Martin Ingle says he was “more or less a healthy young man” before he turned 23 and started noticing changes.
“Over the course of a few weeks, I was a firsthand witness to my brain changing,” he told The Drum.
As he scoured the internet for answers, he stumbled across a type of obsessive-compulsive disorder (OCD) that he had never heard of but seemed to encompass everything he was experiencing.
Should I google my symptoms?
We’ve all been told not to use ‘Dr Google’ but many Australians still do.
Preeya Alexander is a GP in Melbourne who has had many patients in her consulting room talk about googling their symptoms.
“Googling symptoms and management options can help some patients navigate their way through the healthcare system,” Dr Alexander says.
“I had a patient google their foot pain recently and consider plantar fasciitis as the diagnosis.
“Their online search led to them seeing a physiotherapist, which was completely appropriate.”
There’s a flip side though.
“Patients can go down all sorts of rabbit holes, and I’ve seen googling generate significant anxiety,” Dr Alexander says.
She’s seen patients who have googled symptoms like coughing and fatigue and received search results diagnosing serious illnesses like cancer.
When the patients show up for their appointment after many sleepless nights, Dr Alexander spends most of the time “reassuring them that the cough is post-viral in nature … not the cancer they’ve been panicking about”.
Social media a double-edged sword
Social media platforms are increasingly being used to find answers to mental health concerns.
ADHD is one of the most popular health topics on TikTok. But a study published in the Canadian Journal of Psychiatry found about half of the ADHD TikTok videos the the researchers investigated were misleading.
Nevertheless, the information found on social media can be life changing for people with mental health issues.
Martin Ingle received a correct diagnosis from his third therapist after months of online research.
“The two therapists I saw before that, neither of them had any clue,” he says.
“It wasn’t until months later – after I’d done my own research and actively sought out somebody who specialised in what I suspected I had – that I was able to get a correct diagnosis.”
He says finding that information online was invaluable.
Ian Hickie, a mental health specialist and co-director at the University of Sydney’s Brain and Mind Centre, told The Drum Mr Ingle’s experience was very common – particularly among people living with obsessive-compulsive disorder.
“Obsessive-compulsive disorder is actually one of the conditions that was said to be very rare until people went out and did community surveys and found it was quite common,” Dr Hickie says.
“They didn’t want to talk about it or share those experiences. They were embarrassed and the idea of revealing what was going on was very difficult.”
The National Study of Mental Health and Wellbeing shows over 50 per cent of Australians have a mental health problem and do not receive any care at all.
But Dr Hickie says when people do things to help them cope – including watching TikTok videos – it can help them recognise their issues and encourage them to seek support.
“What actually happens then is people don’t avoid care, which is what doctors and others worry about,” Dr Hickie says.
What are the risks of self-diagnosing?
Misdiagnosis or overdiagnosis are some of the risks that come with using the internet to self-diagnose.
“It can be tricky in the consulting room to combat what a patient has seen on social media,” Dr Alexander says.
For example, when a celebrity shares their positive experience of a colonoscopy and suggests everyone should have one, “it’s without consideration that not everyone requires this investigation”, Dr Alexander says.
“For many, the risks of the procedure outweigh the potential benefits.”
Getting a diagnosis wrong is also a very real possibility.
“A health professional can get it wrong too but we have the knowledge and training to exclude red flags – that is serious conditions – and we try and have safety net patients to ensure nothing is missed,” Dr Alexander says.
“I might, for instance, examine your sore abdomen, exclude appendicitis and other emergency causes, and suggest we review in 48 hours to ensure your symptoms are improving if it’s the gastritis I suspect.”
Despite his own positive experience, Mr Ingle recognises the risks too.
“The concern here is that people will diagnose themselves incorrectly,” he says.
“What I think is missing from that picture is the fact that even when you go through traditional pathways of diagnosis, you so often are misdiagnosed anyway.”
And there’s also the risk that people are overdiagnosing themselves.
“Maybe there isn’t anything wrong, so they’re turning to these platforms to get a diagnosis almost as an ego boost,” Mr Ingle says.
Nevertheless, he also sees the benefits of finding information online.
“It’s only through online communities that you can find people who are experiencing exactly what you’re experiencing.”
How to use ‘Dr Google’ well
Dr Google can be used in meaningful ways, especially for mental health issues.
When people share their experience of mental illness online, “they’re actually demonstrating what might actually be the impact on their lives, describing it, not filling out a checklist”, Dr Hickie says.
“They’re much more animated and engaged, and people can get a better idea from that.”
Dr Alexander agrees.
“I think it can be wonderful for breaking down stigma, particularly in the mental health space,” she says.
“With people sharing their stories, lived experiences, and talking openly, I’ve found that more patients are willing to come forward, share their own stories and seek help for symptoms they’ve struggled with silently.”
But it’s important to stay alert and know that social media has great potential for good and harm.
Dr Alexander points to the COVID-19 vaccine rollout in Australia as an example.
“It was very positive when influencers supported public health initiatives and promoted them on their platforms,” she says.
“However, we also saw how destructive it could be with the spread of misinformation in many instances around vaccination and face masks and the undermining of public health initiatives.”
Mr Ingle says the internet provides a wealth of information for people who are silently suffering from OCD and other illnesses.
“We are trying to understand these very real human conditions that have always existed,” he says.
“It’s not that these diagnoses are becoming more frequent – it’s that we’re becoming better at recognising and knowing what they are.”
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I had to turn to Google 12 years ago when I started suffering extreme GI symptoms. My GP at the time wouldn’t take any notice when I went to see them, so I googled. I’m glad I did as then my partner and I went to the GP to demand a referral to a specialist. After having tests conducted and losing 20kg in 2 months I had to have surgery. Sometimes doctors also become a lax when you have been going to them for a long time. You need to be aware of your own body and if you don’t think your doctor is taking you seriously question them and if no improvement go get a second opinion.