March 7, 2024

Getting real about women’s health – Fatal delays and the misdiagnosis epidemic

This year, the UN theme for International Women’s Day is Invest in Women: Accelerate Progress. We’ve spent some time reflecting on what this means in healthcare, and our conclusions were pretty sobering. As is the Curious way, we’ve set about thinking what the healthcare industry, and communications, can do to tackle the issue of gender inequity in health. So today we kick off our blog series Getting real about women’s health.  

 

The gap in women’s health, whether that’s delays to diagnosis, misdiagnosis or relating to mortality and morbidity has been well documented. We also acknowledge that the experiences of women are not homogenous: women of colour often have worse healthcare experiences and face greater stigma than their white counterparts, women from low-income backgrounds may struggle to access preventive care, and more. This intersectional lens will be applied throughout the blog series, taking a deeper dive into the experiences of women of colour in our next piece on the pain gap. 

 

A note on language here, when discussing women’s health, it is important to recognise and respect the diverse spectrum of gender identities. While acknowledging that the term ‘woman’ encompasses a wide range of experiences, we focus on conditions and therapies specific to individuals assigned female at birth. Later in the series we’ll also look at how non-binary people and trans men may miss out on vital healthcare (particularly screening) due to barriers of access. 

Dismissing symptoms

If you’re a woman, or if you have any contact with the women’s health space, the dismissal of symptoms probably isn’t news to you. While it might not be discussed widely, it’s not uncommon for women to be sat with their friends over brunch or drinks, à la Sex and the City, discussing their experiences – painful sex, agonising periods, chronic neurological symptoms – and the ‘advice’ they’ve received.

They’re stressed. It’s just hormones. It’s normal. This is just part of life.

Have they tried practicing mindfulness? Have they tried losing weight? Are they sure it’s actually affecting their daily life?

Women’s health conditions are often quickly explained away. Menstrual pain is normalised, mood changes are written off as stress, concerns about libido or sexual function are put down to aging or being overworked. While compassionate listening is ignored in favour of convenient explanations, women are simply left to wait.

 

“In just the last few years, there is much more understanding of menopause symptoms amongst GPs and, importantly, willingness to act on them. When I went to my GP in my early 40s describing the symptoms and asking for blood tests to explore perimenopause, I was told I was too young and likely depressed. I was confident the reasons I was feeling low was because I hadn’t slept properly for about a year. I hadn’t slept properly for about a year because I was experiencing perimenopause. Despite being health literate, I quietly went away and suffered for another 2 years before trying again.” 

 

This dismissal has led to significant delays in receiving a correct diagnosis, with women spending years in agony as the rest of their lives – work, family, friends – also suffer without answers. A survey published in early March found that on average, women wait nearly nine years to receive an endometriosis diagnosis. (1)

 

This minimisation of women’s health experience is so commonplace that people rarely bat an eye when it is used to justify the deprioritisation of women’s health services. Since the pandemic, gynaecology waiting lists have grown by 60%, with many of these conditions being seen as benign. (2) These mounting waiting lists have in part resulted in 1 in 3 women being forced to live in limbo for three years before receiving a diagnosis. (3) While not all of these conditions are cancerous, they certainly aren’t without harm. These conditions can take a significant toll on women, leading to worsening mental health, impacts on their interpersonal relationships, and lost days at work. For women from marginalised backgrounds, the impact of these delays is only compounded.

 

The medical gaslighting of women isn’t isolated to women’s health conditions specifically but extends across all therapy areas and can have devastating consequences.

 

• Research from 2020 found that women wait five times longer than men for a heart failure diagnosis, leading to a poorer quality of life, mental health issues, and increased risk of avoidable death. (4)

• Heart attack misdiagnosis is also common, with previous research finding women were 50% more likely than men to receive an incorrect diagnosis following a heart attack, impacting treatment decisions, and leading to an increased risk of death. (5)

• In axial spondyloarthritis (axial SpA), research from NASS found women waited an average of two years longer than men for a diagnosis. (6)

• For Crohn’s Disease, men receive a diagnosis in an average of 12 months, despite taking up to 20 months for women. (7)

• For Ehlers-Danlos syndrome, men were diagnosed in four years while women waited an average of 16 years. (7)

• Even with cancer, women have been found to experience a longer amount of time between symptom onset and diagnosis than men. (8)

 

The dismissal of women’s experiences is so ingrained into our thinking as a society that women are often facing it on all sides – many of us have seen the viral TikTok trends (or have real-life experience) of a woman venting about a symptom she’s experiencing, only for her well-meaning partner to say something along the lines of “have you drank enough water?” or “just stop stressing about it.” Stereotypes of women over-reacting or not being able to handle pain, or expectations about how women and girls should behave not only exist on the outside but are internalised by women and girls – often from a young age.

A case in point: ADHD and Autism in women

The rise of health information being shared across platforms like TikTok and Instagram has led to many women realising they have been living with undiagnosed ADHD and Autism for years – but that it’s simply not presented in the ways we’ve been taught to expect. ADHD and Autism Spectrum Disorder (ASD) have been historically recognised as mainly affecting men and boys, resulting in women and girls being overlooked. When it comes to ASD, men and boys are three times more likely than women and girls to be diagnosed as autistic. (9) In childhood the ratio of boys to girls with ADHD is roughly 3:1, whereas in adulthood it’s closer to 1:1 which suggests that women and girls are underdiagnosed. (10)

 

While symptom presentation differs for each individual, it’s been demonstrated that women and girls are often better at masking their symptoms and disguising their experiences because of societal norms. From youth, girls and women are encouraged to display ‘feminine’ qualities: empathy, compliance, and organisation.

 

Many girls will learn quickly to hide their symptoms, working very hard to create reminder systems to stay on track, learning how to imitate active listening behaviours or mirroring others’ facial expressions, pre-empting, and practising responses to people, or regularly pulling gruelling all-nighters to meet a deadline.

 

“I’ve been told I can’t have ADHD because I did well in school and I’m not “hyper”. What they (and I include doctors in this) don’t see are my racing thoughts, chronic insomnia, the exhausting systems I’ve had to set up to be able to be productive at work and how much I struggle with zoning out in meetings. It’s exhausting.”

 

The pervasive stereotypes of ADHD and ASD seem to say that the conditions only exist if they are disruptive: affecting relationships with others, chronically showing up late or forgetting things, or showing outward signs of overstimulation and distress as many women and girls seem to be getting by just fine – “you can’t have ADHD, you made it to this appointment early!” – many with ASD and ADHD end up going undiagnosed for years, left to figure it out on their own. This lack of diagnosis can take its toll, with many feeling isolated, experiencing undue stress, and often blaming themselves.

 How did we get here?

As you might imagine, there is a whole host of reasons for the women’s health gap. It’s well established that underfunding in women’s reproductive health research and exclusion from clinical trials mean that women are underserved by medical science. Recent research suggested that only 2% of medical research funding is spent on pregnancy, childbirth, and female reproductive health. (11)

 

We also know that women have traditionally not been well-represented in clinical trials. For decades women were excluded from clinical trials, partly due to (unfounded) concerns that hormone fluctuations make it difficult to study women. (12) If we are charitable, the exclusion may (sometimes) have well-meaning roots. The thalidomide scandal rightly highlighted the need for extreme caution around the usage of medication during pregnancy, but Dr. Allyah Abbas-Hanif (Honorary Senior Clinical Lecturer at Imperial College London) points out that the horror of this scandal has led to protectionism that has excluded swathes of women from clinical research. Speaking on this topic in August 2023, Dr Abbas-Hanif said:

 

“When you develop a drug in a white 50-year-old male, you are not accounting for the physiological and biochemical differences in others – not just women, but in children and ethnic communities too.” 

What needs to change?

An article in the British Medical Journal went as far as to suggest that the UK’s healthcare system has been designed around the needs of just half the population (13), so it might be tempting to admit defeat. But that’s not in our nature here at Curious Health, so let’s look at where change has already been happening and what can be done when it comes to systemic change. While our later blogs in this series will focus on the changes that we, as healthcare communicators can make, highlighting the systemic change that needs to happen is where we must start.

The Women’s Health Strategy

The issue has already been recognised at a Government level, with the publication of the Women’s Health Strategy in 2021 and last year’s enquiry into women’s health care experiences. These were key steps towards improving care, by listening, recognising, and responding. This year’s 2024 Women’s Health Priorities look towards improving care for women and girls, including providing better care for menstrual and gynaecological conditions, through producing new guidance, promoting better access to contraception, and establishing women’s health hubs to improve access to care. It also looks towards buttressing maternity before, during, and after pregnancy, including a focus on supporting those who experienced birth trauma and prioritising mental and physical health throughout the pregnancy journey. But we know these aims must be supported on the front lines of healthcare access.

Educating HCPs

Healthcare professionals play a significant role in women’s healthcare experiences, but we need to start by calling out the obvious: healthcare professionals are experiencing unprecedented time pressures, and many don’t have the freedom to engage with people in consultations in the way they would like to. This is undeniably part of the problem. But we also have to acknowledge that HCPs are susceptible to the same biases as the rest of society. Already part of the Women’s Health Strategy, there is a need to address the underlying biases and assumptions that many healthcare professionals may have. Working to address gender bias, weight bias, and racial bias are integral to ensuring healthcare professionals are listening and responding to women with compassion and empathy, as opposed to making assumptions and writing them off. There also remains a need for better education around women’s health conditions, conditions that disproportionately affect women, and symptom recognition to improve diagnoses and care. (14)

Representation in clinical trials and medical research

Improving research will also help to contribute to this understanding, also being recognised as part of 2024’s Women’s Health Priorities. Considering sex as a biological variable across the research spectrum is fundamental to understanding how the female body may respond differently than a male’s. The King’s Fund has summarised the impact of this, “… that women have to be included in research, moving away from male research subjects being the default, which has resulted in less effective treatment and more side effects for women.” Improving the representation of women in clinical trials and medical research is part of the NIHR Research Inclusion Strategy, but we will say this needs to go a step further by including pregnant and breastfeeding women. Understanding the unique responses and experiences of pregnant and breastfeeding women in clinical trials plays an important role in ensuring they receive safe and adequate care.

Women’s stories

Whilst we are cautious to suggest that it is down to women to fix the structural and individual bias that exists within healthcare, our voices do have a role to play. This is where healthcare communications really come into its own. This isn’t just about finding women who are willing to speak about sometimes very personal experiences in public. It is also about the skill of healthcare communicators to support people through this process, in a way that means the experience is positive for the storyteller, as well as educating other women, men and healthcare professionals.

 

In our next blog, we’ll be examining campaigns surrounding the gender health gap and diving deeper into where health communications can make a difference.  

 

Curious how you can start closing the gender health gap in measurable ways, rather than just words on a page? Team members at Curious Health have expertise across a variety of conditions and therapies in women’s health and experience in crafting insights-driven, community-led campaigns that resonate. Get in touch for a chat by emailing [email protected]

 

 

References: 

1. Devlin, H. and correspondent, H.D.S. (2024). Women in UK waiting almost nine years for endometriosis diagnosis, study finds. The Guardian. [online] 4 Mar. Available at: https://www.theguardian.com/society/2024/mar/04/women-in-uk-waiting-almost-nine-years-for-endometriosis-diagnosis-study-finds?CMP=Share_iOSApp_Other. Last accessed: March 2024.

2. Devlin, H. (2022). Dismissal of women’s health problems as ‘benign’ leading to soaring NHS lists. [online] the Guardian. Available at: https://www.theguardian.com/society/2022/jun/02/dismissal-of-womens-health-problems-as-benign-leading-to-soaring-nhs-lists. Last accessed March 2024.

3. Carter-Jones, R. (2022). 6 million await diagnosis for women’s health conditions | King Edward VII’s Hospital. [online] King Edward VII’s Hospital. Available at: https://www.kingedwardvii.co.uk/about-king-edward-vii/news/6-million-await-diagnosis-for-womens-health-conditions. Last accessed: March 2024.

4. Oppenheim, M. (2020). Women ‘forced to wait more than five times longer than men’ for heart failure diagnosis. [online] The Independent. Available at: https://www.independent.co.uk/news/health/heart-failure-women-gender-longer-wait-uk-gp-a9691431.html Last accessed: March 2024.

5. British Heart Foundation (2016). Women Are 50 per Cent More Likely than Men to Be Given Incorrect Diagnosis following a Heart Attack. [online] Bhf.org.uk. Available at: https://www.bhf.org.uk/what-we-do/news-from-the-bhf/news-archive/2016/august/women-are-50-per-cent-more-likely-than-men-to-be-given-incorrect-diagnosis-following-a-heart-attack. Last accessed: March 2024.

6. National Axial Spondyloarthritis Society. (2022). Women wait longer for a diagnosis and have a significantly worse experience of healthcare than men, study reveals. [online] Available at: https://nass.co.uk/news/genderinequalities/ Last accessed: March 2024.

7. Dusenbery, M. (2018). ‘Everybody was telling me there was nothing wrong’. [online] Bbc.com. Available at: https://www.bbc.com/future/article/20180523-how-gender-bias-affects-your-healthcare Last accessed: March 2024.

8. Din, N.U., Ukoumunne, O.C., Rubin, G., Hamilton, W., Carter, B., Stapley, S. and Neal, R.D. (2015). Age and Gender Variations in Cancer Diagnostic Intervals in 15 Cancers: Analysis of Data from the UK Clinical Practice Research Datalink. PLOS ONE, [online] 10(5), p.e0127717. doi: https://doi.org/10.1371/journal.pone.0127717.  Last accessed: March 2024.

9. The Women’s Institute (2022). Women and Girls with ASD and ADHD under-identified, undier-diagnosed, and under-supported. [online] The Women’s Institute. Available at: https://www.thewi.org.uk/__data/assets/pdf_file/0004/555520/Women-and-Girls-with-ASD-and-ADHD-Briefing.pdf Last accessed: March 2024.

10. Attoe, D.E. and Climie, E.A. (2023). Miss. Diagnosis: A Systematic Review of ADHD in Adult Women. Journal of Attention Disorders, [online] 27(7), p.108705472311615. doi: https://doi.org/10.1177/10870547231161533. Last accessed: March 2024

11. Cawthera, E. (2023). Q&A: How can medical science better serve women? | Imperial News | Imperial College London. [online] Imperial News. Available at: https://www.imperial.ac.uk/news/247194/qa-how-medical-science-better-serve/ Last accessed: March 2024.

12. Anwar, Y. (2020). Lack of females in drug dose trials leads to overmedicated women: Gender gap leaves women experiencing adverse drug reactions nearly twice as often as men, study shows. [online] ScienceDaily. Available at: https://www.sciencedaily.com/releases/2020/08/200812161318.htm. Last accessed: March 2024.

13. Modi, N. (2022). Closing the gender health gap: the importance of a Women’s health strategy. [online] The British Medical Association. Available at: https://www.bma.org.uk/news-and-opinion/closing-the-gender-health-gap-the-importance-of-a-women-s-health-strategy#:~:text=Improved%20healthcare%20for%20women%20requires. Last accessed: March 2024.

14. GOV.UK (2022). Results of the ‘Women’s Health – Let’s talk about it’ survey. [online] GOV.UK. Available at: https://www.gov.uk/government/calls-for-evidence/womens-health-strategy-call-for-evidence/outcome/results-of-the-womens-health-lets-talk-about-it-survey. Last accessed: March 2024.