Can a self-diagnosis be valid? Using narrative medicine to understand mental healthcare inequities.
The term “self-diagnosis” has absorbed a connotation inviting dismissal and criticism. It is often only used to refer to young social media users convinced they have “x” disorder after viewing short-form content presenting a single telltale sign or a brief list of symptoms, or playing a few online quizzes (McVay, 2023). Such scenarios rightfully garner criticism about how this practice can minimize, normalize, romanticize, and misconstrue mental illness (McVay, 2023 Psychiatrists have released extensive warnings about how a self-diagnosis could leave lasting consequences on wellbeing (McVay, 2023). But there’s a vast range of experiences with self-diagnosis, and I invite you to apply a narrative medicine lens to understand how they reflect upon our healthcare system.
“I’ve been a therapist for 13 years. Along with so many other people, I made a self-diagnosis of ADHD in 2021 during the pandemic.”
Priscilla Dean, LCPC
The general purpose of a diagnosis is to help patients characterize their challenges related to mental wellbeing and access appropriate interventions. Psychologists, psychiatrists, clinical counselors, and other diagnosticians are, in theory, trained to provide an accurate clinical diagnosis considering not only a patient’s background, but also by being able to make nuanced distinctions from similar psychiatric diagnoses.
However, at times self-diagnosis may be the only feasible option. Discriminatory policies can render a formal mental disorder diagnosis a barrier to employment, housing, adoption, child custody, autonomy, and citizenship (Mental Health America, 2017). Gender-affirming care is outlawed in many regions where youth still navigate gender dysphoria, anxiety disorders, depression, suicide, and trauma-related disorders (GATE, 2024; Harvard Law Review, 2021). Some youth are unable to access mental healthcare because of stigmas surrounding mental illness purveyed within their families, whom they depend on for financial and physical access to healthcare (Ahad et al., 2023). Even if free services are available, people experience shame, conflict, and fear of being discovered by people in their community for attempting to seek mental healthcare. Insurance and lower-cost options often do not extend to more intensive evaluations or long-term follow-ups for a specific diagnosis, posing a financial barrier (Moitra et al., 2023; Saraceno & Saxena 2002).
The DSM lists all mental illnesses and disorders formally recognized by the American Medical Association (APA, 2024). The ICD codes are developed by the World Health Organization (WHO, 2024). These handbooks list diagnostic criteria, and are the most utilized by mental healthcare professionals internationally.
Patients’ care-seeking from formal institutions may also be deterred by mistrust due to the discriminatory history of psychiatry. Historically, foundational psychology research has been based on white, cishet men, which also describes much of the early demographic makeup of the profession (Roberts et al., 2020). This has resulted in shortcomings when diagnosing underrepresented patients. For example, research indicates Black children with ADHD are disproportionately misdiagnosed with oppositional defiant disorder (ODD) and conduct disorder (CD) rooted in racist stereotypes adultifying Black boys and depicting violence and aggression (Fadus et al., 2019). Autism spectrum disorder is also poorly identified in racial minorities, non-binary patients, and women (Diemer et al. 2022). Psychiatry had once concocted diagnoses like “hysteria” and “homosexuality”, that permitted institutions to subjugate non-heteronormative relationships and gender expressions under the guise of “psychiatric care” (Dusenberry, 2018; King, 2019). These classifications systematically bolstered misogynistic stereotypes and homophobia that results in women and/or LGBTQ+ patients’ symptoms being dismissed or overlooked.
Given the state of our mental healthcare system and mental health inequities, it is understandable why people would consider a self-diagnosis. Pulling from my own experiences and a few other narratives, here is how some self-diagnosis experiences differ from the widely condemned image I first introduced, and precautions to take if self-diagnosing:
Fundamentally, there’s an understanding that a self-diagnosis is a last resort after exhausting all other options to attaining professional evaluations (Fellowes, 2024). A self-diagnosis can serve as a cathartic, healing identification that helps people feel less isolated, explore why they face certain challenges and differences, and how they can safely improve their quality of life (Fellowes, 2024). Self-diagnosing is a lengthy, difficult, and potentially dangerous process. It involves thorough research of narratives from people with a clinical diagnosis, diagnosticians with an online presence, open-access professionally-developed screening tools, and/or medical literature (Mission Diverse, 2024; Fellowes, 2024)—but all with a critical eye. Regardless of how helpful and substantiated a person finds their self-diagnosis, they can remain cautionary and prepared to reevaluate it at any moment. The symptom profiles of many mental disorders can overlap heavily with each other, and with possible underlying nutritional, sleep-related, reproductive, and gut-related issues (Fellowes, 2023). Even the currently most understood mental illnesses, like depression and general anxiety disorder, contain many knowledge gaps because of how variably a single diagnosis presents in people of different cultural backgrounds, ages, genders, and sexes (Bailey et al., 2019; Alcalde et al., 2024). Therefore, self-diagnosis might be a less stable foundation for pursuing interventions that could be applied to a professional diagnosis. For example, some interventions for anorexia nervosa carry a risk of refeeding syndrome, which can be fatal (NAED, 2024).
A clinical diagnosis will always be ideal, but sometimes a self-diagnosis is valid. It’s important to engage with narratives reflecting inequities that lead people to seek a self-diagnosis, especially for current and aspiring mental health professionals, administrators, policymakers, and researchers. Centering these patients’ voices can guide reform for accessible, culturally-sensitive mental healthcare so people wouldn’t need to navigate the challenges of forming a self-diagnosis.
By Christina Zeng (she/her) | Blog Committee Member
FURTHER READING & OTHER PERSPECTIVES
Young voices on neurodiversity: a personal story
How self-diagnosis is helping autistic women make sense of their worlds
Research at UBC on how social media portrayals of mental illness can be misleading—even anecdotes from people with lived experiences exhibit discrepancies from diagnostic criteria. This only reinforces the importance of in-depth research and critical discretion when using lived experiences to help form a self-diagnosis.
Lay Perceptions of Self-Diagnosis as a Barrier to Mental Health Treatment-Seeking
Self-diagnosis of psychiatric conditions as a threat to personal autonomy
A Letter to The Cautious Survivors of Bad Therapy
RESOURCES
Free or Low-Cost Services in BC
List from First National Health Authority
Lower-cost, sliding scale, and free counselling services in Vancouver
References:
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Alcalde, E., Rouquette, A., Wiernik, E., & Rigal, L. (2024). How do men and women differ in their depressive symptomatology? A gendered network analysis of depressive symptoms in a French population-based cohort. Journal of Affective Disorders, 353, 1–10. https://doi.org/10.1016/j.jad.2024.02.064
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