Credits: Sam Williams, Pixabay
This submission has been posted as part of a blog series that seeks to profile the newly created NNHRR Working Group on Economic, Social, and Cultural Rights blog series, its vision and plans, and to highlight the expertise of its members, showcasing their research and/or contributions to ESCR.
By: Erica Selznick, Paula Blancarte Jaber, Andrea Ford, and Inga T. Winkler
Human rights advocates have long pointed out that the intersection of gender and health is characterised by significant neglect and the structural disregard of women’s right to health. Nowhere is this more apparent than in the context of endometriosis.
Endometriosis is a common chronic inflammatory condition where tissue similar to the lining of the uterus, known as the endometrium, grows outside of the uterus. This often causes significant pelvic pain, period cramps, painful sex, chronic fatigue, and infertility. The World Health Organisation estimates that endometriosis affects 1 in 10 women of reproductive age. Yet, endometriosis continues to be under researched, underfunded, and underdiagnosed.
Neglect and Stigma
It often takes 7 to 10 years to get an endometriosis diagnosis (and a recent report from Endometriosis UK suggests this is increasing!). Many people living with endometriosis endure long and challenging journeys through the healthcare system. For instance, doctors often dismiss symptoms as nothing more than period pains and label people who seek care as hysterical or overreacting. “It’s all in your head” or “this is normal” are phrases people who live with endometriosis have heard far too often.
Misconceptions around endometriosis abound. It is related to the menstrual cycle (as symptoms often flare up during menstruation), but it’s a whole-body disease. It doesn’t only affect cis women of reproductive age, but can continue to affect people post-menopause and impact infants and trans and cis men. As public discourse commonly links endometriosis to menstruation, endometriosis is highly gendered. Many who experience endometriosis symptoms face slighting, gaslighting, and stigmatisation when advocating for recognition and treatment. This jeopardises women’s right to health, and even more so the rights of those who are not cis women of reproductive age.
Additionally, the treatment options available for endometriosis are commonly ineffective and inadequate, providing only temporary relief; to this day, there is no definitive cure for endometriosis. Even with surgery, treatment is not permanent, and symptoms can return. The gaps in diagnosis and treatment can only be understood within the long-standing neglect of women’s health in funding, research, and care. This neglect and dismissal of the experience of many people who live with endometriosis can create a sense of abandonment by the medical system and undermine the right to health.
Self-Management of the Disease as Empowerment or Further Abandonment?
“Self-management” has become a common phrase to describe people taking an active role in their own health care through changes in their daily lives. This can be a welcome way of feeling “empowered” to do something about the condition. But it can also highlight how inadequate medical diagnosis and treatment are. People must not be forced into self-management for lack of other options. Therefore, any promotion of self-management strategies must be well considered to ensure that people don’t experience it as further abandonment.
The right to health goes beyond the right to medical care. It extends to the underlying determinants of health, including the social and economic environment. The notion of human rights stresses that states are responsible for the realisation. This means that even self-management requires support through communities and policies – without this, changing diets or work patterns is impossible for many people to accomplish. If there is no adequate institutional and social support, empowerment can easily slip into abandonment. As part of their obligations under the right to health, states must create the enabling environment for self-management.
Self-management strategies for people living with endometriosis can include experimenting with different diets, exercise, heat therapy, and alternative therapies for pain relief. It can involve changing how, where, and when someone socialises, works, and rests. These strategies require a lot of trial and error to find what works best, if at all. This can be both costly and time-consuming, creating a very isolating experience as individuals are left to their own devices while also facing stigmatisation and dismissal in medical spaces, workplaces, and social settings.
The medical system increasingly acknowledges the role of self-management strategies and seeks to develop a better understanding of what works for whom under which circumstances. This acknowledges that many people living with endometriosis are experts on their own disease. But it is equally important to investigate what policies and social supports are needed to enable people to make such changes. If people can’t afford different food, dietary recommendations will be inaccessible and create even more stress. If people are afraid of losing their jobs due to requests for different working patterns, they won’t make those requests (even if menstrual leave policies are in place). If people already feel shame and exhaustion that impacts their social life, the risk of being ostracised from their communities because they don’t share food or drink can contribute to depression. In many instances, the fear and risk of stigmatisation and discrimination might be (even) more severe than the pain.
Self-management is often talked about in terms of ‘empowerment’ through informed choices and self-reliance. We are suspicious of these narratives because they make it seem as though patients are isolated individuals who all have access to informational and financial resources. Narratives of self-management can hide the ways in which we are reliant on and responsible for one another in a functioning society. Because of the cultural emphasis placed on having personal agency, self-management can be helpful in conveying a sense of empowerment and choice, but this must not lead to making individuals solely responsible (and blaming them if they fail with self-management due to a lack of structural support).
Turning Barriers into Enablers
This is where the EUmetriosis project comes in. It is a multi-country, five-year EU Horizon-funded project that aims to address unmet needs related to endometriosis and advance patient care. It combines social research, clinical research, and patient and public involvement. As the social science team, we are focusing on developing a deeper understanding of the structural barriers people living with endometriosis face in adopting self-management strategies. Through this, we will develop recommendations to create an enabling environment where self-management strategies are accessible and helpful to diverse groups of people, while being paired with excellent medical care and social policies.
To understand what turns barriers into enablers, we are guided by the human rights principles of participation, substantive equality, and accountability. Recognising the need for interdisciplinary approaches and participatory research, patient advocacy groups have been involved in the design and implementation of the project, meaning that the whole project will be accountable to the experiences of people living with endometriosis. The patient community motto, “no research about us without us,” is embedded at the outset.
As the social science team, we will gather insights from people living with endometriosis, highlight their voices, and feed them into decision-making processes. We will examine how relevant policies across Europe address, or fail to address, structural barriers across different socioeconomic realities. Above and beyond the practicalities of implementation, we are curious to discover how people perceive self-management strategies – do they find that managing their own health is a form of empowerment and autonomy, or continued abandonment and neglect by medical and social systems?
In line with the principles of substantive equality and intersectionality, we will pay special attention to diverse identities, needs, and social positions, given the different socio-economic realities people face, strategies that enable self-management cannot be one-size-fits-all. For instance, flexible working arrangements might support someone in an office job but be of no use to someone who works shifts as a healthcare worker or in retail. An anti-inflammatory diet can have cost implications that affect people differently depending on their available income.
We don’t mean to dismiss strategies for self-management. They provide relief and hope to many people living with endometriosis. But in order to have a meaningful impact on people’s lives, we need to gain a better understanding of the structural barriers people face. And we need accountable institutions that acknowledge these barriers and turn them into enablers. This requires policies, financing, better evidence, accessible health care providers, supportive social structures, and so much more.
Conclusion
The severe lack of endometriosis funding and research, the frequent dismissal of symptoms, the stigmatisation, the inadequate dissemination of information to patients, and the extremely limited diagnostic and treatment options all exemplify a disregard for the fundamental human right to health.
Self-management strategies may well offer both immediate and, in some cases, long-term benefits for those living with endometriosis. However, it is crucial that this does not relieve researchers, policymakers and health professionals of the responsibility of developing permanent and more comprehensive solutions for those affected by the condition. Structurally, we must not leave individuals with the sole responsibility and burden of their own healthcare as a direct effect of a neglectful healthcare system.
Endometriosis is a whole-body disease that requires a whole-society response.
Bio:
Erica Selznick is a PhD Candidate in the Law Group at Wageningen University with a research focus on public health and sexual and reproductive health. Her interests lie in comprehensive sexuality education, informed decision making, patient empowerment, and incorporating lived experiences to promote realistic approaches to sexual and reproductive health care.
Paula Blancarte Jaber is a medical doctor with a degree from La Salle University in Mexico and an MSc in Global Health and Development from UCL, and has clinical experience across health systems internationally. Her global health research focuses on patient-centred outcomes, advocacy, and women's and reproductive health. She has collaborated with NGOs on healthcare provision, health promotion, and medical knowledge dissemination. Her interests include sexual and reproductive health, social determinants of health, global health policy, and patient engagement in healthcare decision-making.
Andrea Ford is a Wellcome Trust Research Fellow in Social Sciences and Humanities at the Centre for Biomedicine, Self and Society at the University of Edinburgh School of Medicine. Her research explores childbearing, menstruation, endometriosis, and hormones, more broadly investigating how ideas about gender, bodies, knowledge, nature, and technology shape the culture surrounding medicine and reproduction. Her books include Near Birth: Contested Values and the Work of Doulas with University of California Press, Hormonal Theory: A Rebellious Glossary with Bloomsbury, and Inflamed: A Cultural History of Endometriosis (in preparation).
Inga Winkler is an Associate Professor in Human Rights at Wageningen University with a research focus on public health and gender justice. She is the co-chair of the University Seminar on Menstruation & Society at Columbia University and co-editor of the Palgrave Handbook of Critical Menstruation Studies.