“It’s All in Your Head”: Conceptualizing Symptom Invalidation in Healthcare—A Systematic Meta-Synthesis of Qualitative Research
About.
Symptom invalidation refers to “the process by which an individual is told they are wrong in their beliefs about their symptoms and/or are told they have ulterior motives for seeking care” (Bontempo, 2025, p. 11). Indeed, healthcare interactions resembling symptom invalidation was named “medicine’s silent epidemic” in a 2019 JAMA Neurology commentary (Burke, 2019). This assertion is supported by a recent systemic review of interactions resembling symptom invalidation showing a nearly 500% increase in studies on this topic from 1998-2000 to 2017-2020 (Hintz, 2023). Moreover, symptom invalidation is not benign. Two recent reviews of the qualitative literature demonstrate that healthcare interactions resembling symptom invalidation can lead to altered emotional states and beliefs (e.g., self-doubt, shame, suicidality), altered healthcare emotional states and beliefs (e.g., loss of trust, healthcare-related anxiety or trauma), altered healthcare behavior (e.g., under-reporting symptoms to clinicians, healthcare system avoidance), and diagnostic delay (Bontempo et al., 2025, Hintz, 2023).
Although referred to symptom invalidation by this research team, there remains considerable variability concerning how this phenomenon is referred to across the literature (Bontempo, 2022). In response, Bontempo (2025) synthesized the frameworks of invalidating environments (Linehan, 1993) and illness representations (Lau & Hartman, 1983; Leventhal et al., 1997, 1980, 1984) to analyze the narratives of 830 patients with endometriosis and forwarded the term symptom invalidation, defined as is at the first paragraph’s beginning. The concept of symptom invalidation was further illuminated when its consequences were uncovered in the systematic review of qualitative literature in Bontempo et al. (2025), which spanned 13 different diagnostically challenging conditions (though there were only literature for 11 of the 13 conditions).
Although the findings of Bontempo et al. (2025) were particularly revealing, there remains a need to validate the conceptualization of symptom invalidation forwarded in Bontempo (2025), given that it only engaged patients with endometriosis and thus the generalizability of this framework remains in question. To address the aforementioned gap–to lend further legitimacy to this conceptual framework–and move toward the development of a theory for symptom invalidation, we will be conducting a systematic review of studies to validate this conceptual framework among qualitative studies of patients with 17 different diagnostically challenging conditions. Thirteen of these 17 diagnostically challenging conditions were part of one of the systematic reviews of qualitative literature investigating the negative consequences of symptom invalidation across 13 diagnostically challenging conditions (Bontempo et al., 2025). These 13 diagnostically challenging conditions included dysautonomia, Ehlers-Danlos syndrome, endometriosis, fibromyalgia, Gulf War syndrome, irritable bowel syndrome, long COVID, lupus, mast cell activation syndrome, multiple chemical sensitivity, myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, and vulvodynia. However, at the time of the search, there were no publications on dysautonomia or mast cell activation syndrome, and thus yielded 11 rather than 13 diagnostically challenging conditions. However, for this systematic review, we are seeking to add attention-deficit/hyperactivity disorder (ADHD), chronic Lyme disease, myasthenia gravis, and functional neurologic disorder, yielding 17 conditions.
In sum, we are seeking to validate the conceptual framework advanced in Bontempo (2025), and will do so by conducting a systematic review leveraging the same search strategy for the more or less same diagnostically challenging conditions as was done in Bontempo et al. (2025). The larger purpose of the proposed review is to conceptualize this phenomenon of symptom invalidation and work toward developing a theory, which is currently missing from the literature.
For more information, please visit our preregistration of this review on Open Science Framework: https://osf.io/kp63v
Although referred to symptom invalidation by this research team, there remains considerable variability concerning how this phenomenon is referred to across the literature (Bontempo, 2022). In response, Bontempo (2025) synthesized the frameworks of invalidating environments (Linehan, 1993) and illness representations (Lau & Hartman, 1983; Leventhal et al., 1997, 1980, 1984) to analyze the narratives of 830 patients with endometriosis and forwarded the term symptom invalidation, defined as is at the first paragraph’s beginning. The concept of symptom invalidation was further illuminated when its consequences were uncovered in the systematic review of qualitative literature in Bontempo et al. (2025), which spanned 13 different diagnostically challenging conditions (though there were only literature for 11 of the 13 conditions).
Although the findings of Bontempo et al. (2025) were particularly revealing, there remains a need to validate the conceptualization of symptom invalidation forwarded in Bontempo (2025), given that it only engaged patients with endometriosis and thus the generalizability of this framework remains in question. To address the aforementioned gap–to lend further legitimacy to this conceptual framework–and move toward the development of a theory for symptom invalidation, we will be conducting a systematic review of studies to validate this conceptual framework among qualitative studies of patients with 17 different diagnostically challenging conditions. Thirteen of these 17 diagnostically challenging conditions were part of one of the systematic reviews of qualitative literature investigating the negative consequences of symptom invalidation across 13 diagnostically challenging conditions (Bontempo et al., 2025). These 13 diagnostically challenging conditions included dysautonomia, Ehlers-Danlos syndrome, endometriosis, fibromyalgia, Gulf War syndrome, irritable bowel syndrome, long COVID, lupus, mast cell activation syndrome, multiple chemical sensitivity, myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, and vulvodynia. However, at the time of the search, there were no publications on dysautonomia or mast cell activation syndrome, and thus yielded 11 rather than 13 diagnostically challenging conditions. However, for this systematic review, we are seeking to add attention-deficit/hyperactivity disorder (ADHD), chronic Lyme disease, myasthenia gravis, and functional neurologic disorder, yielding 17 conditions.
In sum, we are seeking to validate the conceptual framework advanced in Bontempo (2025), and will do so by conducting a systematic review leveraging the same search strategy for the more or less same diagnostically challenging conditions as was done in Bontempo et al. (2025). The larger purpose of the proposed review is to conceptualize this phenomenon of symptom invalidation and work toward developing a theory, which is currently missing from the literature.
For more information, please visit our preregistration of this review on Open Science Framework: https://osf.io/kp63v
Collaborators.
Kristina Bogdan, Ph.D. Candidate
John M. Bontempo, Director of Medical Writing (Retired)
John M. Bontempo, Director of Medical Writing (Retired)