When it comes to our health, we’ve never had more resources at our fingertips. Whereas once we relied on leaflets or a book at the library, we can now access immediate information online about every symptom, sign or itch we experience.
But when does having a little bit of knowledge turn into an obsession? Cyberchondria is that moment when a person starts to spend countless hours on the internet trying to self-diagnose symptoms and then becomes anxious they may have the worst-case scenario.
The term cyberchondria was first coined in the early 2000s and while it’s not yet considered a syndrome or a condition, it shows signs of becoming more prevalent.
“It’s not an official syndrome because in psychology we’re bound by the DSM — which is the Diagnostic and Statistical Manual of the American Psychiatric Association,” says Mary Aiken, cyberpsychologist and research fellow at the Royal College of Surgeons Ireland (RCSI) Institute of Leadership.
“Cyberchondria isn’t an official syndrome but that isn’t to say that it won’t go on to be considered a syndrome. There’s actually a new DSM due to be published next year and this area is being considered by the working group compiling it.
“One of the traits they’re looking at is online symptom checking — which is a key aspect of cyberchondria — so it’s certainly an acknowledgement that these behaviours are going on.”
Most of us are familiar with hypochondria — a recognised condition — where people excessively worry about perceived health symptoms and can’t be easily reassured by medical professionals. But is cyberchondria just hypochondria gone online or does it have different characteristics?
“Hypochondria is a serious clinical disorder and it’s got a prevalence of about 4pc in the general population,” says Mary. “In terms of cyberchondria, it’s a more general condition. There are limited studies in terms of the prevalence of cyberchondria, but I’ve seen figures of anything from 20 to 30pc in the population.
A 2011 Quinn Healthcare survey found the condition was more common among women.
“Cyberchondria is an escalation from looking at a base symptom to a very serious condition — just by looking up information online. People’s anxiety levels increase as they get stressed and worried by thoughts they have this condition.
“There was a study that analysed 40 million web crawls. They looked at people entering primary symptoms into search engines — things like breathlessness, dizziness, fatigue, fever, headache, insomnia — for which there are often simple explanations. Then they looked for escalation in the searches to serious conditions like a tumour.
“So if you take a specific example — someone is searching online about a sore throat — that could very easily be an indication of a very ordinary throat infection. But the study traced how people then went on to search something like oesophageal cancer.”
How do these symptom searches develop into worst-case scenarios?
“Humans have a predisposition to escalate to the worst-case scenario in terms of having a natural anxiety about their health,” says Ms Aiken.
An article in the April 2012 issue of ‘Psychological Science’ suggested that the irrational tendency at work in the brains of cyberchondriacs is the same as that in the brains of gamblers.
When gamblers get a positive roll of the dice, they think that their luck will continue. When cyberchondriacs match a few of the symptoms for a condition, they take that as a positive sign and may assume they must have the other symptoms on the list.
But it’s not all down to the cyberchondriac — there is a design issue in search engines.
“The way that the search results are configured will almost do the escalation for you,” says Mary. “If you put effectively any body part into a search, what you’re going to get is pages of morbid conditions because if other people have a tendency to escalate during the search, then the ranking algorithms that underlie searches will capture that and serve it back.
“So it’s a cycle that goes on and on. You have to be very careful in terms of searching online because what you’re seeing is what everyone else previously searched for online.”
Cyberchondria can have dangerous consequences.
“We want people to be engaged and interested in their own healthcare but what’s not advisable is to engage in practices that may actually have a negative impact. You might have some sort of symptom that in its own right is reasonably harmless and will pass in time but because of cyberchondria, you end up with increased levels of anxiety because you’ve searched all sorts of things that are unlikely to occur.
“Medical professionals that I’ve spoken to would be quite horrified at the thought that someone
might diagnose themselves online and not consult with a medical expert.
“An Australian medical professional came out recently and said that they were now coming across what he called catastrophic examples of people who had not only diagnosed themselves online, but had actually ordered medication on the basis of their own diagnosis.
“They’d gotten this medication from illegal sites and then gone into online chat rooms to try and get information about recommended doses. They actually took excessive doses of the wrong medication for a condition that they did not have.”
Kathy Maher is a community pharmacist in Co Meath and is the Vice President of the Irish Pharmacy Union.
“Cyberchondria does seem to be increasing and there are two main cons against diagnosing yourself on the internet,” she says.
“Someone may worry themselves unnecessarily because they’ve self-diagnosed incorrectly. Equally, someone could end up reassuring themselves that there isn’t a problem when they should actually get it checked out with a medical professional.
“Information is so accessible — everything is available in an instant, especially on smartphones. People assume, ‘Oh, I can treat myself,’ and they also look into buying medicine online which can lead to problems. We saw that recently with the girl who took diet pills she’d bought online and had to have her colon removed as a result.
“A face-to-face consultation — even if it’s just a rash, a bump or a lump — is always better than checking a million websites.”
Mary Aiken says that hypochondria and cyberchondria can both be challenging for a medical practitioner, particularly one who has a very busy practice.
“We’re seeing the emergence of the Google stack in the waiting room — where people are coming in with pages and pages of information about perceived conditions that they’ve diagnosed for themselves, or for dependents, say their children. And then the doctor has to invest time talking them down from this perceived condition and reassuring them,” Ms Aiken says.
‘The good news is that most people are reassured. There is this negative aspect that of course doctors, like all professionals, sometimes miss something or sometimes don’t get it completely right but that is the exception as opposed to the rule. There’s a very good reason why medical practitioners go through such extensive and long training — to be able to practice medicine and to diagnose. So, people should really take advantage of that expertise.”
She also cautions people against over-relying on information from chat forums.
“Online forums can offer support and you can get reassurance in terms of how you are feeling. But if you are looking at diagnosis, medication and therapy, the only person you should be consulting with is someone who is qualified to give the advice.
“It may sound like common sense, but people forget sometimes that they’re talking to complete strangers online and they really have to be careful about the information.”
Ms Aiken advises that if a person thinks they may have cyberchondria that they seek advice from their GP.
“If you’re constantly checking symptoms and becoming anxious as a result of it, talk to your GP and say, ‘I’m doing this, what do you think?’ The GP may recommend some credible websites or may say, ‘Stop, this is not constructive activity. If you’re feeling unwell, come and talk to me’.”
Kate Kelly, chief librarian at the Royal College of Surgeons Ireland, says that the internet has a lot of positives when it comes to health information.
“We hear about the downsides of self-diagnosing and buying medications illegally but there have been studies that show people can get a lot of useful information online and support from self-help groups.
“There are a huge number of positives in terms of empowering and enabling people to take command and control of their own health issues. As an educational tool, the internet’s potential is pretty powerful.”
Kate’s talk at the Royal College of Surgeons (see details left) will give advice on how to get information on websites and make sure that it’s from reliable sources.
“You need to think about who is putting this information out, are they authoritative and is the information up to date? Why is the website being provided — is it educational or selling a product? What does the site want from you? Is it being reviewed by experts and is there contact information on it? Just because a website is popular doesn’t make it a good site.”
Kate says there are many layers of health information, including large directory sites, more specific sites and biomedical/journal sites.
“The large directory sites are something like Irishhealth.com. They’re content rich, you’re able to look up conditions alphabetically and you have a lot of resources. As you need more information, you can go deeper into other resources,” she says.
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