ILLUSTRATIONS Emmie McGee
For reasons I’ll admit I’m ignorant to (and Google failed to explain), March commemorates a number of health awareness initiatives – it’s Ovarian Cancer Awareness Month, Brain Tumour Awareness Month and Deep Vein Thrombosis Awareness Month, along with featuring Eating Disorders Awareness Week, World Hearing Day, Young Carers Day and World Down Syndrome Day.
It’s also Endometriosis Awareness Month, commemorated by some during the first week of the month, with UK Endometriosis Awareness Day falling on the 23rd March while World Endometriosis Awareness Day is the following week, meanwhile in the US it’s in October. The uncoordinated way in which these events have been organised is a frightening parody of how endometriosis healthcare is provided to those who suffer from the disease.
For those who begin experiencing symptoms, a dire reality awaits – it takes on average 7 years to reach a diagnosis, there is no known cure and treatment options available vastly vary based on postcode lottery and privatisation of services. The condition – which is defined by having cells similar to the ones in the uterus found elsewhere in the body – causes symptoms ranging from painful, heavy and irregular periods, pain during sex and infertility to irritable bowel syndrome, fatigue and mental health implications, among many others. And yet, the conditions’ association with “bad period pain” has meant many peoples’ experiences have been discarded, undermined and not believed.
For Emmie-Jane McGee and Kiera Waring, the lack of accurate information online brought the pair together. “We met through Instagram due to shared interests and quickly realised we both have endometriosis,” Emmie explains. “We became incredibly reliant on each other for support and talked a lot about how there isn’t a great deal of support out there for endometriosis sufferers. On our worst days, we’d never had places to turn before meeting each other. We want to provide that safe space for people who are diagnosed, who aren’t, who want to learn and who want to raise awareness.”
We want to provide that safe space for people who are diagnosed, who aren’t, who want to learn and who want to raise awareness.
“I’ve always wanted to be realistic about living with endo and to me that means being cynical and self-deprecating and talking about subjects people consider taboo,” Kiera adds. “When I befriended Emmie I just knew she was someone I wanted to work with on it – she’s such a talented artist and I knew she could help give it the edgy, punk aesthetic I had in mind.”
Combining their lived experiences with light-hearted humour and Emmie’s artistic capabilities, the duo launched the Instagram account Sick Sad Girls back in January and have been steadily building a cult following ever since. Reading their candid accounts of their medical journeys, I’m taken aback by their bravery and tenacity in the face of countless clueless medical advisors. Having both started experiencing symptoms of abdominal cramping and irregular bleeding since they were teenagers, both women have been battling against preconceived understandings of the disease for over a decade. “It is not a ‘bad period’ nor is it a ‘reproductive disease’,” Emmie explains, with a pitch so well-rehearsed I fear to think of how many times she’s been called on to explain her experiences. “It is a full-body, inflammatory disease that affects every organ in the body and can turn the most fit and healthy, outgoing person into a shell of themselves.”
Far from being a rarity, endometriosis affects 10% of women worldwide – some 176 million people. At least 1.5 million of these reside in the UK, with the actual figure expected to be up to double this due to difficulties receiving a diagnosis. Problems receiving a diagnosis are part of the wider gender health gap in the UK. In the same way that gender discrimination affects women’s offices, pay packets and relationships, it also affects our ability to access appropriate healthcare services and the validity society gives to these conditions. Those who suffer from endometriosis fall victim to the astounding holes in understanding, research and funding that ‘women’s health’ often receives, despite the fact that an astounding one in three women will experience severe reproductive health issues in their lifetime.
“Did you know that a drug for blood pressure was trialled many years ago – it was found to be effective in treating menstrual cramps. It was also found to cure male impotence and that was deemed more important and Big Pharma funded it. That’s now known as Viagra,” Emmie explains. “Modern medicine has a huge misogynistic issue that needs to be dealt with immediately and women and gender non-conforming people need to be heard. The time is up and this is another reason for The Sick Sad Girls – we want to be insufferably loud about these issues until changes are made.”
Modern medicine has a huge misogynistic issue that needs to be dealt with immediately and women and gender non-conforming people need to be heard.
“No offence to men in the business, but all of my worst experiences have been with male doctors,” Kiera admits. “One male doctor threatened to discharge me for “being difficult” because I said I didn’t want to get the implant or coil because of the potential side effects on my mental health. I ended up giving in out of fear of no longer being treated.”
But as Emmie and Kiera are amplifying through their platform, endometriosis is not only a reproductive health condition – so why is it considered one? Less than 2.5% of publicly funded research has been dedicated exclusively to reproductive health, and as such, so little is still known about this largely invisible condition. This is also due to women having been historically excluded from clinical trials due to our hormonal fluctuations and because data from research often wasn’t analysed on the basis of gender.
We still don’t know what causes endometriosis, for instance, and according to research database PubMed, while there have been 1,954 clinical trials studying erectile dysfunction, there have been just 393 looking into female sexual pain. Similarly, there have been five times the amount of research into erectile dysfunction, which affects around 19% of men, than there has been into premenstrual syndrome, which affects 90% of women. So much so that we still don’t know what causes PMS.
In recent years, some progress has been made thanks to a few high-profile cases including actress Lena Dunham, dancer Julianne Hough and pop artist Halsey all opening up about their experiences with the disease. In 2020, mainstream women’s publications including Cosmopolitan and Refinery29 released studies about gender health bias. And just this week, the Government launched a call for evidence on the gender health gap to improve healthcare for women.
But when asked if the increased attention had made a measurable difference in the understanding from strangers or medical professionals, their response was ardent – no.
“Honestly, it hasn’t changed much at all and that’s one of the biggest indicators that endometriosis still needs to be talked about now more than ever,” says Kiera. “If these huge celebrities are raising awareness and I’m still finding myself having to explain it to every Tom, Dick and Harry then clearly more work needs to be done.”
Emmie says, “A lot of [support online] that does exist is quite ‘live, laugh, love’ and centres around the generally white, middle class, cisgender and heterosexual woman’s experience. We were so bored with the lack of resources available, especially those that are inclusive of the LGBTQ+ community, as well minority ethnic groups which have a higher rate of not being diagnosed with endometriosis correctly.”
We were so bored with the lack of resources available, especially those that are inclusive of the LGBTQIA+ community, as well minority ethnic groups which have a higher rate of not being diagnosed with endometriosis correctly.
The statistics for minority women in the healthcare system are even more frightening – Black women are five times more likely to die in childbirth and the post-partum period than white women, and are half as likely to be diagnosed with endometriosis as white women. Additionally, over 15% of trans women have been subjected to inappropriate curiosity when accessing healthcare, which can stop them wanting to go back to the doctor. It’s imperative to use inclusive language when speaking about endometriosis, as it is not only women who suffer from the condition, and to appreciate the intersections with gender and income that disproportionately affect people of colour in the healthcare system.
In light of the ongoing lack of support available, what can be done to help endometriosis sufferers?
“Listen and have empathy,” suggests Emmie. “Challenge problematic healthcare. Use the corrective inclusive language and pronouns. Reach out. Do you know someone with endometriosis? Can you collect their prescription for them? Make them a cuppa? Offer a listening ear, or more tangible support such as a hug or hot water bottle.”
But ultimately, nothing is more validating for those who suffer with the disease than for those working around them to understand what actually happens to their body, in order to be able to appropriately respect their boundaries, make appropriate accommodations and be an activist against the gender health gap. “The best thing I can hear a loved one hear is ‘I went away and did some research on endometriosis. What can I do for you in the present and what can I do for you more widely?’ Likelihood is; a cuppa and some codeine right now and spreading the word and speaking up for us when we need it most,” says Emmie.
Kiera adds: “Treat it like they would any other disease or illness. Endo is just as common as diabetes, so why haven’t as many people heard of it? Do the research to better understand what we go through, donate to charities, sign petitions and if you do know anyone who suffers from endometriosis reach out to them and ask if there’s anything you can do to help – sometimes we just need a friend who will listen to us vent.”
Follow The Sick Sad Girls on Instagram. To find out more about endometriosis, visit Endometriosis UK.
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