🚨 I have my diagnosis »: when the label tells who we are
🔍💡 Social uses of diagnosis: understanding why so many people “go looking for” a label to define themselves and to be recognised — and how to welcome them without invalidating. 🧩 25 narratives analysed outside the medical office.
📌 More and more people are presenting with a diagnosis they have assigned to themselves, or a label found online, before any clinical opinion. This article sheds light on why: the diagnosis has become a way to tell one’s story, to understand oneself and to be recognised, in a context of difficult access to care. It helps to receive these narratives without invalidating or endorsing them, to distinguish a need for recognition from a request for care, and to adjust one’s welcoming posture. It is a substantive text, not a toolbox: it works on perspective rather than procedures.
Source :
📒 The truth about oneself: the social uses of diagnosis outside medicine
✍️ Lisandre Labrecque-Lebeau (Nursing Sciences, UQO ; CREMIS), Pierre Pariseau-Legault (Nursing Sciences, UQO ; CREMIS), Guillaume Ouellet (Social Work, UQAM ; CREMIS).2026📜🔗LINK to the source
1️⃣ ANALYTICAL SUMMARY
Context and issues — Diagnosis exceeds the medical office
Since the 19th century, biomedical categories have permeated common sense: we identify, describe and narrate ourselves more and more through them (p.14-15). The article studies the narrative use of diagnosis, formal and informal, as a way to "speak the truth about oneself." It is based on 25 semi-structured interviews conducted in Quebec with individuals identifying with neurodiversity, bodily diversity and/or sexual and gender diversity (p.14, 17-18). The sample is young (more than two thirds are under 40) and highly educated (p.18): the authors draw explicit limits from this, without claiming representativeness. Self-diagnosis — particularly of ADHD and autism — appears as an expanding phenomenon, still poorly theorised (p.17).
Contributions — Six ways to inhabit a diagnosis
The core of the text reveals six registers through which people appropriate a diagnostic category: investigating to "unearth" a supposed pre-existing truth; conceptualising it in their own way; embedding it in a familial and hereditary history; recognising it through mirror effect and experiential knowledge; mobilising it in interactions (camouflage, social sorting, pedagogy); finally resorting to "diagnoses outside diagnosis" (hypersensitivity, giftedness) that function as diagnoses without medical recognition (p.18-23). For the field, the contribution is a framework for understanding: to grasp what the diagnosis allows — access to rights, recognition, sense — without confusing the demand for recognition and the demand for care (p.19, 23).
2️⃣ KEY POINTS OF THE DOCUMENT
1️⃣ Formal diagnosis vs informal — The article distinguishes clinically confirmed diagnosis from informal diagnosis : self-diagnosis of an existing category, or non-medical / alternative categories functioning as diagnoses. This distinction structures the entire analysis and legitimises the study of the ‘subclinical’ register (traits below thresholds). (p.18, 21)
2️⃣ The diagnosis as a ‘narrative prosthesis’ — Building on Mitchell & Snyder, the authors show that diagnosis serves as a resource for storytelling, explaining one’s personality and uniqueness: a ‘technique of the self’ aimed at telling the truth about oneself, more than just a simple identification. (p.23)
3️⃣ Two coexisting uses: utilitarian and existential — Diagnosis is mobilised to access rights, care, adaptations or financial aid (utilitarian use), but also to better understand oneself (meaning-oriented use). The two logics coexist, sometimes in tension. (p.19)
4️⃣ Wandering and diagnostic ambiguity — Several narratives describe long years of wandering, or an overabundance of labels that discredit the diagnosis; it often involves women and non-binary individuals living with ‘invisible’ conditions. (p.19)
5️⃣ ‘ Diagnostics outside diagnosis’ and online self-diagnosis — Hypersensitivity, giftedness / high potential circulate with diagnostic vocabulary (test, result) without formal medical recognition; online groups foster recognition through mirror effect. (p.21, 23)
3️⃣ ACTIONS FOR LOCAL ACTORS
⚠️ The article provides neither tools, nor protocols, nor check-lists. The points below are implications of posture derived from its findings, to be adapted locally — not measures drawn from the document.
1️⃣ Welcome an self-diagnosis without invalidating or endorsing it — Recognise the approach and the need it expresses, while clearly distinguishing what falls under a clinical opinion. The text shows that brutal invalidation is experienced as a denial of self. (p.19, 22)
2️⃣ Distinguish the request for recognition and the request for care — A diagnosis can first serve to be believed, supported, to access rights. Identifying what the person is really seeking (recognition, accommodation, meaning, care) avoids misunderstandings of direction. (p.19, 23)
3️⃣ Identify diagnostic wandering situations — Pay attention to long and unresolved journeys, more frequent among women and non-binary individuals with invisible conditions, to support rather than send back to wandering. (p.19)
4️⃣ Take experiential knowledge and peers seriously — Online groups and peer communities are sources of meaning and recognition. Integrate them as support resources, without ignoring the limits (misinformation — see external references). (p.21)
5️⃣ Reduce the need for camouflage — The masking is massive, especially at work, out of fear of prejudice; on the contrary, environments with a culture of accommodation (e.g. school inclusion measures) reduce it. Working on the welcoming climate is a concrete lever. (p.22)
6️⃣ Articulating listening and access to care — The diagnostic quest is inseparable from the difficulty of accessing care and the delays. Any local action benefits from linking listening, orientation and information on the actual care pathways. (p.23)
4️⃣ ADDITIONAL REFERENCES
External — verified resources post-2024
These three resources provide the critical and practical counterpart that the article, being more descriptive, does not address: risks of autodiagnosis, literacy and online misinformation.
• info.gouv.fr (3 June 2025) — "Mental health on social media: what are the risks of autodiagnosis?" — Clinical perspective (Dr L. Yon, psychiatrist) on the benefits and risks of the phenomenon, in relation to access to care.
• Psycom (2025) — "Misinformation on mental health: how to protect oneself?" — Resource for literacy and critical thinking regarding online content (2025 studies cited, including ADHD/autism).
• University of Montreal — UdeMnouvelles (2 July 2025) — "Mental health and TikTok: a study reveals the pitfalls of information" — Data quantifying misinformation (1000 videos analysed) and concrete solution pathways.
5️⃣ FREQUENTLY ASKED QUESTIONS (FAQ)
1️⃣ What do we mean by "formal" and "informal" diagnosis?
The formal diagnosis is established and clinically confirmed in the biomedical model. The informal refers either to self-diagnosis of an existing category or to non-medical categories (exploratory, alternative) that function as diagnoses. (p.18)
2️⃣ What is the study based on, and can its results be generalised?
Based on 25 semi-structured interviews (Quebec), analysed through discourse analysis (NVivo software). The sample is qualitative, young and highly educated: the results illuminate logics, they are not statistically generalisable. (p.17-18)
3️⃣ Why do people "seek" a diagnosis?
To access accommodations, care or financial aid (utilitarian use), but also to understand themselves and be recognised in their suffering, in a context of difficult access to care. (p.19, 23)
4️⃣ What is the "subclinical" register?
The presence of traits of a condition below diagnostic thresholds. The diagnosis then becomes a category of knowledge used outside of medical processes, without an official "seal." (p.21)
5️⃣ What role do social networks and peers play?
Online groups and peer communities offer recognition through a mirror effect: one recognises oneself in the narratives of others, which directs towards a category (often ADHD, autism, giftedness). (p.21)
6️⃣ How do people manage their diagnosis in interactions?
Through camouflage (especially at work), the “social sorting” (revealing to sort one’s surroundings) or popular pedagogy (sheets, memes) to explain their condition and indicate how to act. (p.22)
7️⃣ What are the “diagnostics outside diagnosis”?
Categories like hypersensitivity or giftedness, which circulate with diagnostic vocabulary (assessment, test, result) and serve as identity support, without formal medical recognition. (p.23)
6️⃣ REWRITING IN EASY TO READ AND UNDERSTAND (FALC)
What is this document about?
A diagnosis states what a person has. For example: autism, ADHD, migraine.
Before, only doctors gave a diagnosis.
Today, people give themselves a diagnosis. This is called autodiagnosis.
Often, they look for information on the Internet or social media.
Researchers spoke with 25 people. They listened to their stories.
These people are quite young. Many have pursued education.
Why are people seeking a diagnosis?
To get help: care, money, accommodations.
To better understand themselves.
To be believed and recognised when they suffer.
It’s also because it is difficult to see a doctor.
The important ideas
A diagnosis helps to tell one’s story. It helps to understand oneself.
Sometimes, people wait a long time before getting a diagnosis. This is called wandering.
Sometimes, one hides their diagnosis. Especially at work. One fears judgment.
Some people share their diagnosis to choose their friends.
Words like "hypersensitive" or "gifted" serve as diagnosis. But these are not medical diagnoses.
Online groups help people recognise each other.
What a professional can do
Listen to the person. Do not mock their self-diagnosis.
Understand what the person is seeking: help or care.
Help the person find the right healthcare professional.
7️⃣ CROSS-SECTIONAL ANALYSIS — VALUES OF HEALTH PRACTICES
Literacy : The article does not offer literacy tools; it sheds light on how people build their understanding from readings, peers, and online content. (p.21)
Empowerment : People are actors in their diagnosis (research, appropriation, own definition), but no formalised empowerment mechanism is described. (p.18-20)
Participation : Study based on the voices of the people concerned (analysis of 25 narratives); no co-construction of a mechanism is described. (p.18)
Community health: The collective dimension appears through peer communities and online groups, as an object of analysis and not as a promoted approach. (p.21)
Ethics : The sample biases (age, education) are identified and discussed; the protocol has received ethical approval (CER-DIS 2023-1736). (p.18, 24)
Human rights: The text links diagnosis to access to rights, care and accommodations, and gives voice to marginalised experiences. (p.19)
Intersectorality : The boundaries between medical, educational, social and digital are analysed, but no intersectoral partnership is recommended. (p.16)
Partnership : No collaboration model is formalised: the article is a research work, not an action guide.
Fight against discrimination: The text documents stigma, camouflage and invalidation; it values non-judgment and the diversity of experiences, without stating any anti-discrimination recommendations. (p.22)
8️⃣ ASSESSMENT OF RESOURCE RELIABILITY
Scientific relevance: high qualitatively. Peer-reviewed research article (Aporia, UOttawa), solid and explicit theoretical framework (Foucault, Rose, Rabinow), documented discourse analysis method, approved ethical protocol. Limitations acknowledged by the authors: non-probability sample (n=25), young and highly educated; absence of serious or highly stigmatised conditions (cancer, personality disorders, STIs). Declarative data from interviews, not epidemiological measures.
Operational relevance: indirect (template misalignment). The document is not a guide: neither tool, nor protocol, nor recommendation. Its value for the field is a framework for understanding and posture — useful for adjusting the welcome, not for structuring a turnkey action.
9️⃣ STRATEGIC HASHTAGS
#SelfDiagnosis #MentalHealth #Neurodiversity #HealthLiteracy #AccessToCare #ExperientialKnowledge #Stigmatisation #healthpractices
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