Hysterical Women of the Week: 28 October

Slightly later than usual, here’s this week’s roundup of sexism in women’s healthcare

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Selma Blair’s MS diagnosis took 15 years

Last weekend, actress Selma Blair posted on Instagram about being diagnosed with multiple sclerosis – after struggling with the symptoms for 15 years.

I have had symptoms for years but was never taken seriously until I fell down in front of [a neurologist] trying to sort out what I thought was a pinched nerve. I have probably had this incurable disease for 15 years at least.

Rachael Sigee, writing for The Pool, says:

This is a woman in an incredibly fortunate position. She is successful and white, with financial security and access to excellent healthcare. And, even with these many layers of privilege, it still took 15 years for her to find an explanation for her symptoms. And she’s not the first woman who we might think is above being ignored by doctors. This year, there have been a number of stories about high-profile women being failed by the doctors supposed to take care of them, from Serena Williams to Lena Dunham. If even these women are struggling to be heard, diagnosed and helped, what hope do women without access to their resources have?

Because women are taught that our bodies will likely betray us, and that pain is a part of being female: we bleed and cramp and cope. As a result, we live with pain and discomfort without asking for help for much longer than we should. We bear the load of domestic and emotional labour, acting as carers for everyone except ourselves, while women’s health remains a murky and uncharted corner of medicine.

The gender bias falls broadly into two camps: reproductive health and auto-immune disorders… Unconscious and conscious bias work together, to ensure that women’s health complaints are minimised, ignored, trivialised and belittled. Female patients are told they are hysterical, hypochondriac, anxious or paranoid – that it is all in their head. The issue has been referred to as “healthcare gaslighting” and inspired several books, this year, researching the issue, including Maya Dusenbery’s Doing Harm: The Truth About How Bad Medicine And Lazy Science Leave Women Dismissed, Misdiagnosed, And Sick.

And, when women finally find themselves listened to, they must then face the dearth of research into conditions that disproportionately affect women, and the fact that, when studies are conducted, they often use male test subjects, making the results less useful to women’s treatment.

Indeed our guest blogger this week, Sarah Cope, wrote about her own experiences of struggling with the chronic pain of fibromyalgia for 16 years before finally being taken seriously.

Sarah was initially referred for psychological therapy, and told: “It’s not quite like we’re saying it’s all in your head… but it is, basically.” You can read her story here.


#DoctorsAreDickheads

The deliberately provocative #DoctorsAreDickheads trended on Twitter this week, with patients sharing stories of being dismissed, disbelieved, or otherwise mistreated by their doctors. Although not a gender-specific hashtag, it’s notable that the overwhelming majority of stories come from women – many of them living with long-term and chronic health conditions.

As CTV News in Canada reports:

One woman using the hashtag shared that she spent 20 years in both chronic and acute pain before she was diagnosed with a group of disorders that affects connective tissues supporting skin, bones, and other organs.

“My right hip and shoulder dislocate on a daily basis. I have a dozen comorbidities. I was told it was my weight, anxiety or all in my head. It was undiagnosed Ehlers-Danlos Syndrome,” she wrote.

Another woman recalled a blunt conversation she had with a neurologist about the symptoms she was experiencing from multiple sclerosis.

“Asked neuro what I should do about pain and numbness from multiple sclerosis. He told me I should be grateful I wasn’t in a wheelchair, and come back when I needed one,” she said.

On the same theme, a Mumsnet thread started this week attracted 321 responses in less than a week, when the poster asked: Aibu (am I being unreasonable) to ask you to tell me your experiences of being dismissed by medics as a sick woman? I promise to listen. One Mumsnet user writes:

I know of several girls who were diagnosed with cancer after months of being fobbed off and told they were attention seeking. It is a very serious problem in the medical profession. Chronic health problems are treated as hysterical in many cases.

Other stories on the thread follow similar patterns:

I actively avoid the GP to my detriment now. I’m sick of being patronised and dismissed. I have constant back pain and have done for five years (it’s one of those things), dizziness and instability for three years (tried antihistamines which made it worse and was told that was all available), psoriasis (steroid creams made no difference; live with it). Heavy painful periods are just part of life apparently. I know more can be investigated.

In my teens, my periods were debilitating. Pain so that all I could do was crawl around the floor. For five days a month I couldn’t eat or sleep and had constant diarrhoea. Was told by male doctor that this was normal and I was a women now and had to just deal with it. Then I started to bleed and didn’t stop for weeks. I thought I was dying of a sexually transmitted disease! (Had just started to be sexually active) and took myself off to the local family planning clinic. Within an hour I was diagnosed with severe endometriosis and ovarian cysts – one of which was the size of a grapefruit and had surgery scheduled for the following week.

Chronic fatigue, pain all over my body, muscle weakness, palpitations, loss of coordination, nerve disturbance and numb patches. I was told I am clearly tired because I have children. Totally ignored the fact that I feel like I have flu when it hits, my kids sleep through the night, rest doesn’t help. I’ve been told it’s all in my head. Probably anxiety. Even after being under a neurologist who is investigating, my GP doesn’t seem to think any of this is anything other than health anxiety or attention seeking.

Most recently; I’ve been going to my doctors for YEARS about heavy, long, very painful periods that seemed to be getting worse over time. I was told to try exercise, to try yoga, to take paracetamol. Nothing worked. Eventually I made a nuisance of myself (after being bullied back to the GP – I was reluctant as I thought I’d be dismissed again) and was referred for an ultrasound, which showed results that suggested adenomyosis. My doctor dismissed this. The first gynaecologist I saw dismissed this, then tried to discourage me from having diagnostic surgery, saying “I guess you might have minor endometriosis…?” Luckily I asked to switch consultants and got a great one – he did the diagnostic surgery…and I’m having a hysterectomy next week. The pain wasn’t in my head, I’m losing my uterus, cervix and one ovary, and it turns out what he found correlates pretty closely to where I feel it the most… despite the first gynaecologist telling me “you can’t have pain there”.


And finally…

A new exhibition at the Royal College of Nursing opened last week, exploring women’s health nursing past and present. The wandering womb is on until 22 March 2019, and looks at menstruation, menopause, pregnancy loss, gynaecological cancers, and much more. Describing the exhibition, the RCN says:

Women have long been seen as at the mercy of their biology.

In the ancient medical world it was believed that a ‘wandering womb’ caused suffocation and death. Menstruation and childbearing were thought to make women the weaker sex, both physically and mentally. By the late nineteenth century, it was deemed scientifically proven that women’s biology made them less rational than men, unfit to participate in many areas of public life.

Rising above these attitudes, a century ago, women began securing the right to vote in the UK. Around the same time, nursing was formalised as a predominantly female profession. Since then, nurses have taken a leading role in challenging assumptions of women’s health. Yet myths and misconceptions remain widespread. Social changes continue to alter women’s biology, as they start periods earlier and live longer beyond the menopause. What is ‘normal’ for women? And why has women’s health long been considered ‘dirty’ nursing?

You can visit the exhibition at RCN Library and Heritage Centre from 19 October 2018 until 22 March 2019.It was curated by the RCN Women’s Health Forum, the History of Nursing Society and Library and Archive Service, and features items from the following lenders: The Science Museum Group; Royal College of Obstetricians and Gynaecologists;  Royal Pharmaceutical Society and Pharmacopoeia duo Liz Lee and Susie Freeman.

 

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