Jo Bentley has “had” just about every ailment going, from Parkinson’s disease to brain tumours. She even once thought she had leprosy until her doctor told her there’s no way she could have contracted it in Australia.
Bentley, from Nowra on the south coast of New South Wales, can laugh about it now but hitching her wagon to myriad random illnesses has been a bumpy ride that began in her teens and remains a problem 40 years later.
“I don’t know what triggered it,” she says. “Maybe it was my older brother’s hospitalisation as a kid for a staph infection after an operation or maybe it’s just my sort of personality.”
Bentley suffers from hypochondria – or as it’s now known, health anxiety – which is an obsessional and irrational worry about having a serious medical condition, characterised by imagined physical symptoms. It can also be a person’s misinterpretation of minor or normal body sensations as serious disease symptoms despite medical evidence to the contrary.
The condition has had a name change to remove the stigma and it has a modern offshoot known as cyberchondria, which involves obsessively checking and rechecking imagined illnesses online.
“Over the years I’ve thought I’ve had about 100 illnesses,” says Bentley. “Asthma, stroke, Parkinson’s disease – you name it and I’ve ‘had’ it. Anything I read about, hear about or see on television sticks in my mind to the point where I think I have all or most of the symptoms.”
The 57-year-old’s four children now tune out her complaints. Her husband calls her the boy who cried wolf. Unfortunately, despite improvements in treatment for health anxiety nothing seems to change Bentley’s cycle of worry. Even when doctors reassure her with blood tests and scans, she is still left feeling they have missed something.
Health anxiety affects nearly 6 per cent of Australians, according to a 2013 study, which was co-written by Associate Professor Jill Newby, a lecturer and researcher at University of New South Wales.
Newby, who is also a clinical psychologist, says the study was the first in Australia to establish health anxiety prevalence. Its aim was to better understand a condition that tends to be trivialised and to explore the impact it has on people’s lives.
“We found people were very debilitated by it,” she says, adding there is evidence showing its prevalence may be higher now due to the stress created by the Covid-19 pandemic.
“Health anxiety is often triggered at a time of stress, which can be a certain period or a stressful event,” Newby says. “The Covid-19 pandemic is a good example with its constant warnings in the media and its impact on work and relationships. My initial research has shown rates of anxiety are higher than what they were pre-pandemic.”
Newby says health anxiety can affect children as young as seven.
“We’ve noticed with kids with health anxieties, their parents may have engaged in behaviours they feel keep themselves and loved ones safe, such as compulsive cleaning with lots of cleaning agents, as well as behaviours like making family members get changed before they come into the house.”
Cognitive behavioural therapy (CBT), which involves learning skills to better manage anxiety with a shift in thinking and behaviour, has been found to be a successful treatment for health anxiety.
Newby was instrumental in developing an online version of this sort of therapy in Australia in 2018 that makes it more accessible and convenient for people across the country to access help. It provides educational modules as well as techniques to refocus anxiety in more positive ways.
In upcoming studies, Newby will look at the burden health anxiety places on the health budget.
“Anxiety as a whole annually costs Australia about $12 billion, which takes into account not just healthcare but also loss of productivity for people who can’t work or who need to take sick leave,” she says.
Jo Bentley admits her life is very much constructed around her health anxiety. She cannot drive long distances and now refuses to go to events held in enclosed spaces due to her most recent fear of head spins. This sometimes puts her at odds with family, especially around times of celebrations such as weddings and other special occasions.
“That started about two years ago when I had what I thought was vertigo and couldn’t get up off the floor,” she says.
While Bentley would like to travel within Australia, particularly to Victoria, she refuses to go anywhere that is not within easy reach of a hospital or medical centre. She usually sees her doctor every two to three weeks.
She has tried a range of treatments, including CBT, but nothing has worked.
“Doctors’ reassurances that ‘nothing is wrong with you’ is temporarily comforting but it’s never enough,” she says. “It’s like nothing is ever enough to give me a lasting sense of peace. I don’t know if it’s a fear of dying or just losing control. I just don’t know anymore.”
But there is success for some.
Danielle Taylor, 19, of Melbourne, was only 16 when she developed a blood circulation disorder known as postural orthostatic tachycardia syndrome (POTS), which triggered health anxiety that made her too fearful to leave home.
“The anxiety was very similar to POTS symptoms, which include nausea and headaches, so I just thought it was POTS making me feel sick when I left the house,” she says. Mistaking the symptoms, she “dealt with it by not going out”.
“I was pretty outgoing before this happened so it was fairly isolating because I had to do the last two years of school online. That also made it hard to maintain my school friendships.
“A lot of people thought it was all in my head, and it wasn’t until a family friend suggested I see a psychologist for anxiety who got me on to CBT.”
That was the turning point Taylor needed. As her confidence grew through learning skills to control her anxiety, and thus her nausea, she started her own business making planner stickers, and this year started university, where she studies exercise and sport science.
“I still sometimes feel a bit sick when I go out, but I can now tell the difference between my actual illness and the anxiety,” says Taylor. “Before the CBT, I would have rushed home. But now I give it time and usually the nausea subsides.”
A spokesperson for the Royal Australian College of General Practitioners, Dr Cathy Andronis, says health anxiety has been a very real challenge for doctors over the years.
“The nature of the illness,” she says, “means that the number of people presenting to surgeries with this condition is significantly higher than the national figure of between 5 and 10 per cent.
“Most doctors can usually spot it quite easily, but you need to give people the benefit of the doubt by ruling out the illness complained about and to get to the bottom of what is actually going on in their lives.
“Those with the condition tend to resist the suggestion their symptoms are caused by anxiety in other parts of their lives and can feel their symptoms are being dismissed despite proper investigation, which might include scans, X-rays or blood tests.
“It’s not about getting into an argument with patients, because that achieves nothing,” Andronis says. “It’s more about being an ally and helping them to see this as a slightly abnormal response to normal stimuli in their body.”
Another challenge for doctors is cyberchondria, which she likens to obsessive compulsive disorder where people keep going back to check and recheck to see if they have locked the door or turned off the iron.
“They get a short burst of relief but then doubts set in again and they go back and check again and again. The trouble with the internet is that they often end up focusing on the more rare or extreme conditions,” Andronis says.
“The internet can be a source of good information if used correctly but cyberchondria just ends up being a cycle of feeding more and more distress into the body.”
This article was first published in the print edition of The Saturday Paper on May 15, 2021 as "Anxiety bites".
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