The Social Life of Migraine: A Meta-Ethnography of Lived Experience in Adults With Migraine

Abstract

Background

Migraine is a common and disabling neurological disorder that affects physical, emotional, and social functioning. Despite its prevalence, it remains under-recognized and stigmatized. Understanding the lived experience of migraine is essential to inform person-centred care and improve health system responsiveness.

Objectives

To synthesize qualitative research on how adults experience, interpret, and cope with migraine, and to develop an interpretive model of its lived experience.

Methods

We conducted a meta-ethnography following Noblit and Hare’s seven-phase approach, guided by the PRISMA 2020 and eMERGe reporting standards. Five databases were searched from inception to April 2025 for qualitative studies exploring the lived experience of adults with migraine. Two reviewers independently screened studies, extracted data, and appraised methodological quality using the Critical Appraisal Skills Programme (CASP) checklist. Concepts were translated across studies and developed into a line-of-argument synthesis to generate higher-order interpretations.

Results

Forty-six studies were included, covering North America, Europe, Asia, and Australasia, with most participants being women. Four overarching domains were identified. First, embodied disruption and uncertainty captured migraine as an unpredictable and intrusive condition that fragmented bodily control and everyday life. Second, negotiating stigma and social legitimacy described the burden of living with an invisible illness that was often misunderstood, minimized, or doubted by others. Third, coping, adaptation, and identity work reflected the active labour of self-management, acceptance, and reconstruction of identity in the pursuit of agency. Fourth, seeking care and system navigation highlighted delayed diagnosis, therapeutic pessimism, fragmented care, and the search for validation. These domains recast migraine as more than recurrent neurological symptoms: it emerges as a biographically disruptive condition that must be continually managed and incorporated into one’s sense of self.

Conclusion

Migraine is lived not only as a neurological disorder but as a socially embedded and biographically disruptive condition that reshapes identity, relationships, and participation in everyday life. Its invisibility and unpredictability create uncertainty and stigma, compelling individuals to reconstruct coherence and agency. Clinicians should design holistic, empathic migraine care that addresses these psychological and social realities.

Keywords

access to healthcare global health health advocacy patient experience patient-centered care public health

1. Introduction

Migraine is a common and disabling neurological disorder that imposes a significant burden on individuals, families, healthcare systems, and economies.¹ Globally, migraine affects approximately 14% or over 1 billion people, making it the second most prevalent neurological disorder after tension-type headache.² According to the Global Burden of Disease Study 2021, migraine is the leading cause of years lived with disability (YLDs) among people under the age of 50, and the second leading cause of disability overall, surpassing many other chronic conditions such as diabetes, depression, and osteoarthritis. Among neurological disorders, it ranks as the top contributor to disability-adjusted life years (DALYs) in adolescents and adults aged 15–49.³

Despite its high prevalence and disabling nature, migraine remains under-recognized, underdiagnosed, and undertreated.⁴ Many people living with migraine report delays in diagnosis, dissatisfaction with care, and limited access to effective treatments, particularly in resource-constrained settings. Stigma, both internalized and external, further compounds the burden of migraine, with individuals often feeling dismissed or misunderstood by clinicians, employers, and even loved ones ⁵. Qualitative studies reveal that many patients perceive their condition as invisible and poorly understood, leading to emotional distress, strained social relationships, and disrupted occupational functioning ^6-8.

Although substantial advances have been made in understanding the neurobiology of migraine, less attention has been given to its experiential dimensions. Migraine is not only a sensory disorder characterized by episodic or chronic head pain, but a complex biopsychosocial condition that affects how individuals think, feel, work, and engage with the world.⁹ Qualitative research offers critical insights into these subjective yet essential aspects, helping illuminate the personal, social, and existential impacts of the disease that are not easily captured by quantitative outcome measures. Previous reviews have explored migraine management and attitudes to treatment,^10,11 while others have included migraine as part of broader syntheses on chronic headache.¹² However, given the distinctive clinical trajectory, psychological toll, and social implications of migraine, there is a need for a focused synthesis of qualitative research that examines how adults experience migraine in their everyday lives.

This systematic review of qualitative studies and meta-ethnography thus aims to construct a conceptual understanding of what it means to live with migraine, and answer the question: How do adults experience, interpret, and cope with migraine in their everyday lives?

2. Methods

This qualitative systematic review and meta-ethnography was conducted in accordance with the PRISMA 2020 guidelines for reporting systematic reviews¹³ and the eMERGe guidance for meta-ethnography reporting.¹⁴ The protocol was prospectively registered with the International Prospective Register of Systematic Reviews (PROSPERO), registration number CRD420251133779.

2.1. Search Strategy

For this review, a comprehensive search strategy was developed and implemented across five major databases: MEDLINE (via OVID), EMBASE, CINAHL, PsycINFO, and the Cochrane Library. The search aimed to capture all relevant qualitative studies exploring the lived experience of migraine among adults. Keywords and controlled vocabulary terms included “migraine,” “headache disorders,” “qualitative,” “interviews,” “phenomenology,” and “lived experience.” The SPIDER tool (Sample, Phenomenon of Interest, Design, Evaluation, Research Type) was used to structure the search. The full search strategy for the various databases is detailed in the supplementary Table S1. The search included articles published up to April 30, 2025. Reference lists of eligible studies were also hand-searched to identify additional studies.

2.2. Eligibility Criteria

Studies were eligible for inclusion if they met the following criteria: 1. Reported original qualitative research or a qualitative component of a mixed-methods study; 2. Focused on adults (≥18 years) diagnosed with migraine, with or without aura; 3. Established diagnosis of migraine, defined by the International Classification of Headache Disorders (ICHD)¹⁵; 4. Used interviews, focus groups, or other qualitative methods to elicit first-person accounts of migraine experience; and 5. Peer-reviewed journals and relevant doctoral dissertations in English, containing original qualitative primary data. The inclusion of doctoral dissertations was a pre-specified allowance intended to capture substantive qualitative primary data that had not progressed to journal publication, provided the work met all other eligibility criteria and passed the same CASP quality appraisal as peer-reviewed studies. Studies were excluded if they focused solely on caregivers, healthcare providers, or paediatric populations; did not provide disaggregated qualitative data; or investigated headache types other than migraine (e.g., cluster headache) without specifying migraine findings.

This review focuses specifically on adults with a formal diagnosis of migraine instead of other chronic headache disorders to enhance conceptual clarity and coherence in the synthesis, especially given the differences in symptom expression, functional impact, and coping mechanisms between adult and pediatric migraine and other headache disorders.

2.3. Data Extraction

Two reviewers independently extracted key study characteristics, including author(s), year, country, study aim, design, participant characteristics, and main findings. A second-level extraction focused on identifying first-order constructs (participant quotations if available), second-order constructs (authors’ interpretations), and any conceptual themes presented in each study, as defined by Schütz (1962).¹⁶ Extracted data were carefully cross-checked for accuracy and organized using a structured matrix to facilitate synthesis and reciprocal translation.

2.4. Quality Appraisal

The methodological quality of the included studies was independently assessed by two reviewers using the Critical Appraisal Skills Programme (CASP) checklist for qualitative research.¹⁷ The CASP qualitative checklist comprises 10 standard items evaluating clarity of aims, methodological appropriateness, research design, recruitment, data collection, researcher reflexivity, ethical considerations, rigour of analysis, clarity of findings, and the value of the research. To permit quantitative comparison across studies, each item was scored on a three-point scale (0 = criterion not met, 1 = partially met, 2 = fully met), yielding a maximum score of 20 per study. Percentage scores were calculated as (total score/20) × 100 and classified as High (≥80%), Moderate (60–79%), or Low (<60%) methodological quality. The same 10-item framework was applied uniformly to all included studies to ensure comparability. Discrepancies were resolved through discussion and consensus. No studies were excluded based on quality alone; instead, quality appraisal informed the confidence in review findings.

2.5. Data Synthesis

Data were synthesized using Noblit and Hare’s (1988) seven-phase meta-ethnographic approach. This interpretive method allows for the translation of concepts across studies to generate higher-order understandings.¹⁸ Two researchers (with training in psychology, public health, and medicine) independently conducted line-by-line coding of second-order constructs and compared them across studies, focusing on the core question: How do adults experience, interpret, and cope with migraine in their everyday lives? First-order constructs (participant quotes) were used to ground interpretations and ensure the authenticity of participant voices.

Second-order constructs were then translated into one another to develop overarching third-order interpretations. Contradictions and tensions across studies were explored through refutational synthesis, and commonalities were captured through reciprocal synthesis. A final line-of-argument synthesis was developed to explain the interrelationship between key themes and offer an interpretive model of the lived experience of migraine, that is, not only the challenges and disruptions caused by migraine but also the sense-making processes, emotional responses, coping strategies, and socio-relational dynamics reported by individuals. All stages of synthesis were iterative and conducted through consensus discussions. The final product is presented narratively with supporting quotations to preserve the depth and richness of participants’ lived experiences.

To interpret these narratives, we also drew on theoretical perspectives from sociology and medical anthropology. Symbolic interactionism emphasizes how illness is given meaning through everyday social interactions.¹⁹ Applied to migraine, this perspective highlights how legitimacy and identity are negotiated in encounters with family, clinicians, and wider society, whether through validation or dismissal. Biographical disruption, in turn, further illuminates how chronic conditions interrupt anticipated life trajectories, compelling sufferers to reconstruct their sense of self and reconfigure daily routines.²⁰ These perspectives provided sensitizing conceptual frameworks for interpreting the lived experiences described in the included studies, situating them in relation to both individual meaning-making and broader socio-relational contexts.

2.6. Ethical Approval

Ethical approval was not required for this research because this review did not involve any new data collection or interaction with human subjects.

3. Results

3.1. Overview of Literature Retrieval

All included studies dated 2025 were published or made available online prior to the April 30, 2025 search cutoff and were captured through the systematic database searches or hand-searches. As illustrated in Figure 1, the database search yielded a total of 1,920 records: MEDLINE (n = 634), EMBASE (n = 811), PsycINFO (n = 305), CINAHL (n = 170) and Cochrane Library (n = 0). After the removal of 453 duplicates of the records from the database search, 1,467 unique records of these remained for screening. An additional 85 records were also identified through citation tracking and hand-search. Of the 1,467 records from database search, 1,356 records were excluded based on title and abstract, leaving 111 full-text reports sought for retrieval, of which 6 could not be assessed, resulting in 105 reports to be assessed for eligibility. Meanwhile, all 85 reports identified through citation tracking and hand-search were successfully retrieved. These 190 reports underwent full-text review, for which 144 reports were further excluded, leaving 46 qualitative studies that were included in the final review and synthesis.

Figure 1.

PRISMA flowchart showing the study selection process

3.2. Characteristics of Included Studies

Table 1 provides a detailed overview of study characteristics, including author, year, country, study objectives, methodology, participant demographics, migraine type, and key findings. The 46 included studies spanned diverse geographical regions, including North America, Europe, Asia, and Australasia, and sample sizes varied widely (from fewer than 10 to over 100 participants), and participants were predominantly female (consistent with migraine epidemiology), though a minority of studies explored male perspectives explicitly. Most studies involving adults diagnosed with migraine (with or without aura) according to ICHD criteria. A range of qualitative methodologies were used, including phenomenology, grounded theory, narrative inquiry, and thematic analysis.

Table 1.

Characteristics of the Studies Reviewed

Study (author, year)	Country	Methodology	Participants	Data collection	Aim(s)
Befus et al., 2019²¹	USA	Qualitative description with conventional content analysis	N = 30, 83% female, aged 19-74 (mean age = 46)	In-person focus group	To explore patterns of complementary, alternative and integrative medicine (CAIM) use, methods of accessing CAIM approaches, and interest in and motivations for using CAIM among a group of primary care patients with migraine
Belam et al., 2005²²	UK	Consensual qualitative research with interpretative thematic analysis	N= 8 adults, 6 females, 2 males	Individual interviews	To study true research partnerships between patients and healthcare professionals; to explore what it is to suffer with migraine from patients’ perspectives for health service delivery
Buse et al., 2022²³	USA	Hybrid deductive/inductive thematic content analysis, with both a priori and open coding developed iteratively across interviews	N = 40, 31 females, 7 males, 2 gender queer/non-binary/trans, aged 21-70 (mean age = 44)	Online semi-structured interviews	To explore how the COVID-19 pandemic affected the experiences, treatment priorities, and daily functioning of people living with migraine who had not contracted COVID-19, using qualitative interviews
Connor et al., 2021²⁴	USA	Constant comparative method; Grounded theory approach	N = 15, mean age = 34.9, 93.3% white, 73.3% non-hispanic	In-person interviews	To characterize expectations, attitudes, and experiences of individuals with migraine who were randomly assigned to receive chiropractic care delivered within a randomized controlled trial in a hospital-based integrative care center
Cottrell et al, 2002²⁵	USA	Thematic analysis	N = 24	In-person focus group	To identify the areas that people find most difficult in living with migraines and, in that regard, what assistance would be most helpful to them
Dekker et al., 2012²⁶	Netherlands	Thematic analysis	N = 20, female 70%, mean age = 43	In-person focus group	To explore the opinions, motives and expectations of patients regarding prophylactic migraine therapy
Del Monaco, 2013²⁷	Argentina	Relational sociological analysis using thematic approaches	Patients diagnosed with chronic migraine receiving treatment in a public hospital; exact total N not reported in source	Semi-structured interviews with both neurologists and patients	To explore how biomedical logic of self-care is experienced by chronic migraine patients in Argentina, and how this shapes their treatment, adherence, and experience of uncertainty
Dione et al., 2024²⁸	Canada	Interpretive description with thematic analysis	N = 10, female registered nurses working in Ontario, aged 30–60s, varying migraine histories and frequencies (episodic and chronic)	Semi-structured interviews via Zoom	To explore and describe how nurses with migraine experience and practice self-management in their professional and personal lives
Estave et al., 2023²⁹	USA	Constructivist grounded theory	N = 47, 43 females, 4 males, mean age = 44.4 (SD = 13.0)	In-person, semi-structured qualitative interviews conducted at the end of the 12-week MBSR intervention	To understand the mechanisms of mindfulness’ impact on migraine
Estave et al., 2021⁸	USA	Constructivist grounded theory using framework matrix analysis and magnitude coding	N = 81, 77 females, 4 males, mean age = 45 (SD = 13-17 across 2 RCTs) adults (across 2 RCTs)	In-person, semi-structured qualitative interviews	To better characterize the ways that migraine affects multiple domains of life
Finore, 2012³⁰	Italy	Interpretative phenomenological analysis	N = 10, mean age = 40.9	Semi-structured interviews	To gain insight of migraineurs’ experience of biofeedback treatment, with the main purpose of identifying elements of the treatment that they characterized as being effective measures of a positive therapeutic outcome
Flynn et al., 2024³¹	Ireland	Thematic analysis	N = 20 adults, 15 females, 5 males	Individual Interviews and Focus groups	To explore the lived experience of migraine in students
Gerstein et al., 2023³²	USA	Hybrid content analysis with mixed-methods integration	N = 40, 78% female, aged 21-70 (mean = 44), 68% White, 23% Black or African American	Online semi-structured interviews	To capture patients’ perspectives on migraine-related cognitive symptoms during pre-headache, headache, post-headache, and interictal periods
Hareendran et al, 2017³³	USA	Thematic coding	N = 17 adults, aged 18–60, 82.3% female, mean age = 39.5, 11.8 migraines/month avg., mean HIT-6 score = 62.4	In-person semi-structured interviews (concept elicitation and cognitive interviews)	To develop and explore the content validity of a patient-reported outcome measure (MPFID) evaluating the impact of migraine on physical functioning
Hareendran et al., 2018³⁴	USA	Thematic coding	N = 32: 84.4% female, mean age 40.3 (SD 11.3), 65.6% Episodic Migraine	In-person semi-structured interviews (concept elicitation and cognitive interviews)	To develop and evaluate the content validity of the Migraine Functional Impact Questionnaire (MFIQ) instrument and to assess functional outcomes of preventive treatments for migraine
Heidari et al., 2022³⁵	USA	Deductive and inductive content analysis, followed by axial coding	N = 154 adults	Open-ended online survey	To explore important themes in patient experiences with migraine and to understand the relationship of these themes with external factors such as the health care system and societal influences.
Huddleston et al., 2018³⁶	USA	Conventional content analysis	N = 25, 35% female, aged 18-75, 60% African American, 24% White, 12% Hispanic, 4% Asian	In-person semi-structured interviews	To examine the acceptability, feasibility, and preliminary efficacy of a 1-d acceptance and commitment therapy (ACT) plus Migraine Education workshop
Knauf et al., 2024³⁷	Germany	Deductive-Inductive Hybrid Content Analysis	N = 24, 21 females, 3 males, aged 31-62 (mean = 49.5)	In-person and telephone, semi-structured interviews	To gain detailed insights into the types of working conditions that may facilitate or hamper the ability to self-manage migraine
Lo et al., 2022³⁸	USA, UK, Canada	Thematic analysis	N = 35, mean age = 40, 32 females, 3 males, 69% had degree-level education, subgroup had ≥3 months of CGRP mAb use	Semi-structured interviews (30–80 mins) via phone or video call	To understand the interictal burden of migraines from the patient perspective and explore their experiences with treatment
Rutberg et al., 2009³⁹	Sweden	Inductive qualitative content analysis	N = 10 women, aged 31–60 (median = 44.5), 9 with confirmed migraine diagnosis, 1 meeting IHS criteria, migraine duration 1–34 years (median = 12.5), all received ≥8 acupuncture sessions	In-person, semi-structured interviews	To describe the experiences of acupuncture treatment among women with migraine
Mangrum et al., 2024⁴⁰	USA	Thematic/conceptual analysis; concepts grouped into broad functioning domains based on content similarity	N = 71, 84.5% female, aged 18–70, participants had either episodic or chronic migraine	Semi-structured qualitative interviews (one-on-one), conducted remotely (phone or video)	To describe the impact of migraine on functioning using comprehensive patient-centered qualitative interviews
McGinley et al, 2025⁴¹	USA	Content analysis; coding by migraine phase and symptom category	N = 40 adult participants, 88% female, 50% chronic migraine, 50% episodic migraine; median age not stated, broad age range	Semi-structured interviews conducted via audio-only web conferencing	To explore and describe the full range and frequency of migraine-related symptoms across all phases of the migraine cycle (pre-headache, headache, post-headache, interictal) from the patient’s perspective
McInnarney et al., 2024⁴²	New Zealand	Mixed-methods; thematic analysis of open-ended survey responses	N = 530, 81.7% female, 7.7% male, 1.5% another gender, 9.1% missing gender data, 22.2% chronic migraine, 77.7% episodic migraine	Online surveys delivered online	To describe the barriers people with migraine disease face when seeking care for their condition
Meyer, 2002⁴³	USA	Grounded theory; analysis focused on coding, categorization, and theory-building (core category: “watching out”)	N = 22, all adult women with migraine (mean age 39.8, SD = 10.3)	In-depth qualitative interviews	To explore the process of vigilance in women who have migraine headaches and how they maintain function when facing unpredictable pain
Moloney et al., 2006⁴⁴	USA	Interpretive analysis of narrative data	N = 53, all women aged 40–55; 10 participants in the first study, 43 in the second	Combination of individual interviews, online focus groups, and discussion forums using open-ended questions	To describe the experiences of midlife women with migraines
Morgan et al., 2016⁴⁵	UK	Framework analysis	N = 21, aged 19-70 (mean = 43), 67% female, 14% black or mixed ethnicity, 86% white	In-person semi-structured interviews	To examine patients’ experience and responses to a behavioural intervention with relaxation and cognitive behavioural therapy components delivered in three individual therapist sessions with follow-up
Ng-Mak et al., 2011⁴⁶	USA	Thematic analysis	N = 34, 20 females, 14 males, mean age = 40.7 (SD = 10.6)	Focus groups, event logs, and cognitive debriefing interviews	To understand migraine postdrome by directly interviewing migraine patients with postdrome symptoms
Palacios-Ceña et al., 2017⁴⁷	Spain	Thematic analysis	N = 20, 20 females, 0 male, mean age = 38.65 (SD = 13.85)	Semi-structured interviews	To explore the views and experiences of a group of Spanish women suffering from chronic migraine
Parker et al, 2023⁴⁸	USA	Mixed-methods; cross-sectional observational design	N = 127, 113 females, 14 males, mean age = 42.3 (SD = 13.9)	Online self-report surveys and semi-structured phone interviews	To describe and examine the relationships between perceived injustice, quality of life, and psychiatric symptoms through a mixed-methods, cross-sectional observational study design in people with migraine.
Persson et al., 2023⁹	Sweden	Deductive and inductive approach, followed by axial coding	N = 8 adults, 6 females, 2 males. 4 Migraine with aura, 4 migraine without aura	Semi-structured face-to-face individual interviews	To explore patients’ experiences and management of pain in connection with a migraine attack in episodic migraine.
Persson et al., 2025⁴⁹	Sweden	Thematic analysis	N = 29 adults, 76% female, mean age = 46.6, episodic migraine	Semi-structured interviews post-intervention	To evaluate feasibility and patient experiences of acceptance-based internet CBT for migraine
Peters et al., 2003⁵⁰	UK	Grounded theory	N = 13, 69% female, aged 24-60	In-person semi-structured interviews	To gain insight into the patients’ decision-making for migraine and chronic daily headache management
Peters et al., 2004¹¹	UK	Grounded theory-informed analysis with triangulation	N = 13, 9 females, 4 males, aged 24-60	In-person semi-structured interviews	To gain insight into patients’ perceptions of migraine and chronic daily head-ache management
Peters et al., 2005⁵¹	UK	Grounded theory	N = 13 adult patients with migraine, 5 of whom were classified as having CDH. 69.2% females	Semi-structured interviews	To gain insight into the management of migraine and chronic daily headache from the patients’ perspective
Ramsey, 2012⁵²	United States of America	Hermeneutic phenomenological analysis	N = 8, 8 females, 0 male, mean age = 35.9	In-person, audiotaped narrative interviews guided by story theory	To explore the structure of meaning in women’s lived experience of migraine headache, in order to inform holistic nursing care and improve quality of life
Ruiz de Velasco et al., 2003⁵³	Spain	Krueger method - thematic analysis	N = 50, 33 physician-directed patients, 5 self-medicated patients, 5 relatives, 7 healthcare professionals	Focus groups and individual interviews	To assess the impact of migraine on the quality of life of migraineurs through the perception of patients and their relatives, and healthcare professionals
Rutberg et al., 2012⁵⁴	Sweden	Hermeneutic phenomenological analysis	N = 10, 10 females, 0 male, aged 37-69	In-person semi-structured interviews	To explore the meaning of living with migraine
Rutberg et al., 2013⁵⁵	Sweden	Hermeneutic Phenomenology	N = 11, female = 81.8%, aged 20-69	In-person interviews	To explore the lived experience of physical therapy of persons with migraine
Scaratti et al., 2018⁵⁶	Italy	Narrative thematic analysis	N= 16 adults, 13 females, 3 males, all with diagnosis of chronic migraine and of medication-overuse headache	Individual interviews	To explore the psychological and social features underlying the relapse phenomenon and to observe eventual differences between frequent relapsers and non-frequent relapsers by considering their point of view, perceptions, and perspective of their subjective experience of relapse
Schulz et al., 2023⁵⁷	Australia	Thematic analysis	N = 70, 60 females, 10 males, mean age = 39.2 (SD = 11.3)	In-person, semi-structured interviews	To investigate individual perspectives on how migraine and neck pain relate
Seage et al., 2024⁵⁸	UK	Framework analysis using the Common-Sense Model as the theoretical framework; secondary coding with team consensus	N = 11, all white, 9 females, 2 males	Semi-structured face-to-face interviews	To explore individuals’ experiences and perceptions of migraines and their treatment using the Common-Sense Model of Illness Representations
Seo et al., 2021⁵⁹	USA	Thematic analysis	N = 47, 85.1% female, mean age = 46.8	In-person focus group	To inform the design of a preference-elicitation instrument, which is being developed to quantify preventive treatment preferences of people with migraine
Skomo et al., 2008⁶⁰	USA	Inductive content analysis	N = 13, 92% female, aged 21-47	In-person individual interviews and focus group	To evaluate migraineurs’ perceptions of the roles that pharmacists may play in helping them manage their disease
Speck et al., 2019⁶¹	USA	Constant comparative method	N = 11 adults, 9 females, 2 males; 7 episodic and 4 chronic migraine	Semi-structured one-to-one interviews	To ascertain the migraine experience with a particular focus on the impact on roles and daily functioning; determine the comprehensiveness and comprehensibility of the Migraine-Specific Quality of Life Questionnaire version 2.1 electronic Patient-Reported Outcome Role Function-Restrictive (MSQ v2.1 ePRO RFR) domain items, and the appropriateness and understanding of the recall period, response options, and instructions; and assess the usability on an electronic tablet device.
Speck et al., 2020⁶²	USA	Qualitative data analysis	N= 11 adults, 8 females, 3 males, mean age = 42	Individual interviews	To explore migraine symptoms and day-to-day impacts; determine the comprehensiveness and comprehensibility of the previously developed 24-Hour Migraine Quality of Life Questionnaire electronic patient-reported outcome (24-Hr MQoLQ ePRO) items, and the appropriateness and understanding of the recall period, response options, and instructions; and assess the usability on an electronic hand-held device
Varkey et al., 2013⁶³	Sweden	Qualitative content analysis	N = 21 adults, 15 females and 6 males. 15 had migraine with aura, 1 had migraine without aura and 5 had both	Individual, one-on-one interviews	To elucidate migraine prevention from patients’ perspectives

3.3. Assessment of Study Quality

All included studies were appraised using the CASP checklist for qualitative research (with detailed assessment in supplementary Table S2). Overall, methodological quality was moderate to high. Most studies clearly articulated their aims and provided appropriate designs. Data collection methods were generally rigorous, though reflexivity was inconsistently reported. A few studies lacked clarity regarding analytic procedures or failed to adequately consider researcher positionality.⁶⁴ One included study (Del Monaco, 2013) did not explicitly report the total number of participants; methodological rigour for this study was appraised on the basis of the explicit description of sampling strategy, recruitment setting, inclusion criteria, and data collection procedures, which together provided sufficient information to evaluate each CASP item despite the absence of a numerical sample size. Despite these limitations, no studies were excluded from the meta-ethnography as they were judged to contribute meaningfully to the synthesis.

3.4. Meta-Ethnographic Synthesis

Our meta-ethnography identified four major domains that, together, build a higher-order line of argument: migraine is lived as an unpredictable and delegitimized condition that compels sufferers to continually renegotiate identity, agency, and social legitimacy. Table 2 mapped the first-order constructs (participant quotes or paraphrased sentiments) to second-order constructs (authors’ thematic interpretations), offering transparency in the synthesis and showing how we moved from data to interpretation.

Table 2.

First- and Second-Order Constructs Identified Across the Studies Reviewed

Study (author, year)	First-order constructs	Second-order constructs	Third-order constructs	Overarching domain
Befus et al., 2019²¹	“I think the most important thing is to treat the whole patient, not just the headache or prescribe medication”	Desire for a more holistic, collaborative approach to treatment; Medication as a short-term solution	Desire for holistic, patient-centered care; Concerns with over-reliance on medication; Negative impact of medication side effects	Healthcare navigation
Befus et al., 2019²¹	“I take tons of ibuprofen, but that’s a band-aid. It can’t be a long-term band aid”			Healthcare navigation
Belam et al., 2005²²	“You can’t sleep because your head hurts on the pillow.”	Impact on life; Making sense, putting up with it, doing something about it; Self-help and professional help	Physical and emotional disturbances; Migraine causing social disruptions	Embodied disruption and uncertainty
Belam et al., 2005²²	‘’Migraines make you feel very vulnerable. You need to be able to control your life and not be dependent on anyone.’’			Embodied disruption and uncertainty
Buse et al., 2022²³	“I did try Botox. But I only had one round of those. It was one treatment. And then, three months later, COVID.”	Interrupted or reduced access to in-person medical care; Increased migraine frequency, severity, and stress	Disruptions to in-person care (e.g., provider turnover, clinic closures) delayed or prevented migraine treatments, worsening symptoms; Fear of COVID-19 reduced hospital visits, forcing patients to endure severe migraines at home; Pandemic stressors (anxiety, unemployment, uncertainty) exacerbated migraine frequency and severity	Embodied disruption and uncertainty
Buse et al., 2022²³	“…my anxiety levels come up or stay up for extended periods of time, usually I will see an increase in migraine or headache symptoms as well, so I’m trying to stay calm”			Embodied disruption and uncertainty
Connor et al., 2021²⁴	“I’ve been really stressed at work. …That’s definitely been triggering migraines. My shoulders and neck have been super tight lately… I think that [tightness] triggers my migraines.”	Musculoskeletal issues contribute to migraine; The importance of the chiropractor – patient relationship as an essential component to effectively managing migraine	Disproportionate perceived burden of migraine; Neck, posture, and musculoskeletal contributors to migraine; Skepticism, curiosity, and mixed expectations around chiropractic care	Coping and identity work
Connor et al., 2021²⁴	“[From chiropractic care] I noticed more [change] in terms of my neck, realizing how sometimes [my neck is] really stiff and [how] my sleeping positions contribute to that [stiffness], which ultimately does contribute to me having migraines…”			Coping and identity work
Cottrell et al., 2002²⁵	“I’m not the mom I wanted to be. I’m short-tempered, and I don’t like that.”	Effect on social functioning; Effect on family functioning; effect on work; Effect on relationships	Loss of identity and control in daily life; Stigma and delegitimization of migraine; Abandonment by the healthcare system	Stigma and social legitimacy
Cottrell et al., 2002²⁵	“Gradually, things are taken away from you. Like you can’t even walk down the street on a sunny day because all the sun will give you a headache.”			Stigma and social legitimacy
Dekker et al., 2012²⁶	“I ‘did’ the whole alternative circuit. I tried everything.”	Previous steps taken to prevent migraine; Satisfaction with current migraine treatment; Taking the initiative for prophylaxis	Exhaustion with acute treatments and openness to prevention; Mistrust, fear, or stigma; Conditional acceptance of prophylaxis based on severity or impact	Embodied disruption and uncertainty
Dekker et al., 2012²⁶	“With prophylactic drugs you’re able to participate much more in sport activities - which I enjoy very much.’’			Embodied disruption and uncertainty
Del Monaco, 2013²⁷	“People don’t respect the pain and that’s why they wait so long, that doesn’t happen with other diseases.”	Care, adherence and uncertainty; Continuity of treatments; Chronicity of condition and self-care	Chronic migraine is an invisible and delegitimized illness; Suffering is endured rather than addressed; Disappointment with the medical system leads to treatment fatigue	Embodied disruption and uncertainty
Del Monaco, 2013²⁷	“Migraine patients don’t adhere to their treatments like they do with other illnesses. It’s cyclic, when they improve, they stop coming; when the pain returns, they come back.”			Embodied disruption and uncertainty
Dione et al., 2024²⁸	“I find it’s usually men who don’t get migraines that believe you the least and are not very empathetic towards your experience.”	Self-management strategies; Living with an invisible condition; Pharmacological strategies	Migraine self-management requires early intervention and constant vigilance; Supportive and flexible healthcare relationships can improve coping; Nurses rely on self-education and digital resources to understand and manage symptoms	Embodied disruption and uncertainty
Dione et al., 2024²⁸	“… Sometimes, I would put a cold cloth on my head, and put some peppermint oil—it’s cooling effect helps.”			Embodied disruption and uncertainty
Estave et al., 2023²⁹	“I think I recognized the headache coming on a little earlier or just being more aware of what’s going on in my body”	Altered pain experience seen through experimental heat pain testing	Enhanced bodily awareness and early symptom detection; Mindfulness as a tool for pain modulation and emotional; Reduced fear, anxiety, and catastrophizing	Embodied disruption and uncertainty
	“The diverting your mind from the actual pain that you are feeling… You can get through very painful periods of time… Without having to take medication.”	Altered response to migraine attack
		Altered relationship to migraine disease
Estave et al., 2021⁸	“[Migraine attacks] have ruined my life in so many ways … I cannot do so many things. I have to stop doing things…’’	Global negative impact on overall life; Emotional health disruption (e.g. anxiety, depression, guilt, frustration); Impaired cognitive function (concentration, communication)	Loss of control and life disruption; Impact on role fulfilment (work, parenting, social); Productivity and career impairment	Embodied disruption and uncertainty
Estave et al., 2021⁸	“When I get a migraine, it is quite severe. The day of the migraine I can’t maintain any normal activities. The pain is so severe. I can’t work, can’t take care of my kids, can’t take carpools. Have to sit in a dark room and can’t do anything. It’s a loss of a day. I am losing a day of my life”			Embodied disruption and uncertainty
Finore, 2012³⁰	“I think that just being aware of when my shoulder was like this, or like this, and the tension that I was keeping,…”	Increased awareness; Increased mastery; The relationship element; Lifestyle development; Taming fear; Measured efficacy	Increased body awareness and self-regulation; Shift from medication to self-management; Understanding and identifying triggers	Embodied disruption and uncertainty
Finore, 2012³⁰	“The fact of going through the treatment and the exercises I became more aware and more focused on my migraines…”			Embodied disruption and uncertainty
Flynn et al., 2024³¹	“…My speech becomes very confused and then it’s the same with numbness down one side of the body and issues with my vision… Like pain and in my temples or behind my eyes… I’ll get quite dizzy or I’ll feel very faint as well.”	Migraine characteristics, Self-management, Clinical management, and impacts	Complex and debilitating physical symptoms; Identification and management of triggers; Non-medical coping strategies	Embodied disruption and uncertainty
Flynn et al., 2024³¹	“kept a log of everything I ate, trial and error method, lifestyle is a huge factor… Weight-training… Meditation.”			Embodied disruption and uncertainty
Gerstein et al., 2023³²	“I cannot form my words. The word is there. I see the word in my head, but when I try to say it, it just does not come out…”	Cognitive symptoms across phases of the migraine attack; Co-occurrence of multiple cognitive deficits; Impairments to receptive language, language production, and speech production	Language and communication breakdown; Cognitive impairment (attention, executive function, and mental clarity); Memory disruption and long-term cognitive concerns	Embodied disruption and uncertainty
Gerstein et al., 2023³²	“I always notice that, as pain increases, cognitive function goes down. It’s directly related. But as pain levels are really high, I sometimes get stuck in a circular pattern of thinking, where I’ll just say the same thing over and over and I do not know what’s going on.”			Embodied disruption and uncertainty
Hareendran et al., 2017³³	“Because when I have migraines it’s very tough for me to drive, I mean I’ve literally stopped and had to vomit…”	Difficulty with performance of daily activities; Variability of symptoms and impact across days; Relevance and clarity of items to patient experience	Migraines severely impair physical functioning (e.g., driving, nausea) and sensory tolerance, leading to social withdrawal and a need for isolation	Embodied disruption and uncertainty
Hareendran et al., 2017³³	“…I could, but if I’m having a migraine it’s very difficult to sit there and—I don’t even want to hear anyone talk, I just want to be in a dark room, lying down”			Embodied disruption and uncertainty
Hareendran et al., 2018³⁴	“If I get up in – if I’m laying in bed … my head will just start throbbing worse.”	Physical functioning (acts and tasks); Social and leisure functioning; Emotional functioning; Burden on relationships, routines, and activities	Severe migraines limit basic movement and necessitate rest; Migraines disrupt family interaction and caregiving responsibilities; Migraines cause social withdrawal and avoidance	Embodied disruption and uncertainty
Hareendran et al., 2018³⁴	“My children wanted to come over … and I just texted ‘headache.’ I don’t even talk.”			Embodied disruption and uncertainty
Heidari et al., 2022³⁵	“My migraines are so severe that I have been hospitalized (in] the past 3 years, and I am unable to work.”	Quality of life and health status; Disease Condition; Negative societal response;Healthcare and medications; Support	Life is ruled by the migraine; Migraine creates a shared burden for the family unit; Chronic migraine is delegitimized in medical and professional settings	Stigma and social legitimacy
Heidari et al., 2022³⁵	“My biggest frustration is at work where my supervisor has absolutely no clue about migraines and does not understand why I have to stay home ‘because of a headache. Therefore, unless I am vomiting or have impaired vision, I will come to work with a migraine,…”			Stigma and social legitimacy
Huddleston et al., 2018³⁶	“It’s good to always be able to go back and reference the material…”	Understanding and Implementing ACT; Improved Migraine Management; Usefulness of Manuals; Overall Workshop Experience; Workshop Challenges and Areas of Improvement	Empowerment through incremental behavior change; Value of accessible and reusable educational resources; Importance of inclusive and supportive group facilitation	Coping and identity work
Huddleston et al., 2018³⁶	“The facilitators made it to where everyone felt included and nobody felt excluded.”			Coping and identity work
Knauf et al., 2024³⁷	“Well, I also have my supervisors, who simply support me… And I was the first one who could regularly work from home.”	Psychosocial working conditions influencing migraine self-management at work; How migraine self-management at work was affected by the COVID-19 pandemic	Perceived lack of systemic support undermines migraine care; Specialist care is viewed as more credible and effective than general practice; Desire to identify underlying causes reflects dissatisfaction with symptom-based treatment	Embodied disruption and uncertainty
Knauf et al., 2024³⁷	“My employment contract says that I only get my salary when I’m working. So when I’m sick, I don’t get paid… which is why I always go to work.”			Embodied disruption and uncertainty
Lo et al., 2022³⁸	“I guess in terms of my physical health, my sort of fitness, it’s impacted on that. Um, in that I feel that I’ve put on weight and I’m not as fit as I used to be…Um I think sometimes because I overeat because of feeling so low about the migraines”	Migraine symptoms; Interictal burden; Behavioural and lifestyle changes; Changes to work and daily activities; Psychological impact and burden	Loss of physical health and fitness due to migraine-related lifestyle changes and emotional coping mechanisms; Disruption of professional identity and loss of career opportunities due to debilitating migraine symptoms; Constant underlying anxiety and hypervigilance between migraine attacks	Embodied disruption and uncertainty
Lo et al., 2022³⁸	“I had a successful art business…that’s gone be-because I can’t work on it. I used to run a gallery with three other artists…They asked me to leave because of the migraine.”			Embodied disruption and uncertainty
Rutberg et al., 2009³⁹	“It hurts a lot when the needles penetrate the skin and they stimulate them and all, it really hurts.”	Experiences during and after acupuncture treatment	Acupuncture alleviates migraine symptoms (e.g., pain, vision loss, freezing sensations) and restores bodily function; Patients perceive acupuncture as a natural, self-driven healing process, enhancing bodily autonomy; Treatment fosters deep relaxation, emotional uplift, and mental calm	Embodied disruption and uncertainty
Rutberg et al., 2009³⁹	“It helps … I don’t need to suffer from headache and nor from the loss of sight, since I have the classic form of migraine.”	Experiences during and after acupuncture treatment		Embodied disruption and uncertainty
Mangrum et al., 2024⁴⁰	“I cannot walk because I’m dizzy and I cannot walk around because I’ll throw up because too much motion on my stomach will make me throw up.”	Physical function in migraine; Cognitive function in migraine; Psychosocial function in migraine; Emotional and psychological experiences in migraine; Management of migraine	Severe physical limitations during attacks; Transportation challenges due to unpredictability of migraine; Exercise as both a relief and trigger	Embodied disruption and uncertainty
Mangrum et al., 2024⁴⁰	“I’ve tried to adopt, let me call it, more of a can-do attitude … I try to keep a positive kind of spin. Like, I ask myself, instead of ‘what cannot I do,’ ‘what can I do?’”			Embodied disruption and uncertainty
McGinley et al., 2025⁴¹	“It [sensitivity to light and sound] just becomes even more intense.”	Pre-headache; Headache; Post-headache; Interictal period	Migraine begins before the pain with overwhelming sensory sensitivity; Emotional and behavioral changes precede and accompany migraine episodes; Migraine impairs cognition and narrows focus to survival	Embodied disruption and uncertainty
McGinley et al., 2025⁴¹	“Immediately after, I feel exhausted, completely worn down…”	Pre-headache; Headache; Post-headache; Interictal period		Embodied disruption and uncertainty
McInnarney et al., 2024⁴²	“I still feel lots of health professionals do not understand migraines very well. It would be nice if they understood that people have different symptoms…”	Patient perception of health professionals’ knowledge of migraine; The presence of stigma within medical practice; Systemic barriers to accessing effective health care.	Perceived knowledge gaps among healthcare providers; Dismissal and delegitimization of migraine experience; Inequities in gendered healthcare experiences	Stigma and social legitimacy
McInnarney et al., 2024⁴²	“[I want] better access to neurologists. I cannot afford to see one privately.”			Stigma and social legitimacy
Meyer, 2002⁴³	“If I go out, I ask what kind of wine, … if it’s something I’ve had to drink before and I know it doesn’t bother me, I will have it. But, if it’s a brand that I’ve never heard of, I don’t try it. Because I don’t want to end up triggering a headache.”	Owning the label; Making the connections; Watching out; Assigning meaning to what is; Calculating the risk; Staying ready; Monitoring the results; Deciding what to do; Acting to maximize function	Hypervigilance and preparation for potential migraine triggers; Reliance on embodied intuition to detect early signs; Constant adaptation of behavior to minimize risk	Embodied disruption and uncertainty
Meyer, 2002⁴³	“There was something definitely very wrong—and I mean, I was so exhausted, plus, I was having headaches all the time, I was convinced I had cancer of some sort.”			Embodied disruption and uncertainty
Moloney et al., 2006⁴⁴	“One thing that I noticed …to figure out what’s the difference between a regular headache and a migraine…the pain instead of getting better …is, if the pain very quickly escalates.”	Shifting Headache Patterns; Predicting, Preventing, and Controlling Headaches; Keeping on the Move	Seeking control through self-monitoring and trigger avoidance; Early and long-standing personal experience with migraines; Difficulty distinguishing migraines from other types of headaches	Embodied disruption and uncertainty
Moloney et al., 2006⁴⁴	“I do an awful lot to try to control them on the front end from meditation, relaxation, Tylenol. . . Avoiding situations that would bring [a headache] on over the years.”			Embodied disruption and uncertainty
Morgan et al., 2016⁴⁵	“…I tried so many medications and they weren’t working, so I wanted to try something different, to see if it would help. You know, just trying anything.”	Prior perceptions and expectations of treatment; Experience of the therapy; Content, delivery and changes	Exhaustion With pharmacological approaches and openness to alternatives; Initial skepticism toward psychological interventions; Practical application of CBT techniques in daily life	Embodied disruption and uncertainty
Morgan et al., 2016⁴⁵	“Sometimes when I have that migraine, you do get these really like ‘churney’ thoughts that are kind of pain related but you often get like…if you’re anxious …so I think having the cognitive behavioural therapy kind of helps for those moments.”			Embodied disruption and uncertainty
Ng-Mak et al., 2011⁴⁶	“Whenever I’m not as sensitive to light or to sound, that’s when I know that the headache’s leaving and after I come out of it I’ll usually feel lethargic…”	Fatigue/low energy; Cognitive difficulties; Sensory sensitivities; Pain persistence; Emotional effects; Functional impairment; Postdrome symptoms; Postdrome impacts	Pain relief marks the end of migraine, but post-migraine symptoms persist; Post-migraine symptoms include fatigue, dizziness, and lightheadedness; Nausea and gastrointestinal discomfort often continue after the pain ends	Embodied disruption and uncertainty
Ng-Mak et al., 2011⁴⁶	“…I can’t eat until I don’t know, maybe two hours after the initial migraine, I still can’t keep anything down until about then.”			Embodied disruption and uncertainty
Palacios-Ceña et al., 2017⁴⁷	“Helplessness, the sensation of wanting to but not being able to… Others go out… you are completely worn out without even leaving home, that is what it's like…”	The shame of suffering from an invisible condition; Treatment: between need, scepticism and fear; Looking for physicians’ support and sincerity and fighting misconceptions	Chronic uncertainty and loss of control; Frustration with the medical system and Diagnostic process; Mistrust in treatments and trial-and-error approaches	Embodied disruption and uncertainty
Palacios-Ceña et al., 2017⁴⁷	“It becomes frustrating. At first, I had a scan, then a magnetic resonance, I had many tests and they found nothing! And they told me that everything was normal. I couldn’t prove it and even if they do tests, they can’t demonstrate anything. I was embarrassed to go to the doctor, it was as though I was wasting their time.”			Embodied disruption and uncertainty
Parker et al., 2023⁴⁸	““I had to start learning how to cope with it. This is a part of me and so I listen. When I feel a migraine coming on or headache coming on, I have to shut everything down and just lay there until it passes and sometimes it comes like a wave…”	Coping; Loss; Illness burden; Misunderstood	Chronic adaptation and personal coping mechanisms; Severe disruption to daily functioning and independence; Social isolation and relational strain	Embodied disruption and uncertainty
Parker et al., 2023⁴⁸	“…My parents and I have gotten into disagreements of like, oh, I haven’t done anything …they want to know what’s going on. I keep telling them it’s literally just migraines. And my dad is sort of old school, so he is like, “It’s a headache. So how bad could it be?”	Coping; Loss; Illness burden; Misunderstood		Embodied disruption and uncertainty
Persson et al., 2023⁹	“The pain is central to the head”	First physical sensations; Automatic reactions; Acts according to the interpretation	Intensely internal and sensory pain experience; Unpredictable onset and hypervigilant symptom monitoring; Struggle for control and internalized blame	Embodied disruption and uncertainty
	“… in the middle of the head [it] is too large, it pushes”
	“[A] sharp pain will just slam into my head and then I think I no longer exist”
Persson et al., 2025⁴⁹	“I’ve had migraines since I was a teenager. I don’t feel like I’ve gotten any help. So I was so happy that there would finally be help…”	Experiences before treatment; Helpful elements of treatment; Limitations in treatment; Changes after treatment	Frustration with lack of information and recognition in the past; Desire for better understanding and validation from others; Appreciation towards flexible and self-directed approaches	Embodied disruption and uncertainty
Persson et al., 2025⁴⁹	“I have learned more about the disease itself, for example if you are going to take emergency medicine during a migraine attack, you should always take it at the first symptom…”			Embodied disruption and uncertainty
Peters et al., 2003⁵⁰	“… I would say that the migraines got noticeably worse in the last five or six years …”	Management strategies; The four stages of decision-making- Headache severity; Evaluation; Decision; Behaviour	Fluctuating course and functional burden of migraine; Trial and error with limited relief; Conditional willingness to use medication or alternatives	Embodied disruption and uncertainty
Peters et al., 2003⁵⁰	“although migraines are bad, I don’t know if I’d want to take medication every day…”			Embodied disruption and uncertainty
Peters et al., 2004¹¹	“…nothing has ever indicated to me that anybody is interested and that there is any medical help…”	Healthcare use; Medication use; Alternative therapies; Social support; Lifestyle and self-help	Perceived inadequacy of general medical support; Desire for root cause exploration over symptomatic treatment; Value placed on specialist care for its perceived expertise and diagnostic capability	Embodied disruption and uncertainty
Peters et al., 2004¹¹	“…I would try those [herbal remedies] you know, so long as they; it was natural vegetation and not a drug as such…I don’t think they have any negative effects…”			Embodied disruption and uncertainty
Peters et al., 2005⁵¹	“… over the counter treatments work for me”	Headaches; Headache impact; Headache as a health issue	Perceived lack of legitimacy or urgency in migraine care; Uncertainty and confusion about diagnosis; Self-management through preparedness and medication timing	Embodied disruption and uncertainty
Peters et al., 2005⁵¹	“…I’m not very good at necessarily differentiating between the migraine and the bad tension headaches… I have never been a hundred percent certain of the differentiation between the two…”	Headaches; Headache impact; Headache as a health issue		Embodied disruption and uncertainty
Ramsey, 2012⁵²	“We want to be taken serious by health care providers, it’s not just that we’re tired and whiney and don’t have anything better to do than complain about our ailments. It’s… It’s difficult to live with these headaches and when we’re seeking relief…”	Recalling the significant experience that reshaped life; Experiencing self as vulnerable, with unmet expectations, unfulfilled relationships, and regrets; Being overcome by unrelenting, torturous pain magnified by intrusion from the outside world	Migraine disrupts daily functioning and forces survival-mode coping; Feeling dismissed and unheard by healthcare; Pain compromises self-worth and performance expectations	Embodied disruption and uncertainty
Ramsey, 2012⁵²	“It’s very difficult because as the mother you are the primary care giver and it’s very difficult to think that there are times when you can’t take care of your child. But, not only can you not physically care for your child, suddenly their taking on that role as a caregiver for you…”			Embodied disruption and uncertainty
Ruiz de Velasco et al., 2003⁵³	“And when the pain is very, very severe, there are times when I can’t get to sleep because of the pain.”	Symptomatic aspects, social aspects; Work and studies; Family relationships; Social relationships; Emotional aspects	Overwhelming physical pain and sensory sensitivity; Reliance on and frustration with medication; Cognitive impairment and mental fog	Embodied disruption and uncertainty
Ruiz de Velasco et al., 2003⁵³	“It affects my daughters a lot… They can’t count on their mother while the attack lasts.”			Embodied disruption and uncertainty
Rutberg et al., 2012⁵⁴	“The pain is terrible, it’s terrible when you’re having an attack… You would want to take [the pain] away so you do not have to feel it. You would, if it were possible, but you can’t.”	Being obliged to endure a life accompanied by an unpredictable and invisible disorder; Being besieged by an attack; Being temporarily incapacitated	Migraine as a totalizing and debilitating force; Anticipatory anxiety and life avoidance; Loss of control and personal autonomy	Stigma and social legitimacy
Rutberg et al., 2012⁵⁴	“If migraine affects the whole head, it affects memory… I think, ‘What did they say now?’ I do not remember. It is like I cannot take it in.”			Stigma and social legitimacy
Rutberg et al., 2013⁵⁵	‘‘I have really been helped by this [the physical therapy], I can still get a migraine… But this acupuncture treatment was a boost, it is as if I have entered a new phase in life …’’	Meeting a physical therapist with professional tools and a personal touch; Investing time and energy to feel better; Relying on the competence of the physical therapist	Healing as a relational, emotional, and embodied process; Physical therapy as a natural and empowering alternative; Evolving trust and respect for the therapist’s expertise	Embodied disruption and uncertainty
Rutberg et al., 2013⁵⁵	‘‘[My physical therapist] knows my background and everything [about my illness]. We usually talk a lot about stress and stress management and he notices when I am stressed… It is extremely valuable that he knows all about me…’’			Embodied disruption and uncertainty
Scaratti et al., 2018⁵⁶	“I only talk about this with a close colleague, because his sister too suffers from headache… a very severe headache… And so she looks at me and understands when I have a headache. Social life, of course, is affected a lot. I am isolated from almost all of the people I know…”	Disclosing or concealing headache and the dilemma of isolation; Concerns of medication addiction; Anxiety, use of non-pharmacological therapies	The burden of social isolation and stigma; Medication dependency as a coping strategy; Loss of quality of life and emotional exhaustion	Stigma and social legitimacy
Scaratti et al., 2018⁵⁶	“I also tried acupuncture and so many things … homeopathy also, but they haven’t worked that we”			Stigma and social legitimacy
Schulz et al., 2023⁵⁷	“It’s [neck] tight… And then it just starts to become a pain and then it slowly increases and then it goes up and then it goes up and then it’s a migraine [attack].”	Timing of neck pain and migraine attacks; Causality beliefs between neck pain and migraine; Burden of neck pain and migraine; Experiences with treatment; Mismatched perspectives	Neck pain as a migraine precursor or trigger; Impact of neck pain on migraine severity and daily life; Preventive self-management strategies	Embodied disruption and uncertainty
Schulz et al., 2023⁵⁷	“Well, I used to just go get physio after I’d had a migraine to try and unlock things a bit. So, it was more like a reactionary treatment.”			Embodied disruption and uncertainty
Seage et al., 2024⁵⁸	“It is kind of like an exploding head feel and it was always above my right eye.”	Identity of migraines; Perceived cause of migraine; Perceived timeline of migraine; Perceived cure/Control for migraine; Perceived consequences	Personalized migraine descriptions and sensory experiences; Distinguishing migraines from regular headaches; Perceived triggers: stress, screen use, and specific foods	Embodied disruption and uncertainty
Seage et al., 2024⁵⁸	“I have been doing reflexology and umm changing my mattress. Little things like that, because I have not found physiotherapy or medicine have helped in the long term so…”			Embodied disruption and uncertainty
Seo et al., 2021⁵⁹	“For me it is the gain of weight. I have gained 15 kg weight […] I cannot lose it again”	Reducing the frequency and severity of migraine attacks; Improved quality of life; Physical adverse events include weight change, stomach problems and fatigue	Desired outcomes: reduced frequency, intensity, and life disruption; Burden of side effects and medication trade-offs; Concerns about safety, comorbidities, and drug interactions	Embodied disruption and uncertainty
Seo et al., 2021⁵⁹	“I was on it in high school and I had to come of it because I just couldn’t concentrate, I’d just fall asleep in class and I wouldn’t have done my exams otherwise”			Embodied disruption and uncertainty
Skomo et al., 2008⁶⁰	‘‘I take 400 mg of ibuprofen. If I can catch it I am fine. If not,… I just have to go home. I have to be in a cold dark place, no sounds, no smells, no light, nothing.’’	Coping with managing migraine; Support; Social role functioning; Physician’s attitudes toward and treatment of migraine; Roles of pharmacist; Communication barriers with pharmacists; Eliminating barriers to communication with pharmacists	Burden of self-management and coping strategies; Invisible suffering and invalidation; Disempowerment in clinical encounter	Stigma and social legitimacy
Skomo et al., 2008⁶⁰	‘‘I think if a pharmacist took the time to talk to me about anything I had to deal with a disease state or my migraine or someone who invested time in me it would be a worthwhile experience.’’			Stigma and social legitimacy
Speck et al., 2019⁶¹	“At first some of my friends would think I didn’t want to really go out with them because, you know, it [cancelling] would happen repeatedly.”	Interfere with family, friends, and other; Interfere with leisure time activities; Difficulty performing work or daily activities	Loss of social participation and connection; Disrupted work capacity and role performance; Functional disempowerment in routine life	Embodied disruption and uncertainty
Speck et al., 2019⁶¹	“I--really I love to play tennis and golf and read, and so it [migraine attacks] affects all of those.”			Embodied disruption and uncertainty
Speck et al., 2020⁶²	“It’s beyond light sensitivity, it’s even almost having your eyes open at that point that it hurts. Yeah, almost any kind of light, but bright light is almost is in – is intolerable”	Migraine symptoms; Feelings/concerns; Work functioning; Social functioning; Energy/vitality; Sleep/mood	Sensory overload as a core feature of migraine experience; Functional disruption and withdrawal from daily life; Emotional toll causing loss of joy, identity, and relationships	Embodied disruption and uncertainty
Speck et al., 2020⁶²	“It’s hard for me to concentrate and to have like a conversation, you know, with someone else”			Embodied disruption and uncertainty
Varkey et al., 2013⁶³	“If someone were to say that if you exercise for 40 sweaty minutes every day, instead of 20 as I did, that I should exert myself more every day, then I’m not sure I would have the strength, I would want a guarantee that it will really have an effect.”	Avoiding migraine triggers; Introducing migraine inhibiting strategies; Balancing and being in control	Avoidance of everyday activities to prevent migraines; Constant self-monitoring and planning ahead to reduce exposure to triggers; Acceptance of limited control while maintaining empowerment	Embodied disruption and uncertainty
Varkey et al., 2013⁶³	“Mm. You sort of have to be the one who is in control somehow. Like ‘I don’t think I can come (event), as it will trigger my headache’, so it’s better to take part for as long as you can and leave early.”			Embodied disruption and uncertainty

3.4.1. Embodied Disruption and Uncertainty

Migraine was repeatedly described as an intrusive and unpredictable force that disrupted bodily integrity, time, and social participation^31,44,48,49 Participants characterized attacks as sudden, uncontrollable, and devastating:

“They try to understand, but sometimes they just happen so suddenly it seems to the outside perspective that I’m just very melancholy and depressed.”⁴⁸

“[My migraine attacks] can be debilitating at times, and I absolutely cannot do anything. I have to stop everything, can’t work, can’t interact. I just have to go to my room and just sit in the dark and lay there … and it can take 24 to 48 hours. And if it is extreme I have to go the hospital and get a shot…”⁸

This uncertainty undermined individuals' sense of agency, leaving them in a perpetual state of anticipation and contingency planning. The inherent unpredictability also destabilises one’s capacity to present a reliable self in social interaction, resulting in missed commitments and abrupt withdrawals, which threaten one’s valued identities as partners, parents, or professionals.

3.4.2. Negotiating Stigma and Social Legitimacy

Across cultural contexts, individuals described migraine as an invisible and delegitimized condition. They were often dismissed by clinicians, trivialized by colleagues, or misunderstood by family members.^35,40,48,56 One participant reflected:

“I went to 20 doctors in eight years, and they are basically like, ‘You’re fine. It’s all in your head. You’re too young to be sick.’ … they dismissed everything. So, that was really frustrating.”⁴⁰

“And my dad is sort of old school, so he is like, “It’s a headache. So how bad could it be?” I’m like, “Oh, quite bad.”. . . For other people that don’t really know what I’m exactly going through, they’re pretty much just pretty dismissive.”⁴⁸

Such reflections draw attention to how legitimacy itself is constructed in interaction. Migraine sufferers were forced into repeated negotiations of authenticity and credibility. Delegitimisation eroded self-concept, producing feelings of shame and isolation and secondary psychological distress.

3.4.3. Coping, Adaptation, and Identity Work

Despite disruption and stigma, participants actively engaged in coping and identity reconstruction. Strategies included avoidance of triggers, lifestyle modifications, complementary therapies, and reframing the meaning of migraine.^9,63 Participants remarked:

“I have been using some of the meditations and breathing at work when I get overwhelmed or stressed and it helps me calm down. I can’t just leave work or go lie down, but I can stop and breathe and reset.”²⁹

“Specifically, I think 1 of the things that I’ve done is, in addition to relaxing, is just kind of coming to grips with the fact that I have to accept this path and so, with the acceptance I think that it’s (my migraine pain) kind of not as big of an issue as it was once before.”³⁶

“I avoid definitely long-term tablet or computer use … I love music, but I find myself listening to much less than I used to or even at lower volumes … I very much avoid stressful situations, confrontation of any sort, maybe avoid driving, because that’s sort of a stress trigger.”⁴⁰

These accounts reflect how sufferers live their illness identity through narratives of resilience, self-discipline, or acceptance. Biographical disruption is not only a rupture but also an opportunity for renewal as several studies described participants who reframed migraine as a source of self-knowledge or strength.

3.4.4. Seeking Care and System Navigation

Participants’ experiences with healthcare were mixed. While some valued supportive clinicians, many reported frustrations at diagnostic delays, therapeutic nihilism, or fragmented services²²:

“If the GP doesn't consider it sufficiently important so as to refer you to a neurologist, to perform a CT scan, a magnetic resonance or whatever it takes, you're stuck. And for years and years. I had to be hospitalised eight times before I was finally referred to the specialist. It sounds pretty bad, right? After 9 years.”⁴⁷

“When I met the chiropractic doctors, I noticed positive impact on everything and I noticed that they are very excellent. I trusted [the chiropractor] would understand, and he would always shift [his approach] based on whatever I was saying.”²⁴

These verbatims reflect disillusionment with medical authority, intersecting with the broader themes of stigma and legitimacy. Notably, healthcare encounters became a primary site where delegitimisation was reproduced, reinforcing the symbolic struggles participants faced in everyday life.

3.5. Line-of-Argument Synthesis

Across the synthesis, migraine as a condition that is both biographically disruptive and socially negotiated. Its unpredictability intrudes on daily life and destabilises continuity of roles; its invisibility and trivialisation force individuals into ongoing negotiations of legitimacy. In turn, sufferers develop adaptive strategies and reconstruct their identities in ways that preserve meaning and agency. Migraine is not simply a neurological disorder but a lived social identity: unpredictable, chronic, and continually reshaped through interaction.

4. Discussion

This meta-ethnography synthesized 46 qualitative studies examining the lived experience of adults with migraine. Across diverse contexts, our synthesis reveals that migraine can be a profoundly disruptive force that alters one’s sense of self, reshapes daily routines, and impinges upon social relationships. Bury’s (1982) theory of biographical disruption, developed in the context of chronic illness, argues that chronic conditions disrupt the taken-for-granted structures of everyday life, calling into question identity, roles, and the future.²⁰ This aligns well with the findings: migraine is unpredictable, invisible, and stigmatised, leading to disruptions across personal, emotional, and social domains.

Participants’ accounts highlighted how migraine disrupts the social body, not only through reduced participation in social life but also through stigma and delegitimisation. The invisibility of migraine contributed to a pervasive sense of being misunderstood or dismissed—by colleagues, health professionals, and even close family. As highlighted by Bury (1982), chronic illness often initiates a loss of social recognition and coherent social roles.²⁰ Migraine sufferers frequently felt they had to “pass” as healthy or suppress their condition to avoid judgment, reinforcing emotional distress and social withdrawal.

In response to this biographical disruption, participants engaged in varied forms of biographical repair and meaning-making. Some redefined their identity to incorporate migraine as a part of themselves, while others found empowerment through advocacy or reframed their experience in terms of resilience and adaptation. Coping strategies ranged from practical (e.g., managing triggers) to existential (e.g., acceptance and reconfiguration of self-expectations). This demonstrates how individuals living with migraine work to restore coherence to their life narratives, albeit within the constraints imposed by the condition.

Our findings also point to the intersectionality of disruption, where gendered expectations (e.g., women’s caregiving roles), occupational demands, and sociocultural attitudes toward invisible illness mediate the impact of migraine. Most participants were women, which likely reflects both the epidemiology of migraine and the heightened social and emotional labour required to manage chronic, debilitating illness within gendered contexts.

This meta-ethnographic synthesis advances our understanding of migraine as a complex, socially embedded condition. It highlights the limitations of traditional biomedical models that focus solely on symptom management while neglecting the pertinent existential and relational challenges experienced by individuals with migraine. Our findings resonate with the notion of embodied vulnerability, where participants’ narratives reflect not only the sensory disruptions of migraine but also existential concerns related to control, identity, and relational connection. This synthesis thus contributes to a more holistic understanding of migraine as a biopsychosocial phenomenon and invites clinicians, researchers, and policymakers to attend to the lived dimensions of this condition.

4.1. Limitations of Review

Several limitations must be acknowledged. First, the synthesis is limited to studies published in English, which may introduce a degree of cultural bias, especially given the global prevalence of migraine. Second, while we included studies across a range of cultural and clinical contexts, most participants were women, likely reflecting the higher prevalence of migraine among women and a gendered pattern in qualitative research participation. This may inadvertently limit the generalisability of findings to men or gender-diverse individuals. Third, there was variation in the methodological quality and reporting standards of the included studies. Although all met basic quality thresholds, some provided more detailed engagement with participants’ voices and reflexivity than others. Additionally, two of the included sources were doctoral dissertations rather than peer-reviewed journal articles; although both met all other eligibility criteria and the same CASP quality threshold, the absence of formal peer review is acknowledged as a potential limitation on the evidentiary weight of those two sources. Fourth, differences in qualitative methodology (e.g., grounded theory vs. phenomenology) and aims across studies may have led to variability in the depth and focus of reported experiences. Finally, while meta-ethnography enables conceptual synthesis, it inevitably involves interpretation. Our findings are shaped by the lens and disciplinary backgrounds of the review team. We sought to mitigate interpretive bias through iterative consensus, the grounding of interpretations in first-order participant quotes, and strategies to promote reflexivity and rigor,⁶⁵ but we do acknowledge the context-bound nature of meaning and that alternative syntheses are possible.

5. Conclusions

The findings of this meta-ethnographic review and synthesis revealed that migraine is not simply a recurrent neurological event but a condition that pervades emotional life, disrupts identity and social roles, and it is often marked by stigma and misunderstanding. The experience of living with migraine is deeply embodied and socially negotiated, involving cycles of disruption, adaptation, and meaning-making. Future research should explore the lived experience of underrepresented populations (e.g., men, non-binary individuals, minority ethnic groups), as well as the intersection of migraine with other chronic or invisible conditions, and the co-production of psychologically-informed, patient-centre care approaches in the context of migraine management.

Supplemental Material

Supplemental Material - The Social Life of Migraine: A Meta-Ethnography of Lived Experience in Adults With Migraine

Supplemental Material for The Social Life of Migraine: A Meta-Ethnography of Lived Experience in Adults With Migraine by Qin Xiang Ng, Kevin Xiang Zhou, Chloe Ying Xuan Lin, Claire Kar Min Chan, Sassidaran Murugasu, Asher Yu Han Ang, Gurshant Singh Sandhu, Yu Liang Lim and Ansel Shao Pin Tang in Health Services Insights.

Footnotes

ORCID iD

Qin Xiang Ng

Author Contributions

All authors certify that they meet the ICMJE criteria for authorship. The manuscript, including related data, figures and tables has not been previously published, and the manuscript is not under consideration elsewhere. All authors read and approved the final manuscript.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

This study is a systematic review and no original data were generated. All data analyzed in this study were obtained from publicly available sources.*

Registration and Protocol

The study protocol was pre-registered in PROSPERO.

Registration

CRD420251133779

Supplemental Material

Supplemental material for this article is available online.

Appendix

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