This syndrome is shockingly misdiagnosed. Little wonder Bethany felt ‘medically gaslit’

Bethany Wormald was so unwell that she was spending 23 hours a day lying down. Enduring massive heart palpitations, on her worst days, the furthest she could walk was to the next room. When she had to travel further, she would grip onto the wall.

But when Wormald, a former marathon runner, visited a Sydney medical specialist, hopeful he’d have answers to the severe symptoms she’d had since a COVID infection, she spent much of the appointment fielding questions about her psychological state rather than her physical condition.

Bethany Wormald developed severe symptoms following a bout of COVID.Credit: Dean Sewell

At the end, the doctor said her only drug options were antidepressants or anxiety medications. Wormald hadn’t been diagnosed with either condition.

“It’s the first time that I’d been medically gaslit,” she said.

“I thought, ‘Wow, how can you just not be believed or listened to?’ I found that astonishing.”

Wormald has a condition called postural orthostatic tachycardia syndrome (POTS), which affects the autonomic nervous system, which regulates heart rate, blood pressure and digestion.

For most Australian patients with POTS – and women in particular – experiences like Wormald’s appear shockingly familiar.

Women with POTS have, on average, faced an almost seven-year wait for a correct diagnosis, during which time close to 70 per cent are incorrectly told they have anxiety, and almost 40 per cent have their symptoms misattributed to depression, according to data from 457 Australian patients.

Dr Marie-Claire Seeley, researcher and chief executive of the Australian POTS Foundation, believes there’s one factor driving these statistics: gender bias in medicine, rooted in a long history.

Some of the symptoms of POTS are fatigue, dizziness (especially when standing up), fainting, brain fog, heart palpitations and headaches.

Seeley said that in the past, these types of symptoms meant women were often branded “hysterical”.

“That still exists in the mind and practice of a lot of doctors, and a lot of the time unconsciously … They don’t know the data, they don’t know that women are being denied care.”

One POTS patient, who endured a seven-year wait for a diagnosis, told researchers that her GP asked her to “stop attention seeking” after she had been discharged from a week-long stay in hospital with malnourishment caused by unrelenting nausea.

“It makes me incredibly angry how long I had to suffer before someone finally listened,” she said.

Men, despite being much less likely to develop POTS and overall reporting less severe symptoms, were able to get a correct diagnosis more than three years earlier than female patients on average, and were also less likely to have their physical symptoms misattributed.

The Australian POTS Foundation is calling for government funding to educate GPs to improve their understanding of the condition, which some research has suggested is a common cause of what is otherwise known as long COVID.

Seeley has also asked for medications that can be used by POTS patients, Midodrine (which treats low blood pressure) and Ivabradine (which is sometimes used to treat excessive heart rates), to be subsidised for POTS patients.

Associate Professor Ines Rio, a Melbourne GP who sits on the National Women’s Health Advisory Council, said educating GPs was likely only a small part of the solution to diagnostic delays.

She said the current Medicare system still incentivised “quick medicine” and this gave doctors insufficient time to manage complex women’s healthcare issues, while gender biases still existed in some clinical guidelines.

Dr Nicole Higgins, the president of the Royal Australian College of General Practitioners, said awareness of POTS had significantly improved among the medical community. The condition is part of current medical and GP training.

In 2019, Bethany Wormald set a world record for the fastest female marathon run dressed as a TV character.

But she also pointed to historical shortfalls in awareness and medical research into conditions that predominantly affect women.

Bethany Wormald said that when she visited the Sydney specialist, he had muttered under his breath that she had a “phobia of exertion”.

Yet before she fell sick in 2022, Wormald was an elite amateur runner who holds the Guinness World Record for the fastest female marathon run dressed as a television character.

Last year, Wormald flew to Adelaide to participate in a study and was prescribed medication, including Ivabradine and Midodrine, by a cardiologist at a POTS clinic. She has improved so much that she returned to work three days a week.

“From a situation where I could barely leave the house, I’m now out jogging,” she said.

“It’s a challenging condition – I’m still working on my cognitive fatigue – but my body is a lot better.”

The Albanese government has promised to address medical misogyny after a recent poll found two in three Australian women surveyed had experienced bias and discrimination in healthcare. The government has tasked the National Women’s Health Advisory Council with investigating the issue.

“Every woman has a story of gender bias or discrimination in the health system. For too long women’s health has been overlooked and dismissed,” Assistant Health Minister Ged Kearney said.

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