By Chloe Olivia Sladden
Medical Herstory is a not-for-profit organisation, which deals with medical sexism, shame, and stigma. It was founded in 2019 and it is run by founder Tori Grace Ford, who initially started Medical Herstory as a personal (since turned global) project. In a society where misogyny and sexism are still looming in health and medicine, Medical Herstory is the heroic lionhearted platform we all need right now. The non-profit organisation strives to combat gender equality for women in medical care, education, and practise. It was a result of Tori sharing her own lived experience with chronic yeast infections for her student newspaper at school.
Tori has one favourite line of hers that she has heard that inspired her to write the story, which was when a doctor told her “some people get colds, some people get chronic yeast infections” and was subsequently prescribed “quite trivial or Victorian” solutions. This led Tori to a point where she felt she “was just done with the medical system. I felt I wasn’t being believed. We know illness affects people in a lot of different ways and those ways were not getting addressed”.
“I went on to share my story about the emotional turmoil that had been going on, how I kept sharing my story and no one was listening, and I wanted to reclaim my voice. So, I went on to write it, not knowing if anyone would pay attention to it, and it went on to make the front page and get a lot of attention, which was terrifying and awesome at the same time” reveals Tori.
The response she received from sharing her story, including the discomfort and medical dismissal of her condition, as she was not taken seriously as a woman who knew something was not right with her body and tried to seek out the health care and respect she was entitled to. “What I heard from other people wasn’t any kind of shame or disgust that I was afraid of, it was other women and gender diverse people saying me too”, I’ve had similar experiences, I’ve never shared these, I’ve never felt comfortable to talk about, thank you so much for starting the conversation. And I knew that we didn’t have a centralized platform to share these stories, and that’s why I created one.”
Once she saw the interest and requests to get involved with her project, where important female medical stories, information and experiences can receive a public platform, Tori decided to expand Medical Herstory. “This fall, we did our first recruitment cycle, we got 40 amazing volunteers and then in this winter, we got up to 70 and now in this cycle, we’re probably going to get to a 100 across 24 universities in 7 countries (such as Canada, UK, US, Australia, Japan, Sweden and South Africa. It shows how passionate people are about this issue around the world, and unfortunately how much gender bias is in medicine and how much work there is to do. It’s amazing having such diverse perspectives coming to the table and contributing equally.”
Gender bias is one of the key things that Medical Herstory is trying to tackle, specifically for women who are not believed, not taken seriously and not given accurate, quality, or respectful medical care and treatment. Women do not feel science and medicine are “objective, neutral spaces” where they are concerned. This is because, as Tori suggests “systems of sexism, racism, shame, and stigma infiltrate health care systems and impact the care that patients receive. So, the first step in solving the problem is acknowledging and unfortunately some people aren’t aware this is even a problem until they’re facing it or someone they care about is.”
Examples of gender bias for women is when medical conditions are dismissed because practitioners assume something due to their patient’s gender. This includes “Ovarian Cancer in women being dismissed as menstrual cramps and being told to go home, queer experiences often being erased when doctors assume patients have boyfriends and being denied STI testing, stories of how common conditions that disproportionately affect women/those assigned female at birth are often overlooked as all being in women’s heads.”, says Tori.
Along with other stories of gender inequality such as “stories from people living with endometriosis and waiting ten years to get a diagnosis or to be believed and people’s stories of pregnancy during the pandemic and how they did not get adequate care.” all of this contributes to why something like Medical Herstory is absolutely vital.
There are many levels that Medical Herstory works on, the societal, educational, and patient levels. For example, the societal level is about “how sexism and stigma are pervasive” and how patients who seek out health care may be marginalised and then be “less likely to be believed and taken seriously”. This comes as a result of a lack of knowledge doctors have on certain topics, and a lack of discussions in how they “can perpetrate bias and harm", especially if female medical conditions are not covered in medical classes or places of work.
The lack of knowledge or discussion regarding female health and experiences in the medical industry can be because the research is simply not out there. Tori reports that “in the UK, it makes up about 2% of research funds that go into women/assigned female at birth sexual and reproductive health. Even if a doctor does believe you and wants to help you, which I think most doctors do, they simply lack the resources, the treatment, the answers, or awareness to be able to do so”, which is something Tori believes needs to change.
Medical Herstory hopes to bring about this change by doing workshops, taking “rich medical herstories” on the website, and using these stories as case studies in a classroom setting, allowing them to see the direct impact of their work. This curriculum has been aided by Tori and Medical Herstory, from patients and medical students globally, about “why gender bias persists and what we can do about it today” The main mission is to give “those taboo topics space to talk about them and expand our work”, adds Tori.
Storytelling is at the heart of what Tori and her Medical Herstory volunteers do, using their three main workshops. One is for patients and how to self-advocate in healthcare because “we’re not taught how to go to the doctor, explain our pain, how to get answers and understand why we’re not being taken seriously. It also allows women to share experiences and get involved in a supportive community.
There is also a writing workshop for people to reclaim their stories which “details how to tell those narratives/traumas/experiences of sexism, racism, and ageism/ableism along with providing space and support in the writing process of those stories.
“So, we’ve gotten creative held 20 events reaching 2k people so far. We have our annual feminist health research conference where we uplift research that is not getting acknowledgement” says Tori. Along with “comedy nights to movie nights to open mics and panels.
One of the main portfolios of work that Tori founded with Medical Herstory is the Patient Advocacy Portfolio, which Tori states is “where Medical Herstory really started”. This is all down to how Tori created this portfolio to support and empower people to share stories and grow confidence in a growing community. It is definitely something needed for women in today/s society, as you can sometimes “feel so alone no one else is going through what you’re going through and because of the societal system there, you can feel it’s inappropriate to talk about your body, especially if it’s messy or embarrassing or in pain. So, it breaks down those barriers and empowers people to share those stories” whether that’s on the website, workshops, social media, in person and so on.
The portfolio also includes tips on “how to advocate for yourself, when it’s time to say bye to your doctor and ask the care you deserve. Tips on how to ask for a second opinion”, which is not something often discussed, as this is something that can be harder to get as a woman seeking heath care.
The next portfolio is about Undoing Stigma, it is Medical Herstory’s key public engagement project, which centres around topics that “are so stigmatised it can be hard to talk about them”. Undoing Stigma is about undoing difficult topics and presenting them “in a more light-hearted or engaging way and normalising these conversations, so you can talk about your vagina or your body and not feel shameful or feel like it’s taboo and unladylike or threaten your respectability."
Tori explains that this is the project where they aim to have the broadest reach and help to “engage people who might be supporting people with chronic illness or the public who never heard about many of these conditions. Raising awareness is the main component of undoing stigma.” One of the ways Tori has been doing this is through Medical Herstory’s YouTube douc series which makes information more digestible.
Medical Herstory hopes to advocate and undo stigma, sexism and shame involved in the same social processes that stereotype women, and thus makes it harder for them to be believed and taken seriously when it comes to heath care and treatment. Tori reveals they do this by combining patient advocacy, undoing stigma, and medical education portfolios to have the “most powerful effect” as “huge problems need big innovative solutions to tackle them”. For example, Tori explains her intentions are for Medical Herstory to “educate practitioners to be more open and aware of experiences and prevent gender bias” and to “empower patients to have the resources, the language, the confidence, to ask for the care they deserve.”
It is people like Tori and non-profits like Medical Herstory that are helping to change “the narrative of sexual, reproductive and mental health, it’s important to have these conversations and people shouldn’t feel stigmatised for them." What makes it all worth it for Tori is seeing the direct impact and “hearing from women, and gender diverse people about how sharing their story has helped them”.
This leads into the creative expression that Tori hopes Medical Herstory will continue to provide for patients and members who want to share their stories and express themselves outside of oppressive norms and liberate their conscience. In medical spaces, personal and lived experiences may be “reduced because our system has been conditioned and built for ten-minute appointments, a lot of that is dehumanising.”
“The creative expression gives agency back to individuals, to share their stories on different topics. We have been mindful about how we help people share their stories and provide graphics and animation to represent these stories visually see it and we allow authors to come back at any time and change their stories, because these stories are ongoing” adds Tori. And this translates to the “work we do, in academic and expressive social spaces”, including the work done by Medical Herstory’s volunteers in countries all over the world.
Jassica, a 2nd year Biomedical Student at University of Hertfordshire, discussed her role as a recently recruited volunteer for Medical Herstory in the UK. The motivation to volunteer came from Jassica’s overseas volunteering, and her interest in ending conditions such as HIV and AIDS. “One of the things I found was helpful was the stories I heard from people, and in school I was learning about it on a cellular level, so that was powerful” to hear women’s personal medical experiences, and not just on the cellular factual levels, most stories are given on.
The pandemic gave Jassica a chance to regain her motivation and contribute to an important field, whilst learning new skills. “It was by chance I saw them [Medical Herstory] accepting volunteers on Handshake, looked at the work on their website and thought wow this was amazing, and it’s crazy this isn’t widespread. I loved the aspect of storytelling and telling experiences that way, so that was what impacted me to help”. Jassica has since contributed to Medical Herstory’s Patient Advocacy portfolio, especially in its publishing sector.
If you would like to get involved with Medical Herstory, they run recruitment cycles in the summer, fall and winter. Tori commented that herself and other members/volunteers would “love to have you and that it is a great chance to network with people all over the world and build skills in workshop delivery, event planning, social media management, publishing, and storytelling.” You can also make donations, follow them on social media, and book or support their workshops and services. Even on their Instagram page “you learn something every time you log on, keep up to date, and lovely facts”, adds Jassica. You can also learn more about and keep up to date with Medical Herstory on their Facebook and Twitter pages too.
Medical Herstory’s annual feminist research conference is coming up, so you will also have the opportunity to submit your own experiences or research to Medical Herstory (also anytime on the website and in periodicals in the summer), as founder Tori comments that “we’d love to help amplify your research and that’s a great place to challenge what we think of as objective medicine.”
As Medical Herstory is expanding and reaching more women all over the world, Tori reveals there are certain goals and missions that Medical Herstory would like to accomplish. From eliminating “sexism, shame and stigma from health experiences and advancing gender health equity, to ensuring everyone feels comfortable in their body, and in seeking medical care where they will be believed, cared for, and treated equally. We are hoping to globalize and mobilise change-makers and all our amazing volunteers, to be there in their communities and help us advance this mission. I feel confident that we’ve made amazing progress and are going to keep achieving more each day.”
If we want to strive for gender equality in medicine and help to erase the shame and stigma surrounding gendered health, platforms like Medical Herstory are absolutely vital.