Helen Kinsella, former Wen board member, now lives in Canada. Inspired by her work at Wen, she has recently launched the Women’s Health Experience project as a means to gather information about women’s health issues. The aim is to better understand gender issues in the country, providing people with both a forum to share their experiences while also working towards awareness and a potential campaign.
How often have you felt that because of your gender, you have been misunderstood in your health needs or worse, been dismissed, and ended up feeling more vulnerable or suffering in silence?
It is not everyone’s experience, but when you start listening to women, you start to see patterns. Perhaps you feel that your mental or physical health is at risk because of your role and responsibilities, your job, or your environment. You may not have an issue with the health system at all; you may have an illness or condition that has different implications for you as a woman, and which may feed into a wider picture of women’s health.
CONNECTING OUR HEALTH WITH THE ENVIRONMENT’S HEALTH
If you are a Wen member, you have understood that the connections between our bodily health and environmental health are undeniable. If you are Black, Person of Colour or an Indigenous woman, LGBTQ or gender-non-conforming person, you may well have felt discrimination on a number of levels as you navigate the health system. Alternatively, you may have positive stories of how you have dealt with health concerns, and what you have found effective.
Inspired by my past work as vice-chair of Wen, I recently launched the Women’s Health Experience project as a way to gather information about women’s issues. The project has begun in Canada, where I now live, serving as an initial platform to expand the reach of Wen’s groundbreaking work. The aim is to better understand gender issues in the country, providing people with both a forum (in English and French) to share their experiences while also working towards awareness and a potential campaign.
HEALTH AND WEN’S WORK
While Wen works specifically at the intersection of gender and the environment, it is clear to me that the theme of health features in all of Wen’s work; whether campaigning for safer menstrual products, supporting Women of Colour in local food-growing projects, advocating for healthy homes and cosmetics, or raising awareness about the disproportionate impact of climate change on women. In life, it is no different; the importance of our mental and physical health courses through everything that we do.
“ In life, it is no different; the importance of our mental and physical health courses through everything that we do”
HEALTH MATTERS AREN’T GENDER NEUTRAL
Ensuring good health for everyone is clearly crucial, so why this focus on women and those with women’s health issues? Because we know that health matters are not gender-neutral. Yet a male bias has unfortunately pervaded the health system, scientific research, and policy-making. The lack of knowledge about bodies other than that of the ‘standard’ male is a symptom and consequence of gender discrimination, intentional or unintentional.
THE GENDER GAP
As has been increasingly publicised, women have traditionally been excluded from clinical trials, for example, and thus from medical knowledge production, even though immune, endocrine, cardiovascular and reproductive systems operate differently in men and women; they have differing fat levels and metabolism; and are therefore susceptible to different diseases. This exclusion has meant a lack of information about the effects of drugs and illness patterns in women, with life-threatening results. Among the many consequences of this gender data gap is that cardiovascular disease, despite being the number one killer of women in the UK, continues to be mis-diagnosed and under-treated in women, who often present different symptoms and risk factors than men. If the data is not there for women, think of all that is missing for transgender people and those who don’t gender-identify.
WOMEN AND CLIMATE CHANGE
In addition, studies have shown that women are affected disproportionately by climate change and weather-related disasters, since they are more likely to live in poverty than men, and have less access to human rights such as the ability to freely move and acquire land. UN figures indicate that 80% of people displaced by climate change are women; their roles as primary caregivers making them and those for whom they are responsible – more vulnerable when flooding and drought occur.
WHAT WORKS FOR MEN
What are supposedly neutral – or what we have understood to be neutral approaches often mean what works for men, or a certain category of men. For example, under the 1951 UN Refugee Convention, the definition of refugee is said to have been interpreted through a framework of male experiences. This has meant that in the past, many claims arising in the context of gender-related persecution, such as the use of rape as a weapon of war, have gone unrecognised.
Coronavirus provides a recent, useful point of reference in this context. While tackling the pandemic from what would be a supposedly neutral vantage point, government measures overlooked the harsh consequences for the millions of people – mostly women suffering domestic violence. This is hardly a non-negligible factor when making national policies: worldwide, according to the WHO, almost one-third (one-third!) of women who have been in a relationship report that they have experienced some form of physical and/or sexual violence by their intimate partner in their lifetime. And those are just the cases reported. The Catalan regional government said that calls to its helpline in the first few days of the confinement period had risen by 20%; other governments have published similar data.
“According to the WHO, almost one-third (one-third!) of women who have been in a relationship report that they have experienced some form of physical and/or sexual violence by their intimate partner in their lifetime”
TAKING A GENDERED APPROACH
In her book, ‘Invisible Women: Data Bias in a World Designed for Men’, Caroline Criado Perez illustrates how, in so many different ways and circumstances, a gendered approach is favourable, necessary, beneficial for everyone. In one case, she describes how the seemingly gender-neutral approach to snow-ploughing in a small Swedish town was actually, unintentionally, being designed around the needs of men; a subsequent analysis of the different ways in which women and men got from one place to another was hugely beneficial, reducing the people admitted to emergency centers – women in particular and had a corresponding economic benefit in the form of lower healthcare costs. Among many other important factors, she points out that women do a whopping 75% of the world’s unpaid care-work, with an obvious impact on their mental and physical wellbeing.
“Women do a whopping 75% of the world’s unpaid care-work, with an obvious impact on their mental and physical wellbeing. Caroline Criado Perez
IDENTIFYING RISK FACTORS AND PATTERNS
It is important to point out that a gendered approach is not just about recognising where women’s health care falls short, but also understanding and identifying the different risk factors and illness patterns for different groups. Women, for example, suffer from depression at higher rates than men, but men are more likely to commit suicide. Women consult health-care services more often than men, with men described as more reluctant to discuss problems and seek help. Men have lower life expectancy than women, but as the BC Women’s Health Foundation in Canada points out in heterosexual relationships, a woman typically cares for her husband at the end of his life, and then goes on to live an average of eight more years without the same intensive personal care.
STARTING A HEALTH PROJECT
Beyond the official data, it would be a lie to say that my own personal experiences do not play a role in my motivation to start a women’s health project: as a Wen devotee; as an individual and family member who has experienced gender-related inadequacies in the conventional medical system; as a mother of daughters; as a reflexologist primarily treating women; and as a former anti-sex trafficking campaigner.
My own stories include the GPs who shrugged their shoulders when I reached out about my breastfeeding difficulties as a new mother, before I was referred, in one case, to a male health worker who scarcely knew what to say; my sadness while listening to my friend’s accounts of her dealings with health professionals on being diagnosed with breast cancer; and my sorrow and grief in the face of the failure of medical health professionals to pay heed to my mother’s complaints of pain, despite her history of breast cancer (her tumours were detected by an acupuncturist, to whom she resorted after finding no other avenue to treat her pain).
“My own stories include the GPs who shrugged their shoulders when I reached out about my breastfeeding difficulties as a new mother, before I was referred, in one case, to a male health worker who scarcely knew what to say”
On the subject of breast cancer: Criado Perez points out that “over the past 50 years, breast cancer rates in the industrialised world have risen significantly – but a failure to research female bodies, occupations and environments means that the data for exactly what is behind this rise is lacking.” While undetected cancer or undiagnosed pain is by no means the exclusive domain of women (my father, too, went through years of relentless stomach pain before he died, without ever receiving a diagnosis), we hear stories time and again of women feeling dismissed when consulting doctors. Now, we also have studies demonstrating how women are under-diagnosed and mis-diagnosed, notably in the case of heart-attacks, where women’s symptoms may include neck, jaw, shoulder, upper back or abdominal discomfort, among others.
“Over the past 50 years, breast cancer rates in the industrialised world have risen significantly – but a failure to research female bodies, occupations and environments means that the data for exactly what is behind this rise is lacking” – Caroline Criado Perez
I cannot count the number of times I have spoken to women or read stories of those who have, for example, endured battles for freedom of choice in how they give birth; sadly struggled with breastfeeding while receiving no support from the medical system; and been disregarded when consulting doctors for their period pain, finding out years later that they had chronic conditions. (That said, the aim here is not to demonise all doctors; for all the negative testimonies, there are perhaps just as many recounting people’s positive experiences with the health system. It is, rather, to point out that a gendered approach to healthcare is woefully lacking).
VAGINAL MESH IMPLANTS
In my practice, I treated a woman who had experienced excruciating pain as a result of the insertion of a vaginal mesh to treat incontinence, and though her discomfort continued, she could not face its removal as a solution after the original trauma. I went on to learn about the scandal of these procedures around the world. Tens of thousands of women have brought lawsuits following unsuccessful mesh implants, devices approved by regulators before trials were conducted to establish if they were safe or effective. It is said that for years, the medical profession generally failed to take the suffering of these patients seriously.
INCONTINENCE, A NATIONAL HEALTH PRIORITY?
Incontinence in itself is a national health scandal. I have read that a staggering one in two women in the United States suffers from incontinence symptoms. Another report points out that if the number of people suffering from this urinary condition were to form a country, it would be the third largest in the world! Of those people, 12.4% are women and 5% men. And because we do not prioritise women’s health, and have made women feel invisible and ashamed of their bodies, 50% of those afflicted apparently do not seek help. In France, perineal re-education is provided for free to women after they have given birth. There, it is rightly regarded as a national health priority, crucial for women’s urinary health for the rest of her life.
Then there are the testimonies, for example, of women in detention who don’t have access to menstrual products (in a 2018 report to the Home Office, the UK’s Independent Custody Visiting Association described where menstruating women in detention centres were left to bleed without products); the horrific prevalence of sex trafficking (the targets of which are overwhelmingly female) in all corners of the world, and the fact that its victims can so often be moved, ignored or unseen, across borders; and the continued commodification and objectification of girls’ and women’s bodies, with a resulting impact on mental and physical wellbeing. One researcher and author has recently coined the term ‘beauty sickness’ to describe how women, primarily, focus so much of their energy, emotions and money on their physical appearance, that it takes precedence over the other more important aspects of our lives.
WOMEN’S HEALTH EXPERIENCE
So, we want to hear your voices and see if we can make a difference. Relating my own experiences reminds me first, that it is important to speak whenever we can, even if the impact is only at the local level. When I finally took stock of my treatment at my local GP surgery in London, a year after my daughter was born, I wrote to the clinic, as did a friend about her situation, asking for better support for breastfeeding mothers. Our points seemed to be taken on board. That letter may have been a game-changer for some of the mothers that came after me. Second, over the years, I have drawn comfort from reading the shared experiences of other mothers in books, online or in other fora; I am hoping that Women’s Health Experience can provide the same outlet for people with women’s health issues.
Going beyond the individual level, as Wen has pointed out in the past: healthy women mean healthier, happier families and communities. While local health projects can contribute immensely to an individual’s, group or community’s wellbeing, there is also no denying that we need to take stock of wider, systemic discrimination that becomes a burden to us all. When we realise that we are often only seeing the world through the lens of one particular reality, healthcare equity for all will become more of a reality.
Women’s Health Experience Canada is a project that seeks to gather the health stories of women, and those who have experienced women’s health issues, in Canada. We welcome your contribution, whether it relates to your own personal experience or your community or environmental health. You may feel that your health issues are not being adequately addressed. You may have particular health-related challenges because of your role and responsibilities or your cultural background. Perhaps you feel that you have experienced gender discrimination in a medical environment, or you know someone who has been in this position. This is an inclusive space that is open to the contributions of all those who identify with the issues raised here. For more information visit www.womenshealthexperience.org; tweet @Womenshealth_ex