KZ Barton will never forget the night in her early 20s when searing abdominal pain landed her in hospital. Every signal from her body was telling her something was extremely wrong.
“When you experience pain that severe and you don’t understand it, you feel like you’re dying,” the Melbourne-based teacher and author says.
But despite her pain being “without a doubt” worse than unmedicated childbirth, Barton says, an emergency department doctor discounted her pain.
“He actually told me, ‘I don’t think you’re experiencing the pain that you’re presenting’.”
It was one of many healthcare settings in which the now 36-year-old has felt “devalued, dismissed”, or treated as “a hysterical woman” since developing chronic pain, dizziness, gastrointestinal issues and other debilitating symptoms as a teen.
She was finally diagnosed with endometriosis in her mid-20s. Diagnoses of adenomyosis, postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos syndrome followed several years later.
Barton’s story is not unusual. Two-thirds of Australian women have experienced gender bias or discrimination when seeking healthcare, a 2024 federal government survey found. That survey revealed that feeling shrugged off or stereotyped as a “drama queen” is common – and often leads to delays in diagnosis and treatment.
In a healthcare system made by men, for men, actively advocating for yourself as a patient isn’t a cure-all – but it helps. Here, women with experience share their advice on navigating medical systems.
Don’t be afraid to seek another opinion
Barton has a clear message for all patients: if a doctor dismisses your concerns, ask elsewhere.
“Unfortunately in our current society, you cannot assume that going in and saying, ‘something’s wrong, I need help’ will be enough,” she says. “Do not ever be afraid to see different doctors or specialists. Get a second, or a third, or a fourth opinion.”
Dr Pav Nanayakkara, a gynaecologist at Jean Hailes for Women’s Health in Melbourne, is used to being the second opinion that finally makes a difference, and echoes Barton’s advice.
“It is one of the most common stories I hear; women come in and tell me they’ve been living with pain for years, and have been told previously it’s just period pain … which is incredibly frustrating and disheartening,” says Nanayakkara.
“Some of them have been told it’s things like anxiety, before they’ve even come to considering things like endometriosis.”
If you feel dismissed, or “something doesn’t feel right in terms of management, absolutely, get a second opinion”, Nanayakkara says. If it’s a specialist you’re after, a good primary care doctor can often recommend someone.
“If you can find a GP that takes you seriously, they are able to open the door to many other specialists and also find you pathways through the public system,” says Barton.
Barton also suggests using peer support groups and your own social circle to find supportive healthcare providers. “Reach out to your friends and say, ‘hey, I’m dealing with these problems. Have you seen anyone who might be helpful, or do you have a helpful GP?’”
Public or private, you have rights
Patients with private health insurance have more freedom to choose which specialist they see, compared to patients in the public healthcare system.
But Dr Jane Hutchens, a researcher at the University of Sydney’s Insight Research Institute, wants public patients to know they still have rights and options.
“You can request a change of team – so if you don’t like your respiratory team, you can request a change. And that is absolutely valid and it happens,” says Hutchens, who has researched patient self-advocacy.
“You can request to speak to the team leader, the manager, if you have particular concerns. And you can request to speak with the patient advocate, which every hospital has.”
Whether you’re a public or private patient, you’re protected by the Australian Charter of Healthcare Rights, which sets out seven fundamental rights for all patients: access; safety; respect; partnership; privacy; information; and the right to give feedback.
While not legally binding, this list can empower you to speak up if something feels wrong. So it’s worth brushing up on those rights and knowing that you’re entitled to make a complaint without it affecting the way you’re treated.
Research your condition
As long as you stick to evidence-based sources, research can help you better understand your condition and spot gaps in your care plan.
Hutchens suggests looking at the websites of health promotion charities, such as the downloadable fact sheets on the Cancer Council website. Many of these organisations publish helpful resources such as “questions to ask your doctor” or symptom lists.
Some offer peer support groups that can be a great source of information. “You’ll meet other people with similar conditions and they will be able to say what their experiences have been like,” Hutchens says. “They can be really safe – particularly if they’re moderated, because it can kind of filter out dodgy information.”
Unmoderated online communities such as Facebook groups can also be helpful resources – but health misinformation is rife online, so approach with caution.
Hutchens says it is important to assess the reliability and accuracy of information shared online, and suggests using the CRABS framework. That model, by healthcare educator Jessica Stokes-Parish of Bond University, helps identify online misinformation by considering a source’s conflict of interest, references, author, buzzwords, and scope of practice (CRABS).
Communicate clearly by planning ahead and taking notes
Effective self-advocacy requires clear communication – and this starts well before an appointment.
“If you can be really clear before you go into the consultation about what your goals are and what your needs and priorities are, it’s going to make it much easier to communicate that,” says Hutchens.
You also might have to go into the appointment ready to rephrase your concerns.
“[Be] prepared to not get the response you want. Sometimes it might take a couple of times of asking, or asking in different ways,” says Hutchens.
Clear communication with doctors also means really understanding what your care provider is saying, “and that can be really hard, particularly if it’s not said clearly,” says Hutchens. So if don’t understand something your doctor has said, don’t be afraid to ask for clarification. You can ask them to rephrase it, or repeat what they’ve said in your own words, to see if you’ve interpreted it correctly.
To that end, take notes in appointments. Whether you jot these down yourself or bring a friend or support person to do it for you, Hutchens says note-taking is crucial for remembering what was said in a consultation.
Coordinate your specialists
Patients with complex conditions sometimes feel their doctors aren’t connecting the dots between symptoms. This can happen because our healthcare system is “super compartmentalised”, says Nanayakkara.
“You might see a gastroenterologist for your gut stuff, gyne for your reproductive stuff, a rheumatologist for joint pain – and if no one’s looking at the bigger picture, things can very easily get missed,” she says.
This fragmentation can also cause misdiagnosis when specialists ignore impacts outside their field. “To a carpenter, everything looks like a nail,” says Hutchens. “It’s not that they don’t care. It’s just not their scope or their field of vision.”
During her research into patient self-advocacy, Hutchens interviewed women who had cardiac issues in pregnancy and postpartum.
“They were in an obstetrics ward with a cardiac condition and no one knew what the heck to do with them, or they were in a cardiac ward with a baby and trying to breastfeed two days postpartum and no one knew what to do with them,” she says.
“So we need to be better around that conversation between specialties and building those relationships in a meaningful way.”
Keeping copies of all your medical records can really help with this.
“Bring them to every appointment. And even after specialist reviews, requesting a copy of the letter can sometimes be a really good idea, to make sure that each specialist knows what the others are doing,” says Nanayakkara.
Send copies to your other doctors, or bring them to your next consultation: “Don’t necessarily assume that they’re talking to each other.”
Keep an eye on your mental health
While chronic illness can significantly impact anyone’s mental health, women face additional healthcare challenges that can worsen the psychological toll.
Australian research published in June found that patients with so called “women’s conditions” – like endometriosis, polycystic ovarian syndrome or birth trauma – have far higher rates of psychological distress, compared to those with physical health conditions that affect both sexes.
Women also encounter more symptom invalidation – colloquially known as medical gaslighting – than men. Over time, the impact can be significant, says psychologist Seona Ilalio, who works specifically with chronically ill women at Livology clinic in Melbourne.
Being repeatedly dismissed or not believed is “profoundly destabilising”, says Ilalio, who also co-hosts the But You Look So Good podcast on living with chronic health conditions.
“We’re not just talking about frustration. Medical gaslighting can lead to trauma, just like other forms of trauma.”
Research published in April 2025 by Rutgers University found that this can cause trauma, suicidality, self-doubt, shame, a loss of trust in the medical system, and delayed diagnosis.
“When enough people tell you maybe what you’re experiencing is not real, it has a profound effect on your own sense of self, your own confidence,” says Barton. “You begin to doubt your own perceptions.”
The good news is, medical trauma is treatable, Ilalio says. “With the right support that you can be validated … and can reclaim some of that self-trust again,” she says.
Peer support groups can help, she says, and for professional assistance, seek out a psychologist with specific expertise in medical trauma.
The journey to diagnosis and treatment can be long and arduous, as Barton knows all too well. She urges patients to listen to their bodies, trust their instincts and keep pushing for answers. “If you are not feeling OK, then you are worthy and deserving of help,” she says. “And even if it’s hard, you need to keep going until you are listened to, until you receive that help.”
Grace Jennings-Edquist is executive producer of Beyond Hysterical podcast (@beyondhysterical), available on Apple and Spotify.
