Beauty, Dignity and Options
Our committee member Sarah Ho interviewed Rebekah Lloyd, founder of This Independent Life. This Independent Life is building a program to help build capacities within organisations and employers to take women’s existence seriously. Rebekah also organised The Future of Endometriosis conference in March 2023, which inspired many of the reflections presented in this article.
An introduction to Rebekah Lloyd
The conference took place in a grade one listed heritage building in the heart of Bloomsbury, London, several doors away from the BMA House – home of the British Medical Association – and just five minutes east of University College Hospital on Euston Road. A man sat at the concierge directed me towards large, white double-doors at the end of a carpeted hall, from behind of which I heard the pleasant chattering of women’s voices. Coats were hung neatly outside, and a yellow poster read in cheerful font: The Future of Endometriosis. I entered the room. The walls were a calm pastel green and natural light streamed in from shallow bay windows. Eight round tables had been set up, where women mingled and chatted. They dressed in jeans, long skirts, and fashionable blazers. At the back of the room, we could help ourselves to complementary hot tea, coffee and biscuits, with three different varieties of milk. At the front of the room, three women sat on plush blue armchairs. They took turns to tell their stories: ‘My name is … and I am an endo warrior’.
The patient panel was first on the agenda at the Future of Endometriosis Conference. The entire event operated on a pay-what-you-can basis and was organised entirely off the back of one woman. Rebekah had previously had a successful career in the pharmaceutical industry and then led her own marketing agency. She quit her job after receiving an endometriosis diagnosis. On the day of the conference, she wears an ankle-length skirt, pink flowers printed on a structured silky black material. Her charisma is undeniable as she addresses the audience: ‘Interest. Investment. Innovation. I want this to be a positive day. If we’re going to make change with endometriosis, it’s going to be a collective effort.’
A few months before the conference, Rebekah and I met at her home in Bermondsey, London. Her flat has a minimalist design with a well-curated set of furniture. Stone candle stand on stone table. Record player with a vinyl cover placed on top. Potted plants. Reed diffusers. Cushions and throws. She tells me that she is in the process of looking for more partners for the conference, and is hesitant about one potential partner because they are ‘depressing and I don’t want them to bring the vibe down’. For Rebekah, it is important that her event has ‘dignity, design and beauty’. ‘I want it to be fun and positive and for attendees to go away feeling energised and hopeful’, she tells me.
She had put together a packed agenda. After the patient panel, more than a dozen technologists, scientists and entrepreneurs take turns to present their products and research, most of which are in their nascent stages. A researcher presents her work creating a ‘census’ of endometrial-like cells. An entrepreneur demonstrates how data and machine-learning will contribute towards more precise recommendations for pelvic floor therapy. An ex-NHS clinician presents her new ‘digitally-enabled care pathway’ that ‘puts women at the centre’ of their health. The data will be used to build ‘a diagnostic tool and a digital therapeutic’ and ‘facilitate clinical insight and scientific breakthroughs,’ she tells the audience.
Since 2018, the amount of funding for Femtech companies has more than doubled. Options available for women are finally increasing. Upon the endometriosis diagnosis, Rebekah quit her job and started building a community of women, many of whom had been diagnosed with women’s health conditions such as endometriosis and PCOS, and were frustrated with the way they had been treated in the UK public healthcare system. In contrast to the passive and hopeless feeling of sitting on waiting lists, Rebekah’s ‘future of endometriosis’ is full of hope and dignified options. Her community would be ‘a safe space for women to feel heard and to have their existence taken seriously’. The hope and dignity this gives them would be a part-solution of its own and one option for these women that did not exist before.
Femtech: a relationship between beauty, dignity and options
When I speak to Rebekah, I notice how passionate statements about the nature of being and human connection are woven into her opinions about technology and healthcare. She tells me, ‘I see each of us as part of the world – we are all made out of carbon, water, etc. We come from this world, and this makes us all the same and it makes us all connected… We are all the same and no one’s pain is better or more real than someone else’s. Despite this, we seem to perceive and put value on different humans differently.’
Society’s negligence of women’s health conditions is not only symptomatic of a disregard for the complexity of women’s bodies (e.g. treating them in research as smaller men) but also of a denial and rejection of the woman as the individual. Her spirit and her existence are denied of something that is usually granted to her male equivalent. For Rebekah, this is why ‘women’s health conditions are just accepted.’ She tells me, ‘I am bloated because that is my existence. It is an existence that that affects my relationships, my sex life, the clothes I wear… everything. It affects your sense of being a woman and your identity. This is an existence that needs to be taken seriously.’
The existence of women has been too long neglected. All fields must act with a sense of urgency. For innovators, engineers, designers, anthropologists, etc., a belief in the humanness of the woman, a faith in her worth, and in the dignity of her existence, are important and virtuous premises. These beliefs demand that woman be taken seriously, her existence studied, and that new possibilities for her being are created. These virtuous premises generate virtuous cycles – the belief that woman has worth leads us to study her experiences and understand her problems, which then allows us to find solutions and increase the number of options for her to be and to exist with dignity and beauty in this world.
Acts of pursuing
The experience of having endometriosis is dark, depressing and frustrating. While sitting on waiting lists, there are ‘no resources, no help provided whatsoever from the NHS, not even advice on diet’. For Rebekah, getting out of this dark place is an act of feminist self-empowerment. ‘It’s about not being afraid to be wanting more and asking for more… to create options for yourself and those around you,’ she tells me. The Future of Endometriosis conference itself was an effort to surround herself with solution-providers and options. ‘I wasn’t looking to do this event. I was looking to attend an event like this. An event that would bring together patient communities, allies, and people who want to support.’
It’s about not being afraid to be wanting more and asking for more… to create options for yourself and those around you.
For those who have historically been denied options, responsibilising language and the hope of individual action can be empowering. Rebekah tells her community to ‘go and help the nurse in front of you, go in with your symptom tracker and put yourself in the driving seat… whether it’s in a doctor’s office or a promotion, ask for what you want and do what you want.’ The pursuit of a diagnosis is likened to the pursuit of an office promotion– something that a woman can be empowered to do, despite the odds stacked against her.
Hope, empowerment and dignity are synonymous in the many acts of ‘pursuing’– whether it is pursuing a diagnosis or pursuing solutions, knowledge and a community. And it is not just patients but researchers, entrepreneurs and investors who are embroiled in hopeful and empowered pursuit. They pursue their own kinds of possibilities, such as the possibility of a return on investment and the possibility of a scientific breakthrough.
Observing the increasing entanglements of patient groups, medical communities and the private sector, one might reasonably raise concerns over issues of access, equity and diminishing state responsibility. Equally, questions of power and expertise sitting at the intersection of patient advocacy and medical practice might be explored. Whilst these are not new questions, the lens of beauty, dignity and options, and the metaphor of the ‘pursuit’ can help us examine the evolving conversation.