Blessing or curse? Self-diagnosis via social media

Your diagnosis is just a swipe away: Anyone looking for mental health advice will quickly find it online. However, the kind of information you're likely to read is often not what you need, say experts. Karl-Josef Hildenbrand/dpa

If you have an undetermined health problem, you see a doctor, who makes a diagnosis. At least that's how it used to be. Nowadays, in the age of social media, self-diagnosis - most notably of mental illnesses - has become common.

On platforms such as TikTok and Instagram, people report how they self-diagnosed, say, attention-deficit/hyperactivity disorder (ADHD) or autism, which, to be clear, isn't a mental illness. Many describe their symptoms and tell their tale of suffering. Some encourage others to do the same.

Mental health issues have been discussed on social media for quite a while. Sufferers, among them influencers and celebrities with large audiences, upload videos in which they talk about their disorder. And psychologists and psychotherapists post content on their speciality.

Be it ADHD, autism, depression or something else, pertinent results pages will quickly pop up if you search for them online. A desultory swipe of your touchscreen can turn them up as well.

In the view of Berlin-based psychotherapist Umut Özdemir, who's also an author, lecturer and active on social media himself, it's a good thing that social media are helping to destigmatize mental illnesses among young people.

Sometimes they don't realize they may have a mental illness until they see something on social media.

"You've first got to become aware that you don't feel like most other people do, that what you thought was normal isn't normal at all," Özdemir says, noting that if you didn't suspect anything, you wouldn't make an appointment with a psychotherapist.

Take ADHD, for instance. According to Özdemir, statistics show that the number of ADHD diagnoses is rising. This isn't because the disorder has become more prevalent, he says, but because the symptoms have become more widely known: "People now have an opportunity to inform themselves" - via social media too.

A growing number of people come to his therapeutic practice suspecting they have a mental health condition. "This shows me they're asking the right questions and not dismissing the matter," says Özdemir, but emphasizes that a definitive diagnosis must be made by a specialist, and self-diagnoses are error-prone.

"For one thing, they're subjective. In addition, they typically lack professional expertise as regards a differential diagnosis," he says, referring to an enumeration of possible conditions that share the same symptoms.

So he's critical of people expecting special treatment from others on the basis of a supposition not backed by a professional medical assessment. "At worst, it could lead to the person resting on their supposition," he remarks.

Dr Burkhard Rodeck, secretary general of the German Society of Paediatrics and Adolescent Medicine (DGKJ), also warns of the dangers of informing yourself about illnesses via social media.

While social media shouldn't be condemned wholesale as an information source, he argues, "there's often an absence of thorough research, and little distinction is made between fact and opinion."

Adolescents, in particular, don't have the experience to recognize the distinction, he says, adding that reliable information - for non-specialists too - is available from medical associations and in guidelines on illnesses.

Özdemir advises critically examining information sources as well. "Lots of people have simply jumped on the mental health bandwagon," he says. "Sometimes I have the impression that we live in a country where everyone's an expert on the psyche."

Rodeck points to another problem: "We all inform ourselves with a bias," he says, meaning we read what we want to read. "Our perception is always subjective," which is why he says the involvement of someone who's as neutral and expert as possible is important when it comes to a diagnosis.

"But before consulting a doctor or therapist, it's OK to gather information yourself, of course," he adds.

As demand for psychotherapy grows, however, securing therapy sessions can be challenging. Özdemir says that although it's relatively easy to get an appointment for an initial consultation - during which a tentative diagnosis can be made - the therapy itself usually requires a long wait.

If a child or adolescent is suffering badly from a presumed mental health condition, Rodeck advises the parents to speak with a paediatrician. This, he says, can often shorten the waiting period for a therapy spot.

But both he and Özdemir bemoan the dearth of treatment spots, a criticism often made on social media and a potential impetus for self-diagnosis.

Another inducement to give credence to accounts on social media from supposed fellow sufferers is that research and diagnostics frequently focus on particular cohorts. A typical example is ADHD, long thought to be almost exclusively a boys' problem. Now we know that girls with ADHD can display behaviours different from boys'.

"I find it understandable that minorities take each other more seriously when they compare notes," says Özdemir, but "fortunately a lot is happening in research and this weak spot is known."

Ultimately of importance after a self-diagnosis, he points out, is what happens next. "If you'd like or need therapy, you won't get around a diagnosis by a professional."