When she was 37, Eleanor* presented at a hospital emergency department with severe chest pain. She was diagnosed with slightly high cholesterol and sent home. Three days later, she suffered excruciating pain and was taken to hospital in an ambulance. There, she was asked if she had suffered from panic attacks and was left overnight in a cubicle, before doctors realised she was having a heart attack. She needed eight cardiac stents. “I am sure no man would be asked if they suffer from panic attacks while they’re having a heart attack,” she says.
A formerly active teenager, Helena was battling fatigue so extreme she couldn’t go to school. Her GP suggested a dietitian and a personal trainer; she was later diagnosed with Lyme disease.
Ciara was always exhausted and seemed to contract one virus after another. For years doctors told her she was just stressed. In fact, she had a debilitating and rare autoimmune disorder. “I just wish I’d been listened to years earlier and can’t help thinking that being youthful-looking, female and insecure had something to do with it,” she says.
“Medical gaslighting” is a controversial term that has emerged to describe a phenomenon some people – women in particular – may recognise. It refers to a patient’s feeling that their symptoms are not taken seriously, or are being misdiagnosed by healthcare professionals.
Research has shown that gender bias exists across many areas of medicine and science – from the way clinical trials historically failed to include women, to the under-diagnosis of heart disease in women. Research by the school of nursing and midwifery at Trinity College has noted that historically, “white middle-aged men were the model subjects in most funded cardiac trials ... This ’add women and stir’ approach to the implementation of research findings ensures that women will receive either inappropriate or sub-optimum cardiac treatment, whilst men receive a gendered advantage.” The paper cited research that has shown that “men are twice as likely to receive treatment [for myocardial infarction or heart attack] than women, even though women have symptoms as often as men, report an inability to work more often than men and have a higher mortality rate post myocardial infarction.”
One 2015 analysis of UK clinical data for more than 18,000 cancer patients found women typically take longer to be diagnosed with several types of cancer. A 2008 US study found women presenting to one hospital emergency department with acute abdominal pain were less than 7 per cent likely to be offered pain medication than men with the same symptoms.
We were really struck by the number of women who felt they weren’t being listened to when they went to their GP or consultant, that they were not taken seriously or their pain was minimised— Fianna Fáil Senator Lisa Chambers
Fianna Fáil Senator Lisa Chambers conducted an online survey on women’s health last year, in that more than 2,500 women participated. The initiative, which was part of developing her party’s policy on women’s health, involved asking women about their healthcare experiences. “We were really struck by the number of women who felt they weren’t being listened to when they went to their GP or consultant, that they were not taken seriously or their pain was minimised. The word ‘respect’ came up a lot,” she says.
Now researchers are interested in understanding why this is, and whether gender stereotyping might play a role. Are doctors more likely to attribute pain or exhaustion in women to non-physical causes such as stress?
When The Irish Times asked readers to share their experiences recently, more than 150 responses were received. Many women described feeling that they had not been listened to, or that their symptoms were dismissed. There were some frequently recurring themes, including delayed diagnosis of endometriosis and Lyme disease, or women being told that severe menstrual problems were just an unfortunate part of life for women. “My GP told me that some women lose up to a pint of blood on their period. I was made to feel like I was overreacting. I was essentially told to just get on with it so that’s what I did,” says one 23-year-old woman who suffered from what she describes as “biblical” periods.
Another woman was repeatedly told her debilitating periods were part of “the joys of being a woman”. It was later discovered that she had stage 4 endometriosis, “that had taken over my entire uterine cavity. A 7cm cyst had wrapped itself around my entire right ovary, causing irreparable damage to the ovary and Fallopian tube, resulting in a unilateral oophorectomy. My fertility was halved, I had to undergo hormone treatment and was put in a medically induced menopause as post-surgery treatment. This was the direct result of being ignored for years and my symptoms being passed off as ‘normal’.”
There is global evidence to suggest that women’s symptoms may sometimes be taken less seriously than men’s
The majority of doctors are caring, hardworking, attentive and thorough professionals, trying to do their best for too many patients in a pressurised system. Even the most dedicated GP practice does not have the resources to immediately test for every possible condition – even if they did, this wouldn’t always be best practice. In addition, some of the conditions suffered by the women interviewed for this story are rare for people of their age. Others have frustratingly vague or atypical symptoms, or are suffering from conditions that are difficult to diagnose without specific laboratory tests.
As one doctor wrote in response to the request for experiences: “A doctor’s job is to listen to the patient, and to make as assessment based on their symptoms, clinical examination and – where necessary – blood tests and other investigations. In the majority of cases reassurance can be given and always a safety net is put in place. So if their symptoms are not settling, or if the symptoms evolve, a review and re-evaluation are undertaken. There are a small minority of instances where reassurance is given at a point in time only for a subsequent re-evaluation to reveal an alternate diagnosis ... In my experience, this is rarely due to a doctor being dismissive, but instead is simply the nature of medical practice where time and resources are limited, and doctors strive not to over-investigate each complaint.”
There is still this assumption about who holds knowledge when it comes to medical questions, and what kind of knowledge matters when it comes to medical issues. And that knowledge exists on a gendered kind of hierarchy— Dr Marieke Bigg
Nonetheless, there is global evidence to suggest that women’s symptoms may sometimes be taken less seriously than men’s. In a study involving 239 Swedish interns of both genders, for example, student doctors were asked to recommend pain management for a bus driver who had a tense family situation. Some of the interns were told the bus driver was male; others were told they were female. The interns were more likely to refer the male patient immediately for tests. If they though the driver was a woman, “proposals of non-specific somatic diagnoses, psychosocial questions, drug prescriptions, and ... diagnostic support from a physiotherapist and an orthopaedist were more common”.
Dr Marieke Bigg, a sociologist and author of a new book, This Won’t Hurt: How Medicine Fails Women, says the concept of “medical gaslighting” is really “about communication. It is a kind of communicative disenfranchisement that women feel in a system that doesn’t always take their experience seriously”.
“You can’t separate science from culture. There is still this assumption about who holds knowledge when it comes to medical questions, and what kind of knowledge matters when it comes to medical issues. And that knowledge exists on a gendered kind of hierarchy, where scientific and medical knowledge is held in higher regard and is considered more authoritative than personal experience.”
This is particularly evident in areas related to reproductive or gynaecological health in women, such as endometriosis, that on average takes eight years to diagnose; heavy menstrual bleeding; infertility issues; pain during sex; or issues that occur after childbirth, including urinary incontinence.
Chambers agrees that it “is a cultural thing. The more women become better educated themselves to know what’s a normal period and what’s not, when to ask for help, the better”.
“They’re often called invisible diseases, because they significantly harm quality of life for women, but they’re not going to kill you,” says Dr Bigg. “That’s part of the reason they’re not always taken as seriously or not investigated. There is also a stigma preventing women from talking about their symptoms. It is a range of factors. But at the core of it is just it hasn’t been prioritised, it hasn’t been considered important science.”
All of this can create a perfect storm of silence, misunderstanding and misery. Associate professor of midwifery at Trinity College Dublin Dr Deirdre Daly – principal investigator on the Maternal Health and Maternal Morbidity in Ireland (MAMMI) study, that is carrying out longitudinal research on the maternity care offered to first-time mothers – points out that some of the issues are systemic. Maternity healthcare everywhere in the world “is all about the baby”.
The mother is discharged after six weeks, that means that long-term problems she may be suffering post-partum – like pain or urinary incontinence – are less likely to be picked up. “These problems are not life-threatening. But they leave women miserable. They wear them down,” says Dr Daly.
The quality of care women described to her doesn’t always meet the standard it should. “There are women in the study who tell us about absolutely delightful care experiences. There are others who describe care that is not acceptable, particularly for post-partum care. This is not unique to Ireland. Women, and these are all first-time mothers, talked about being dismissed, not heard, not listened to.”
Budget 2023 saw an allocation of €69.2 million for women’s health, including the National Maternity Strategy, the establishment of 20 one-stop “see and treat” gynaecological clinics and postnatal care hubs, that should help to deliver the kind of continuity of care Dr Daly believes women need.
“What women say they want is someone who asks, someone who listens, and listens attentively. That’s not an awful lot to ask,” she says.
Doctors are working under difficult conditions and systems that don’t always allow them the time they would like to spend with patients. Nonetheless, it is clear that many women feel systemic change is needed, including better training, more extensive research into women’s health conditions, and a more nuanced approach to diagnosing women’s symptoms. Some of this is already beginning to happen.
Chambers worked with the Irish College of General Practitioners (ICGP), to get funding from the Department of Health for a new clinical lead in women’s health, who was appointed last March. This is part of its focus on expanding ICGP training programmes in women’s health for Irish GPs. There’s no single solution, she says. “It’s about educating young girls and women, and educating GPs to be better informed.”
Asked about advice for women who are concerned they are not being listened to, Dr Bigg says: “I don’t think we need advice for women on how to advocate for themselves. I think medicine needs to change.”
Endometriosis: 'We're treated like hysterical drama queens.'
Eleanor: ‘The doctor said I was suffering from panic attacks. I was having a heart attack’
One Saturday afternoon in 2005, Eleanor – who was then a fit, healthy, non-smoking 37-year-old – had just dropped her daughter off somewhere, and she was at home alone. Without warning, “I had this awful sensation. It was like a real tightening of my chest. I felt as if there was something on top of my chest. I was finding it difficult to breathe. I broke out in a sweat. It was painful.”
She phoned her husband to come home and someone else to collect her daughter. “After about 15 or 20 minutes, the pain was starting to ease. I rang my friend who’s a nurse. She said, ‘No, no, go to A & E, because of your family history, you have to get that checked’.”
Two close family members had heart attacks in their 40s. “So I did the responsible thing. I went to [a Dublin] hospital and was waiting for ages on a trolley. They did my family history, they did an ECG and everything seemed normal. They checked my oxygen levels. And they said I had slightly raised cholesterol, but that there was nothing wrong with my heart.”
They didn’t send her for an angiogram, and instead discharged her with a prescription for cholesterol tablets. “I knew something wasn’t right. The pain level was quite high. But I didn’t know anything about angina because I was only 37. So I went home. And then on Tuesday evening, I’m sitting down watching TV with my husband, and I get this absolutely colossal pain. Much worse than Saturday. I collapsed. He called an ambulance.”
The chest pain was still severe when she arrived at the hospital, but she was moved from the resuscitation area into a cubicle in the emergency department. “The doctor came in, and I said, ‘There’s something really badly wrong. This is really painful. It’s not normal.’ And he said, ‘You suffer from panic attacks.’ I said, ‘I don’t. I’ve never had panic attacks . There’s something seriously wrong with me. I’m in terrible pain.’ So he said, ‘I’ll give you morphine’.” He gave her morphine and left.
“I was in that cubicle for six hours, in pain the whole time.” She had no call button and spent the night just “trying to breathe through it, like you do in labour”.
The next morning, she overhead someone nearby saying, “the 37-year-old lady’s cardiac enzymes are raised. She’s having a heart attack.”
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After that, she says, “all hell broke loose”. She ended up requiring eight stents in her heart. Her arteries were in spasm. “Every time they tried to put one stent in another artery would shut down. So that’s why I ended up with the eight stents. And I was in there for four hours.”
These days, her health is good, “but I have to pace myself. I think there is damage to my heart.”
She has learned to be “more assertive” in her interactions with doctors. As Dr Bigg writes in her book, heart attacks can present differently in women – symptoms can range from fatigue, nausea, jaw, back or arm pain or shortness of breath.
However, Eleanor had what are commonly regarded as the more typical symptoms of severe chest pain and clamminess. “Think of what would happen if a 37-year-old man presented with the symptoms of a heart attack. They would have gone to the ends of the earth to go through all the checks with him. I was told I was having a panic attack.”
Asked for advice for other women who feel they’re not being listened to, she is reluctant to put the onus on them: “When you’re not well and feeling vulnerable, it’s difficult to stick up for yourself. I’m not sure there’s not much more women can do. What I would hope we might get out of this article is that it becomes part of a doctor’s training. It’s documented everywhere that women are not listened to, that women don’t get the same amount of pain relief as men do. That has to change.”
Ciara: ‘I didn’t get listened to because I was young and female’
“I felt, in general, I didn’t get listened to because I was young and female, and I wasn’t the most confident person,” says Ciara.
Since childhood, she suffered from unusual, severe tiredness, as well as near-constant viruses and infections. “There was one or two doctors I saw a few times, and the fact that I went to them a few times” really should have raised a red flag, she now thinks. “It wasn’t normal. I was taking two days off every two weeks with viruses. I would spend the whole time in bed, barely able to get up to even cook for myself. I would get really, really tired before my period – not just before my period, but especially then – and I would just get, ‘Oh, that’s a pity’. I suppose they just thought I was a hypochondriac.”
It was only after she found a large lump under her arm that she got a diagnosis of a rare autoimmune condition (that she prefers not to name as it is rare enough to identify her). The condition causes different symptoms depending on that organs are affected, but a common one is extreme tiredness. “It’s incurable, but at least I know it’s not my imagination and can take steps to manage it.”
Now that she has “a name for it” she finds her interactions with healthcare professionals have improved. “Until I went and presented with a lump, something physical, I just wasn’t taken seriously. I felt I wasn’t listened to.”
Valerie and Helena: ‘If you say ‘Lyme disease’, they think it’s all in your head’
Helena was an active teenager whose energy levels suddenly plummeted when she was in first year in 2017. “She was so chronically fatigued, she didn’t have the energy to get up and go to school,” says her mother, Valerie.
A GP recommended a dietitian and a personal trainer, despite Helena’s athletic build. “I thought that was totally dismissive,” says Valerie. “I wanted to know why she was so exhausted. There had to be a reason behind it.”
It took three years and a conversation with a friend of Helena’s who had been diagnosed with Lyme disease, a tick-borne infection, for them to get the answer. Valerie arranged to have Helena’s blood sent to a German clinic specialising in the disease to finally get the same diagnosis.
Incidence of the disease is rising as a result of climate change, and infectious disease consultant Dr Jack Lambert recently told The Irish Times it may be going under-recorded in Ireland. Without better education for GPs and consultants in Ireland, improved diagnostics and research to improve understanding of these conditions, “patients will continue to be left undiagnosed and untreated”, he warned.
Several women shared stories of delayed diagnosis of Lyme disease with The Irish Times. Symptoms can include a distinctive rash, migratory arthritis, Bell’s palsy or a range of neurological, rheumatological or cardiological symptoms. “As a self-employed professional woman with two young children for many years, my GP told me I was just ‘burning the candle at both ends’. I needed lifestyle changes they said, more exercise and a better diet. I could barely function and manage the bare minimum of activities. It turned out I had Lyme disease,” said one woman. Another was referred to a hospital’s psychological services before eventually getting her Lyme disease diagnosis.
A year after her daughter’s diagnosis, Valerie herself was feeling severe exhaustion and pain. “I am a teacher and I could no longer write on the board. I couldn’t drive beyond 10km because physically holding on to the wheel was too painful. I was surviving on two or three hours’ sleep a night. It infiltrates all of your systems.” She sent her bloods to the lab in Germany and was also diagnosed with Lyme disease.
They are now both getting treatment in Ireland, and have since each received a triple course of antibiotics. But Valerie is concerned that they started antibiotics too late to have a significant effect. “Some people get instant symptoms. But in other people it can be burrowing away in your system for about a year before it takes hold.”
The medication has had a catastrophic effect on Helena’s digestive system. Because of this and her other symptoms, she has had to move to a private school so she could continue her education online. “She hasn’t finished an entire meal in over a year,” Valerie says.
They have both since travelled to a clinic in Europe for a range of non-medical treatments that have helped to ease symptoms.
Valerie believes there needs to better recognition of the disease in Ireland and earlier diagnosis. She recalls a conversation with a relative who is a healthcare professional. “She said to me, ‘In all my years, I have never come across one woman with a diagnosis of Lyme disease – let alone two in the one house.’ As if I was making up for a bit of attention. If you say to someone, God forbid, I have cancer, they understand, they’re sympathetic. If you say you have Lyme disease, they think it’s all in your head.”
*Names of patients have been changed