Women are used to being called hysterical. The very word itself comes from the Greek word, hysterika, meaning uterus. If you’re hysterical, your behaviour is marked by “uncontrollable, extreme emotion”.
We’re also used to having our emotions linked only to our hormones rather than the situation we’re in – “are you on the blob, love?” Used to dismissal – our valid upset over any infraction ignored. Our tendency for expressing emotions mocked. Accused of “turning on the water works” as if the ability to release tension through our tear ducts is a moral failing.
Yesterday’s news carried themes of structural and ingrained discrimination towards women of all ages and yet it was far from extraordinary. Having spent my life enduring various problems with my health, I know only too well how my status as a woman can affect how I’m treated. From obstetric violence during the pandemic right through to the routine prescription of the drug sodium valproate, via vaginal mesh treatments, there’s nothing much in women’s health that shocks me any more.
Baroness Julia Cumberlege revealed her Independent Medicines and Medical Devices Safety Review yesterday, which began in 2018 under the former Health Secretary, Jeremy Hunt.
The review covered the drug sodium valproate, vaginal mesh and a pregnancy test, Primodos.
“My official edict is that you should remain childless“
Here I have to declare a personal ‘interest’, in that I was advised to take sodium valproate, in 2014. A psychiatrist, who was seeing me after an intensely difficult period in my life, advised that I start it right away. Having spent most of my fertile life being careful with contraceptives yet always intending to have children, I said that I would not like to start something that had been known to affect fetal development: that once I was on it, I might find it hard to stop. Once I’d explained my reticence, the man who had spent the entire appointment ignoring me and typing on his computer finally deigned to look at me. Sighing, and steepling his fingers as he looked me up and down… my hair no doubt a bit of a mess, given my mental state and my body far heavier than he would have advised, he dealt a line that has haunted me through every pregnancy. “You should”, he said, with the gravity of a death sentence pronouncement “consider never having children at all.”
Every time that I struggle at all with my mental health – something many of us have battled, especially during the pandemic – it rings in my ears. Almost as loudly as when I was told, in my most recent pregnancy, by my GP “I can hear you, but I can’t hear your baby” when I asked for help. The words “you are more important than your baby” were also used. The most concerning thing being that of course I was getting in contact with the GP for help precisely because I was concerned for my unborn child as well as the two I already had. External pressures had grown to intolerable levels, yet I was only a vessel for the baby within – who has no legal rights until birth. Another man dictating my rights to me based on my uterus and its contents. His insistence that the baby’s rights would trump my own could have been fatal to us both were I not capable of advocating for myself and complaining. Not everyone is so able.
The monster of endometriosis
During the pandemic, many women and birthing right advocates have raised the alarm over the stripping back of hard-won birthing rights, so the review by Baroness Cumberlege has arrived in a time when many are already primed for speaking out regarding abuse of women.
In October 2019, the BBC ran a research study into the condition endometriosis, a debilitating condition for most sufferers, which causes unbearably painful periods, amongst other symptoms. Respondent numbers were huge, with 13,500 women joining together to express how endometriosis – and the response to it from the medical profession – has blighted their lives. In March 2020, the BBC ran another article suggesting that women are finally “being listened to” as it was revealed that the majority of those who are suffering so much from the condition just don’t experience enough sympathy from the GPs and gynaecologists who are supposed to help them.
Bethany, who is 19, told the BBC “The pain is like barbed wire wrapped around your insides and someone’s pulling it while at the same time an animal is trying to eat its way through you.”
Results from the All-Party Parliamentary Group for Endometriosis inquiry were due this month (July 2020) but the pandemic has put paid to that and the inquiry is currently suspended.
Bodyform has been widely praised for their advert examining #wombstories and the horrors of pain and trauma – as well as elation – experienced by anyone who’s ever had one. Sensitively portrayed, it shows all the choices women face around having children or choosing not to as well as the difficulties around period pain, fertility treatments, tragedy of loss and everything in between. I’ve never been quite so emotionally affected by an advert before, which is really a piece of art, sponsored by a company.
Vaginal mesh wrecks lives
After childbirth, many women struggle with urinary continence issues and some will also have pelvic organ prolapses (POP). The idea that you will wet yourself after having children is very much normalised through societal ‘comedy’ around wetting yourself on trampolines and the widespread availability of hygiene products to protect against what they innocently call ‘leaks’.
For years, patient advocacy groups like Sling the Mesh have called for investigations into recommended treatments for POP and stress urinary incontinence (SUS) – pelvic mesh. Once again, like with endometriosis and other health issues affecting women, those who complained had their pain and suffering downplayed over and over again by those they were relying on to help them.
Kath Sansom, founder of Sling the Mesh campaign said the report was “hard-hitting” and “harrowing” and “makes it clear that our medical establishment is deeply entrenched in institutional denial and misogyny”.
The review revealed that most women’s concerns and symptoms were attributed to “psychological issues” and that “anything and everything women suffer [was] perceived as a natural precursor to, part of, or a post-symptomatic phase of, the menopause”.
Avoidable suffering remained ignored
In revealing her review, Baroness Cumberlege said the scandal was “tantamount to a complete denial of their concerns and being written off by a system that was supposed to care,”
Baroness Cumberlege also said “much of this suffering was entirely avoidable, caused and compounded by failings in the health system itself. We couldn’t believe that people had gone through so much agony and suffering and had been ignored.”
Gaslighting from medics who are supposed to help us will not surprise many women who have experienced multiple health issues over their lives. Indeed, when 8 months pregnant with my second, a son, I was told by several healthcare professionals that there was nothing wrong with me while I was struggling for breath. I was told that it was normal that I couldn’t breathe properly at 35 weeks’ pregnant. Three GPs and a couple of paramedics all dismissed my concerns as I struggled to even walk across a room or navigate some steps. Having already had a daughter, I did know that some breathlessness was normal, but actually, the effects of several pulmonary emboli (blood clots) within my ailing lungs was the real issue – a life-threatening condition that was totally missed as my distress was put down to “pregnancy hormones”.
Don’t go breaking my heart – Elton John Versus Kiki Dee
If you’re a woman and you have a heart attack, you’re more likely to die (and this has been the case since 1984) because the signs of a heart attack differ from women to men. Only 1 in 8 women will have the classic chest pain – they get tired, restless and have indigestion and nausea. After surviving a heart attack, things don’t get much better, sadly. Women have an excess mortality of up to three times higher than men’s in the year after having a heart attack, according to the British Heart Foundation.
Men are the main subjects of the vast majority of medical research and when a woman comes in to to a medical setting suffering from a heart attack, she’s more likely to have her pain written off as anxiety. Anne Robinson, a GP, wrote passionately about these concerns in 2018, revealing the results of a longitudinal Swedish study of 180,368 people which revealed that, when men and women were treated equitably after a heart attack, their health outcomes were roughly the same.
In a time where equality and inclusion, inequity and discrimination seems to be the undercurrent within all news items, on a backdrop of a virus that’s taking the oldest and most infirm from us, I can’t help but wonder if times, they are achanging. Because an ill-wind now blows and many of us feel aggressively empowered to speak out against the injustice that we see. This review of abuses against women within a medical setting has come at just the right time to embolden health campaigners for women who can see how the pandemic has pushed back women’s rights a few decades – if not more. That the dearth of childcare disproportionately affects traditional childcare providers and means women are coming under even more pressure than usual to run our homes.
Given that Coronavirus is more deadly to men than women, might we finally see some change and recognition of how systemic discrimination – whether due to gender or race issues that are not always biological – but societal – can be fatal? Is it too much to ask that a world-changing virus could also be responsible for a radical shakeup of medicine and a catalyst for societal change? Surely life can’t just return to how it was before?
The underrepresented and seldom heard can only live in hope.