Scrolling and worrying: the hidden dangers of DIY diagnosis | Carly Dober

Bfr* sat across from me, explaining how his low motivation, lethargy, and trouble sleeping looked like depression based on the content he had seen online. I recommended his GP do his blood tests, which told him Ben had low vitamin D and iron, which can mimic depressive symptoms. Under the care of his GP, Ben’s symptoms resolved quickly without requiring further psychological intervention.

Thuy* made an appointment with me, armed with information and old school and university records after her colleague was diagnosed with attention deficit hyperactivity disorder. After going through the evaluation process, I diagnosed him with inattentive ADHD, a condition often underdiagnosed in women and girls. Thuy was relieved and felt like her life finally had meaning to her, after years of assuming she was “just lazy.”

In my clinical work, a new ritual has become commonplace. Customers no longer just describe their symptoms, they often arrive with printouts, screenshots of dense articles, AI chatbot information, and the phrase “I did my research.”

Make no mistake, I fully support people trying to make sense of their mental health symptoms, and too often, when there are co-morbid physical and mental health issues, people are denied access to healthcare professionals without the care and support they need. Often, like Thuy, people can be right in their assumptions. Often too, like Ben, they can be wrong.

What can follow this self-directed research are half-understood statistics, cherry-picked case studies, viral social media threads, and anecdotes masquerading as legitimate data. I saw a spiral of anxiety due to a misreading of a side effect profile and depressive withdrawal justified by a misinterpreted and dangerously low quality study.

Customer-led research draws on the vast library of the Internet, but without the aid of guidance on how to interpret the information. We are seeing the rise of the amateur health expert, a well-intentioned but sometimes costly role. Taking an active interest in your health is positive, but the democratization of information, without the concomitant democratization of essential research skills, has created a perfect storm for misinformation.

We are drowning in data, but we lack vital practical knowledge. The consequence is individual confusion and a collective erosion of trust in the scientific process, fueled by cognitive biases running rampant in online echo chambers. Confirmation bias, for example, leads us to grab onto the one outlier study that confirms our fears. The Dunning-Kruger effect allows a few hours spent on YouTube to foster an illusion of expertise that dismisses experts with decades of clinical training.

For many, research has become synonymous with reading or searching online. For scientists, reading is just the first step in an exhausting process. Real research involves designing a question that can be tested, selecting an appropriate methodology, navigating ethical reviews, collecting and analyzing data, and subjecting each hypothesis to peer scrutiny. The barriers of academia, which include paywalls, jargon, and complex statistics, reflect this specialized and rigorous work. I think a public health campaign would be useful to increase data literacy.

To navigate the research landscape, people must first understand the hierarchy of evidence. Not all information is equal. At the top of the evidence hierarchy are systematic reviews and meta-analyses, which synthesize all available randomized controlled trials (RCTs) on a topic, providing the greatest certainty. RCTs are considered the gold standard for intervention studies, and they come next. Moving down the pyramid we find cohort studies, case series and, finally, anecdotal evidence; personal testimonials and “I know someone who…” stories which, while powerful, prove nothing about overall effectiveness or safety. A viral Instagram reel is an anecdote; a meta-analysis of 50 RCTs is proof of this. Confusing the two is a critical error.

How can you become a smarter consumer of health information, rather than being a victim? When you come across a claim or miracle cure that seems too good to be true, pause and interrogate the source with these questions.

1. What is the study design? Is this a controlled trial or a single case report? Locate it in the hierarchy of evidence.

2. Who was studied? Did the research include people like you in terms of age, gender, health status or ethnicity? A study on 20-year-old athletes might not apply to a 60-year-old man with a chronic illness.

3. Who is behind all this? Verify the funding source and author affiliations. Is it published in a reputable, peer-reviewed journal? Be warned: the peer review system itself is under attack from AI-generated “slop papers” – fake studies produced to pad academic CVs – making vigilance even more paramount.

4. What are the numbers? How many participants were involved? Are the results statistically significant and do the authors openly discuss the limitations of the study?

5. What is the consensus? Is this an isolated finding or does it align with a broader body of evidence? What do other independent experts in the field say?

This critical objective is your best defense. It allows you to distinguish between a solid clinical guideline and a compellingly presented story.

The most important tip is to look to the experts you are trying to emulate. Your research should be a prelude to a conversation, not a replacement. Being curious online and coming to a conclusion doesn’t necessarily test one’s beliefs. A qualified professional is trained in the process of questioning, evaluating conflicting evidence, and applying population-level data to your unique individual context. This is absolutely not to say that experts are never wrong and that science is infallible.

Science evolves because it is tested and retested and knowledge grows. Medical misogyny, racism, and classism still exist in spades, and they also need to be addressed immediately to restore public trust in institutions and experts.

In our collective quest for action on our health, we must not confuse information with understanding, nor confidence with competence. In the digital age, an important act of self-care may not be finding the answer yourself, but developing the wisdom to know who to turn to.

*All clients are fictitious amalgams