In 2016, 20-year-old Lucy Dawson was sectioned for an apparent mental breakdown. Even though she had all the classic symptoms of encephalitis, she was misdiagnosed and left in a psychiatric ward until it was almost too late.

But medical negligence in women’s health is nothing new. Read Lucy’s story and the history behind it.

For centuries, doctors diagnosed women with “hysteria” – a condition characterised by emotional excess. In Western medicine hysteria was considered both a common and chronic disorder among women. Some of its symptoms included sexual desire, irritability, depression, and anxiety. In extreme cases, women diagnosed with “hysteria” were forced into insane asylum’s or underwent horrific and irreversible surgical procedures such as lobotomy or hysterectomy without consent.

The notion that women are somehow pre-disposed to negative behavioural conditions goes back to Ancient Greece, when the womb was thought to wander around the body and cause trouble wherever it went. This theory was rejected with the advancement of modern medicine, but the connotations persisted in Western popular thought for centuries. Today, researchers of medical history point to evidence that hysteria was simply a way to pathologize “everything that men found mysterious or unmanageable in women”.

They were mutilated or molested – clitorises cut off when sexual pleasure was deemed to be the cause, or ‘medically stimulated’ into orgasm when sexual pleasure was deemed to be the cure.

Supposed ‘cures’ usually involved punishment intended to turn a difficult woman into a docile one. They were mutilated or molested – clitorises cut off when sexual pleasure was deemed to be the cause, or ‘medically stimulated’ into orgasm when sexual pleasure was deemed to be the cure. Hysterectomies and oophorectomies were unnecessarily performed – often without the patient’s consent – with the intent to sterilise reproductivity and neutralise hormonal fluctuations. Not to mention the dreaded ‘resting cure’ which inspired a short story so psychologically tormented that it convinced the pioneer physician to abandon it as a form of treatment altogether.

While hysteria is no longer recognised as a medical disorder, women are far more likely than men to be told their symptoms are psychosomatic or the result of a mental illness. The implications of this can be devastating.

Lucy’s Story

In 2016, 20-year-old Lucy Dawson was sectioned under the Mental Health Act 1983 for an apparent mental breakdown. Even though she presented with all the classic symptoms of encephalitis, including confusion, personality change, hallucinations, and headaches, she was misdiagnosed and left in a psychiatric ward for three-and-a-half months.

During her time there, Lucy was given electroconvulsive therapy in a last-ditch effort to reset her brain, causing a seizure which made her fall out of bed onto an exposed radiator pipe.

Lucy recalls, “It was the end of November, so the pipe was as hot as it was ever going to be, and I lay on it half dead and having just had ECT, until an old lady screamed for help.”

Anti-psychotic medication had turned her from manic to catatonic, so she was unable to move or call for help on her own. When nurses finally discovered her, it was too late. She suffered third degree burns and was inexplicably paralysed in her left leg. Staff members falsely attributed this injury to one of many violent ‘breakdowns’ when friends and family started to ask questions.

Disabled Model — Lucy Dawson Photographed in 2021 at Cleethorpes Beach

In January 2017, Lucy was finally seen by a neurologist and tested for brain injuries. It was only then that she was diagnosed with anti-NMDA receptor encephalitis, a type of autoimmune disease where the body attacks otherwise healthy receptors in the brain. Lucy explains, “They call it friendly fire because your immune system identifies antibodies and healthy cells in the brain as being bad and attacks them.” This time, doctors explained that her paralysis was just another symptom of her disease.

Anti-psychotic medication had turned her from manic to catatonic; when nurses discovered her it was too late.

But Lucy was still not satisfied. She decided to hire a lawyer after being discharged from hospital and saw several specialists for her leg – none of whom could offer a real explanation. One day, a locum noticed the position of the scar the burn had left and checked it against a diagram for the sciatic nerve. It suddenly became very clear: the radiator had burned right through it. The damage was irreversible.

Since then, the hospital has apologised and launched a “robust internal investigation” to improve their standard of care for future patients. But Lucy insists nothing could ever make up for the physical and emotional trauma she endured at their hands.

Lucy is now a British ambassador for disabled modelling and works to increase representation in the industry. She says that her success as a lingerie model “came out of nowhere. Because I’ve got quite a curvy figure, brands were interested and that became my niche.” She goes on to say that helping other disabled women to reclaim their sexuality “makes me feel what I do is worthwhile.”

In the five years that have passed, Lucy has encountered countless women with stories just like hers from all over the world. Australia is no exception.

Click here to follow Lucy on Instagram

A Bigger Issue

One in three women has had their health concerns dismissed by their general practitioner according to the latest figures from the Australia Talks National Survey 2021. It found that women were twice as likely to feel dismissed as men.

For instance, endometriosis affects one in nine women in Australia, but it usually takes six-and-a-half years to get a diagnosis.

“We literally know less about every aspect of female biology compared to male biology” – Dr. Janine Austin Clayton, director of the US Office of Research on Women’s health.

Research shows that health care providers prescribe less pain medication to women than men after surgery. In general, women report more severe levels of pain, more frequent incidences of pain, and pain of longer duration than men, but are nonetheless treated for pain less aggressively.

“It’s a huge issue in medicine,” says Dr. Tia Powell, a bioethicist and a professor of epidemiology and psychiatry at the Albert Einstein College of Medicine in New York. Medical professionals may hold implicit biases that affect the way that women are treated, she said. “Medical schools and professional guidelines are starting to address this problem, but there is still much to be done.”

Karen Magraith, a GP and president-elect of the Australasian Menopause Society, said the gender gap extended beyond reproductive health issues.

“We have evidence heart disease in women is not recognised as early, not treated as effectively and women receive less evidence-based treatments than men do. I think that’s a good example of where women’s health is not as effectively treated as men’s health,” she said.

One of the main reasons for this is that women have been historically underrepresented in clinical trials for new drugs, treatments, and devices in Australia and across the world. And in the few instances where women have been included, the influence of sex and gender is often ignored. As a result, women are more likely to be withheld effective treatment and exposed to harmful side effects – including a higher incidence of adverse reactions when new (and insufficiently researched) drugs hit the market.

The result? “We literally know less about every aspect of female biology compared to male biology,” says Dr. Janine Austin Clayton, director of the US Office of Research on Women’s health.

It would seem that women are just too hard to study. For decades, women were excluded from clinical drug trials based on the unsubstantiated belief that fluctuations in hormones associated with the menstrual cycle would make results more difficult to analyse. When thalidomide was found to cause serious birth defects in the 1970s, women of childbearing age in the US were banned from participating in clinical research studies in order to ‘protect’ their reproductive capabilities. Even though this ban was lifted in 1993, and the inclusion of women was mandated in government-funded research, drug companies were not required to comply.

A 2008 report found that Australian Human Rights and Ethics Committees (HRECs) failed to enquire about the numbers of male and female participants in clinical trials. The same report showed that opinions were also divided on whether research cost and convenience justified excluding women from research.

As it currently stands, the Australian National Health and Medical Research Council (NHMRC) has no policy comparable to those in the US or Canada requiring researchers to test on both men and women.

But organisations like the George Institute are calling for policy reform in order to standardise the way sex and gender is collected in clinical trials in Australia. Their demands include gender specific reporting in academic journals and a more equitable balance of female and male patients in clinical trials.

In response to such demands, a spokesperson for the Department of Health pointed to the $535 million package set aside for female health as part of the 2021-2022 national budget. It serves to improve cervical and breast cancer screening programmes, provide Medicare subsidies for testing of IVF embryos for genetic faults, increase support for the mental wellbeing of new and expectant parents, and boost women’s health initiatives including the Periods, Pain and Endometriosis Program (PEPP-Talk) developed by the Pelvic Pain Foundation of Australia.

However, this package amounts to less than $46 for every woman over the age of 15. More can be done to help.

What You Can Do

Standard consultations at the GP last just 15 minutes. Here’s how to make sure your health concerns are heard.

Come Prepared

Plan what you intend to talk about before you arrive for your appointment. Write down any concerns and questions so you don’t forget. Be specific.

Tell Your Story

According to Leana Wen, MD, author of When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests, “doctors end up asking about symptoms rather than the story. But studies have shown that over 80% of diagnoses can be made just by listening… By that, they mean listening to the story, the open-ended story of what happened, rather than asking a list of yes-no questions”

Be sure to mention:

When the symptoms started
Whether any life event/action coincided with the onset of symptoms
Whether the symptoms have appeared before
Describe how it feels
Whether the pain has increased/decreased
How often you feel the pain

Take Someone with You

If you are dealing with a particularly complex issue, have a condition that makes it difficult to discuss alone, or are particularly vulnerable, it might be appropriate to bring a patient advocate or a loved one along to an appointment.

Request a Female Doctor

Studies show that female doctors tend to listen more and their patients — both male and female — tend to do better.

Be Direct

If you still feel like you’re being dismissed, tell your doctor how you feel. Express concern that you are not being properly heard. A good physician should be able to listen and take your problems seriously.

Keep Reading

It’s normal to experience grief when a child comes out as transgender. Here’s some ways that parents can navigate the process.

Ambiguous loss is the grief parents feel when they lose a transgender child to the process of transitioning. It’s called ‘ambiguous’ because it is not the concrete, tangible loss that follows the physical death of a child. For that reason, ambiguous loss may leave parents with feelings of unresolved grief.

Grief and loss are natural feelings when confronted with a child’s transgender identity because it shatters traditional images of gender. What it means to be a man or woman, girl or boy, informs much of our behaviour. This is especially true in family relationships, where roles are based on a set of pre-determined expectations for how we are supposed to act.

How a parent responds to their child’s transgender identity is critical to whether the transitioning experience is a positive or negative one.

How a parent responds to their child’s transgender identity is critical to whether the transitioning experience is a positive or negative one. It is essential that parents reframe the way they feel about their child’s transitioning, from regret and sadness to excitement about what the future holds.

The process of transitioning often challenges parents’ traditional gender role stereotypes

It’s essential because transgender and gender diverse people experience incredibly high rates of mental health issues. LGBTIQ+ Health Australia’s April 2021 report provides some alarming statistics. Of 14 to 25-year-olds surveyed, 48% had attempted suicide, 79% had self-harmed, 74% were diagnosed with depression and 72% with anxiety. A staggering 90% of transgender people aged 14 to 21 reported high or very high levels of psychological distress.

Given these statistics, it’s clear that for transgender children family support can be the difference between life and death. This is supported by research which shows that gender-affirming behaviour by family members has a hugely positive impact on mental health.

Gender-affirming behaviour by family members has a hugely positive impact on mental health.

Parents act as models to their children, based on socially and culturally constructed gender roles. Before a child is born, parents have started planning the child’s future and, usually, it’s gendered. So, having an emotional response to such a big event as a child telling their parents they’re transgender is normal. It is reasonable for parents to grieve the loss of an imagined future.

Embracing a child’s nominated gender has a hugely positive impact on their mental wellbeing

A 2020 study looked at whether parents had an emotional experience, like mourning, to their child’s transition. It was found that parents’ reactions followed the typical grief response. Not understanding what their child was going through led parents to experience feelings of denial, fear, anger, and powerlessness.

What the study revealed was that parents who best overcame their grief had a support system in place. Involvement in transgender advocacy groups reinforced the fact that, despite being transgender, their child was the same child they’ve always known. Importantly, realising their child was happy with their chosen gender had a positive impact on parental resilience when dealing with the transition process.

Research shows that children who come out as transgender already have a strong sense of their identity … They know who they are because they’ve always felt like that.

Research shows that children who come out as transgender already have a strong sense of their identity, usually from a very early age. They know who they are because they’ve always felt like that. It is important that parents understand that children change their gender to fit their identity, their identity doesn’t change because their gender does.

A child’s identity does not change just because their gender does

While there may be things that parents had planned to do with their child that they can no longer do, they will discover many new and different ways to bond with and love their child such as joining their experimentation with new clothing, helping them choose a new name or pronouns.

It is possible to remain loving and supportive while simultaneously experiencing loss, sadness, fear and confusion. Working through these feelings takes time. Just as a child needs compassion and support to navigate the transitioning process, so do parents.

Here are some ways parents can support themselves and their transgender child:

Don’t give in to fear. Fear can cause parents to push back or reject their child. This fear is underpinned by love, driven by a concern that the world is a harsh place for transgender people. Make sure the child knows they’re loved and supported.
Encourage exploration. Gender exploration is a normal part of a child’s development. Give children the freedom to explore their emotions about gender before they consider a permanent change.
Education is key. Get familiar with the information that is out there about gender expression. There are a lot of online resources available, such as Transcend, QLife, Rainbow Door, queerspace, and Transgender Victoria (TGV).
Create a safe space. Transitioning takes a long time and can be difficult. Encourage the child to openly discuss their feelings so they feel safe and protected as they transition.
Families need to transition, too. Each family member must shift their thinking and understanding. Take the time to process these thoughts and any feelings of loss.
Seek help. Ensure access to a team of medical and mental health experts. Identify allies at school, so the child knows where to go for support if they are bullied or excluded.

Yes, having a trans child means questioning personal views on gender. And, yes, it usually involves a lot of – sometimes uncomfortable – discussions with friends, relatives and complete strangers about the process of transitioning and what it involves. These conversations can evoke strong feelings in others that parents should be prepared for.

While the world might not always be understanding, parents can be.

But, while the world might not always be understanding, parents can be. A child might wear different clothes and go by a different name, but they’re still the person you know and love.

An understanding parent makes a world of difference to a transgender child

It’s important to remember that a parent’s grief and loss is theirs, not their child’s. Accept these feelings for what they are: natural and normal reactions. Parents need to work with their feelings, not against them.

At the same time, parents need to support, comfort, and maintain an open dialogue with their transgender child as they work through the process together. Recognise their child’s bravery and show gratitude. Parent and child will be so much the better for it.

Keep Reading