurs when patient reports of weight loss has not improved their symptoms are disregarded because they are viewed through the lens of weight stigma, compounded by the gendered demographics of IH. Hermeneutical injustice operates through the dominance of the weight-causation narrative, leaving those who understand their weight gain as symptomatic without the shared language to communicate this in healthcare encounters.

Participants recounted ongoing experiences of their knowledge being dismissed.

This epistemic positioning creates practical consequences. The contradictions documented in medical literature create an impossible bind for patients. Do not lose weight and be blamed for IH persisting; lose weight ‘too slowly’ and be criticised for not trying hard enough; lose weight ‘too quickly’ and be blamed for triggering symptoms; maintain weight loss and still experience symptoms alongside collective disbelief. Regardless of patients’ actions, responsibility for treatment failure always lies with the individual rather than the limitations of the treatment approach.

This reflects what Grue (68) describes as the double bind faced by disabled people, where there are contradictory demands to overcome impairments through individual effort while having those efforts questioned; to accept medical authority yet advocate for their own needs; and to perform wellness while demonstrating sufficient impairment to access support. Fat studies scholars have identified a similar dynamic in the Good Fatty/Bad Fatty dichotomy (coined by Harding, 69, in Chastain, 70), where fat people are divided into those perceived as doing the “right” things (eating “correctly,” exercising, actively pursuing weight loss) and those perceived as failing to comply. “Good fatties” earn conditional tolerance through visible effort, while “bad fatties” are deemed deserving of stigma. For pwIH, these dichotomies intersect, where patients must continually demonstrate compliance with weight-loss regimens to be deemed deserving of care, yet the condition itself often renders this impossible. The dichotomy thus functions as a mechanism of social deviance, positioning those who cannot or do not lose weight as responsible for their ongoing illness.

Participants articulated this bind with clarity:

The bind operates both epistemically and practically, limiting what patients can legitimately know and assert about their own bodies as well as what they can do. It turns a medical condition into a moral failing, compounding physical suffering with psychological harm. The impossible bind forces patients to locate failure somewhere, and the weight-focused approach ensures that place is never the approach itself. Further, participants who report that weight loss hasn’t improved their symptoms face disbelief, their experiential evidence dismissed as non-compliance or inadequate effort. Those who report worsening symptoms after weight loss are treated as anomalies.

Healthcare encounters oriented toward thinner bodies exemplify Garland-Thomson’s (71) notion of “misfitting,” in which dissonance between body and environment creates spaces that are uncomfortable, unwelcoming, and unsafe (63). This misfitting is both material and intersubjective, shaping not only what care is offered but how patients are perceived and treated within those encounters. Participants consistently reported experiences of medical gaslighting, where symptoms are minimised, dismissed, or attributed to psychological causes. The collective experience expressed is that, regardless of the presenting complaint, weight becomes the default explanation: “Every time you walk into the doctor’s, it doesn’t matter what you go in for, they always bring it back to your weight.”.

This diagnostic overshadowing occurs in multiple directions. Participants with higher body weight report that all symptoms are attributed to body size, thereby delaying investigation of neurological issues, whereas those at lower body weight report diagnostic dismissal because they do not fit clinical expectations. Both patterns result in delayed diagnosis and treatment, with significant impacts on vision and quality of life. Body size, therefore, comes to represent the whole person, exemplifying synecdochic stigma, and obscures the complexity of individual presentations.

This is compounded by inadequate treatment, and healthcare professionals are often ill-equipped to support pwIH. Only 50% of participants reported receiving treatments that help with the day-to-day management of their condition (7, p. 177). As one participant stated, “Nobody will offer me an adequate plan to address my pain or symptoms.” Some participants have experienced treatment being withheld until they lose weight, prioritising body size change over symptom management and quality of life. Research by IIHUK confirms these patterns: among 625 respondents, 87% reported that they believed their condition was their fault due to their weight, while 78% were not offered support for weight management, and of those who were, 84% found it unhelpful or inappropriate (72, 73). The clinical encounter thus positions weight as the patient’s responsibility while failing to provide resources for the prescribed intervention and suggests that even weight-focused care often fails to meet patients’ needs.

The cumulative effect of these experiences influences not only the quality of healthcare encounters but also whether people seek healthcare at all. Participants described expecting negative encounters based on past experiences of weight stigma, leading some to delay or avoid seeking care altogether: “I put off going to the doctor because I know what they’re going to say. It doesn’t matter what’s wrong, they’ll tell me to lose weight. So why bother?”. Such avoidance carries specific risks for pwIH, where early intervention is significant for preserving vision. Weight-based discrimination leads to delayed care, cancelled appointments, and avoidance of health screenings (74, 75), while inadequate practitioner knowledge compounds these dynamics (7, 22, 76), potentially explaining the poor appointment adherence reported in IH (77).

Anticipated stigma also shapes how pwIH present themselves within healthcare settings. As Sheppard (78) notes, people with chronic illness often find themselves performing as ‘normal’ to avoid stigma while trying to appear ‘sick enough’ to be taken seriously. Zaks (79) explains how some learn to perform “the right kind of sick” to access necessary care. This is evident in the narratives of pwIH who describe self-censoring or minimising symptoms to avoid dismissive responses, “I’ve stopped mentioning certain symptoms because I know they’ll just blame my weight. It’s easier to just deal with it myself.” This strategic navigation adds burden while risking that clinicians receive incomplete information, compromising diagnostic accuracy and treatment planning.

Weight stigma in healthcare thus creates a self-perpetuating cycle. Negative experiences can lead to avoidance or guarded engagement, which may delay diagnosis or result in inadequate information exchange, thereby contributing to poorer outcomes. These outcomes are often attributed to patient non-compliance or the presumed health consequences of higher body weight. The weight-focused approach thus produces the very patterns it aims to address, while placing responsibility on individual patients rather than systemic bias. Participants described the cumulative toll:

This erosion of trust has broader consequences beyond individual healthcare visits, influencing adherence to treatment advice, willingness to participate in research, and engagement with health services more generally.

The structural factors obscured by weight-focused approaches have key implications for IH. Population-level data demonstrates that over half of pwIH come from the two most deprived quintiles, and crucially, even after adjusting for BMI, significant associations between IH and deprivation remain in women. Miah et al. argue that socioeconomic deprivation itself, rather than body size in isolation, contributes to the underlying causes of IIHUK (73, p. e1256). These factors may include diet, pollution, smoking, and psychosocial stress, all of which have potential metabolic or endocrine effects. Cooper, Fernandes, and Cooper (80) argue that IH represents the visible tip of a much larger and expanding burden of health inequities that disproportionately affect women from lower socioeconomic backgrounds. This framing positions IH as a condition arising from broader patterns of structural inequality rather than from individual failures in weight management. Weight-focused clinical approaches, placing responsibility on individual patients, cannot address these upstream determinants.

Social determinants create compounding barriers to IH care. Women with IH are significantly more likely to delay seeking care due to rural residence, transportation difficulties, and inability to afford copays or specialist visits compared to women without IH (81). Socio-economic, racial, and gender disparities may be more pronounced in IH than when body size is considered in isolation, indicating that the intersection of chronic illness, weight stigma, and structural disadvantages produces compounded effects that weight-focused clinical approaches cannot address.

The harms identified in this study are not accidental outcomes of weight-focused IH care but flow from its underlying assumptions. Meaningful change requires examining both clinical practices and the research frameworks that shape them, as well as wider cultural narratives that moralise weight and place responsibility for illness on individual patients.

These findings should be understood within the study’s limitations. Participants were a self-selected sample from English-speaking online communities who, although geographically diverse, were predominantly white, Western, and cisgender women. This predominance is to be expected, given the demographics of IH more broadly, and may therefore reflect the diagnostic bias in IH. These limitations are shared by much epidemiological research informing IH treatment, for example Kilgore et al. (46, p. 4) acknowledge that with 90% of their study population identifying as Caucasian, “it may be difficult to extrapolate these results to other non-Caucasian populations.” The researcher is a mid-sized fat woman living with IH who shares many of these characteristics. The collective narrative therefore primarily reflects white, Western perspectives, and the experiences of pwIH at intersections of multiple oppressions may differ significantly. Future research should investigate how weight-related experiences vary across healthcare systems and cultural settings, with particular focus on marginalised and non-English speaking communities.

Despite these limitations, this study demonstrates that pwIH hold valuable knowledge currently marginalised within clinical and research contexts. Participants offered sophisticated analyses of their symptoms, recognised patterns challenging mainstream explanations, and suggested alternative views based on embodied experience. This knowledge is not inferior to clinical knowledge but different in nature, offering insights biomedical methods cannot access. Systematic analysis of approximately 2,500 weight stigma research articles found that 64% paradoxically reinforce the pathologisation of fatness by portraying it as a disease or problem requiring elimination (97). Fox argues that much research on weight stigma is effectively research centred on higher body weight, and that patient perspectives are selectively included and framed in ways that reinforce pre-existing weight-reduction agendas. Research priorities should shift from focusing on weight loss to examining hormonal and metabolic processes, including leptin dysregulation and hypothalamic involvement. Experiential knowledge, rather than being dismissed as anecdotal, can play a meaningful role in forming hypotheses for scientific investigation.

In the context of IH, neither the medicalised conceptualisation nor the lived experience can offer a complete understanding without the other. Each represents only a fragment of the spectrum of IH; to fully understand the condition, each perspective requires the other. Moving forward, meaningful engagement of pwIH in research design, priority setting, and knowledge production is essential, recognising experiential expertise as a legitimate form of knowledge. Reframing IH as a complex, systemic condition with metabolic and hormonal components, rather than as a simple consequence of excess weight, would accommodate both clinical observations and experiential insights. This approach would not dismiss the association between IH and higher body weight but would contextualise it within a more nuanced understanding that does not reduce the condition to individual body size or locate responsibility for illness with patients.

Weight stigma functions as a ‘fundamental cause of (health) inequality,’ leading to health disparities through multiple pathways such as psychological distress, healthcare avoidance, diagnostic overshadowing, and inadequate medical treatment (84). The harms identified in this study flow from systemic frameworks, not just individual bias. As Westbury et al. (98) contend, solutions that focus solely on changing individual behaviours overlook the evidence supporting systemic and environmental interventions.

Clinical implications extend beyond individual healthcare providers. Weight-inclusive approaches to IH care should focus on symptom management and quality of life rather than body-size change, recognising that weight loss often fails to deliver expected outcomes. Participants emphasise the need for treatments that are holistic and centred on impairment effects and impact rather than each physical symptom in isolation. The Health at Every Size (HAES) framework offers one evidence-based model for such care, grounded in principles of weight inclusivity, health enhancement, respectful care, eating for well-being, and life-enhancing movement (99, 100). Research demonstrates that HAES approaches produce improved physical health outcomes independent of weight loss (101), suggesting that focusing on health behaviours rather than body size may be more effective for populations like those with IH. This calls for moving beyond fragmented specialties toward integrated care to address the multifaceted nature of IH. Meaningful change requires questioning assumptions embedded in clinical guidelines, research priorities, and medical education, as well as broader cultural narratives that moralise weight. The call from participants is clear: