'Your symptoms are part of being a woman': UCC study to explore diagnostic delays for women
Women frequently report their symptoms being normalised, minimised or psychologised, in interactions with GPs and consultants. File photo
Despite growing awareness of gender inequality in healthcare, women in Ireland continue to face long and painful delays in getting diagnosed for chronic health conditions. Many continue to be told that their pain is ‘normal’ or part of being a woman, that their dizziness is just anxiety, or that nothing is physically wrong.
Across Ireland, women living with endometriosis, migraine, POTS (postural orthostatic tachycardia syndrome, a type of dysautonomia), premenstrual dysphoric disorder, and other poorly understood chronic health conditions consistently describe years of searching for diagnoses, a pattern widely reported across patient support groups, advocacy groups and online communities.
These conditions can cause a wide range of impactful symptoms yet remain under-recognised, under-researched, and poorly managed.
Many of these conditions are not rare, and some, including migraine, POTS, and reproductive conditions are becoming more common, or more severe following covid-19 infection. They can profoundly impact on quality of life, from missed work and education, social isolation, to a loss of independence.
Progress has been made in Ireland in reproductive and perinatal health, however many chronic and multisystem conditions remain under-prioritised. Women are disproportionately affected by migraine, dysautonomias like POTS, autoimmune diseases, chronic pain conditions and post-viral conditions like ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).
These conditions are under-researched, can fluctuate across the menstrual cycle, and can present differently in women than in men, presenting additional challenges for doctors to diagnose and treat them.
International research shows that migraine is the leading cause of disability in women under 50. Yet less common but severely disabling forms, such as vestibular and hemiplegic migraine, are frequently misdiagnosed or dismissed.
POTS, a nervous system disorder, causing rapid heart rate, dizziness and fatigue is often mislabelled as anxiety. ME/CFS, characterised by severe fatigue and cognitive dysfunction is often stigmatised and psychologised.
Chronic conditions which impact on multiple organ systems often fall between specialists, making it challenging for patients to find consultants with the expertise to manage them, and multidisciplinary teams rarely exists to manage them effectively.
The reasons for these diagnostic delays are multi-factorial.
Decades of gender bias in medical research mean health conditions that disproportionately affect women have been under-funded and under-studied in women, while medical training has relied on male “norms” that fail to capture how conditions may present differently in women, and how women may respond differently to medications.
An overstretched healthcare system compounds these issues.
Challenges also occur in patient-doctor interactions. Women frequently report their symptoms being normalised, minimised or psychologised, in interactions with GPs and consultants. This is often referred to as ‘medical gaslighting’, when a healthcare professional dismisses or downplays a patient’s symptoms, sometimes even leading the patient to doubt their own experiences.
It can take many forms: brushing off symptoms as normal, blaming stress or anxiety, minimising pain, focusing on weight or lifestyle instead of underlying causes, delaying tests or referrals, or letting gender, racial, or cultural biases influence care.
Understandably, this has serious consequences for both physical and mental health. Delays in diagnosis can mean living with a condition without appropriate treatment, sometimes allowing symptoms to progress or worsen.
Repeated dismissal is associated with negative impacts on mental health, including healthcare-related anxiety and trauma, and can lead patients to avoid seeking care, in turn compounding diagnostic delays.
Covid has also left a mark. Conservative estimates indicate that at least 10% of those infected with covid-19 develop Long covid, a multi-system condition with over 200 documented symptoms. It appears to affect women more often than men, and many patients in Ireland continue to struggle with lasting symptoms and limited access to care.
Medical gaslighting has been widely reported by patients in research, the media, and by advocacy groups.
According to the HSE’s FADA Survey (2024), over 75% of respondents living with Long covid symptoms reported experiencing at least 10 symptoms in the previous week, as well as significant impacts on mobility, communication, social interaction, and caregiving.
Nearly half reported Long covid-related changes in employment. Despite these impacts Long Covid Advocacy Ireland and the media have reported many facing barriers to accessing tests and medications through public Long covid clinics, reflecting serious gaps in care.
Faced with life-changing symptoms and barriers to care, patients have built large online communities. These networks often share evidence-based diagnostic criteria, recommend doctors with expertise, and crowdsource strategies for self-management, resources that patients can struggle to access elsewhere.
Yet these patient-led efforts have sometimes resulted in these conditions being labelled as “Tiktok disorders”, and when patients arrive at medical appointments informed about their symptoms, they may be accused of consulting “Dr Google”.
While some misinformation can circulate, these communities have become a lifeline for many in supporting them to obtain diagnoses and treatment.
In recent years, Ireland has made significant strides in improving women’s health through The Women’s Health Action Plan launched in 2022, including the establishment of the free contraception and HRT schemes, and specialist menopause, fertility, and endometriosis hubs.
These newly-established supra-regional centres for the treatment of endometriosis are a welcome step towards expanding access, and create the potential for future availability of gold-standard treatment, excision-surgery, for which many women currently travel abroad to obtain.
While this is important progress, women’s health goes beyond reproductive health, and patients report gaps in care for chronic health conditions.
Women are the largest user group of digital health technologies, using these tools to track symptoms, track menstrual cycles, and identify patterns when managing complex health conditions.
FemTech refers specifically to technologies for women’s health, an industry which is booming, and which holds real potential to improve understanding of women’s health.
However, there are growing concerns regarding the privacy of user data collected through Femtech products, and often these technologies are not designed to track multiple or co-occurring health conditions.
Despite this, women see the value of this data in understanding their own health, and how it could aid in diagnosis and clinical decision-making between patients and health care providers.
Listening to women is core to improving women’s health, as they are uniquely positioned to identify gaps in their care. Research we are conducting at University College Cork aims to do just this.
Our research focuses on diagnostic delays, symptom dismissal, and explores the value of digital health technologies, especially in those patient-doctor interactions.
We hope this research will help shape better policy and practice for women’s health.
Link to survey
- Jenny Cooney-Quane is a Research Associate and Dr Sarah Foley is a Lecturer in the School of Applied Psychology, University College Cork.
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