Ten years ago, I had just graduated and landed myself a job in the beating heart of a London advertising agency. It had been a long-held dream of mine. But that same year, I had also just begun a lifelong career with endometriosis.
Fast forward to four years, two invasive surgeries and more days off than my HR team could process, I was doing everything in my power to keep myself from drowning, and ultimately losing my dream. Whilst colleagues were off hurdling over their next project or running the London Marathon, the only race I was in was the one straight to menopause (a treatment option to surpress endometriosis).
I remember it so clearly, the bomb going off in my pelvis, the agony as my uber driver rushed me to A&E, and then, the email from my boss warning me I had left without giving a handover, just as the doctor glorified the words “induced menopause” at my bedside. I wanted out of the pain so badly, I took the hot flashes, the night sweats, the brain fog, all in a bid to try and function at work again. Even with two fans at my desk, that did not last long.
Months later, I got my own chance at hurdling though, over another A&E entrance. I had been working with agonising pelvic pain, which I was used to. I had been working with a stomach that looked six months pregnant, which I was also used to. What I was not used to, was having my bowel stop functioning. There I was one hour with the specialist being told I would need yet another surgery, and a colostomy bag, and the next hour pitching for new business. Working with endometriosis is pretty “crap”, excuse the pun.
What became immediately obvious to me, was that I could not continue. Symptoms were clashing with work, but work was also exacerbating my symptoms. When deciding to go part-time did not make things better, I quit. I chose flexibility and financial uncertainty so I could try, at least, to have some sort of a life.
The Disabling Effect of Endometriosis at Work
Endometriosis negatively affects millions of women (1) in the workforce – in terms of their jobs, careers and economic prospects – but it can also present costs for their employer and the economy more generally. Of the estimated 200 million women with endometriosis of working age worldwide, many are currently experiencing or may come to experience a substantial impact on their physical health and mental wellbeing. Additionally, they often face disabling barriers in the workplace; that is, structures and cultures that do not reasonably accommodate people who are less able bodied than the standard worker (i.e. a non-menstruating healthy body). As such, the ability to work productively or work at all can often be limited.
In fact, workplace studies show that the condition is associated with greater levels of absenteeism and presenteeism. Symptoms, including debilitating pelvic pain and extreme fatigue, can cause an average loss of 6.3 – 10.8 work hours per week. However, loss of confidence and depression also intrude into working life. Needless to say, all of this can create an inability to work long hours or the need for sick leave with significant financial consequences. Annually in the UK, work productivity loss is estimated to be £5,757.72 per employed woman with endometriosis and £8.2 billion economically.
Alongside symptoms and the financial burden of the disease, sufferers can face the socially disabling effects of a chronic and invisible illness at work. The stigma and low awareness associated with endometriosis can create a predicament about disclosing symptoms, which may drive accommodations but on the other hand can fuel workplace discrimination. Typically, long delays in diagnosis exacerbate the latter because a lack of official medical evidence can result in a medical issue being treated as a performance management issue. This absence of understanding and acknowledgement from employers’ results in limited access to the appropriate support that may place, and is placing, jobs and careers in jeopardy.
However, a growing obligation persists for organisations to evolve with the needs of people with invisible conditions in the workplace, especially if they are to steer clear from the court room. Many sufferers with endometriosis will meet the criteria of a disabled person under the Equality Act 2010 as the condition is both debilitating and substantially affects their everyday life. In 2017, an employment tribunal set a precedent when it ruled that a former nurse was unfairly dismissed because her employer failed to make reasonable adjustments in its absence policy for her disability (endometriosis). Growing evidence linking endometriosis and obstructed careers sees this trend as set to continue.
Although job loss is most common in physically demanding roles such as the armed services, research has shown sufferers are less likely to work in their desired profession, are falling into unemployment, involuntarily pushed into part-time work or choosing to become self-employed whether the support or motivation is present or not. In a study of 7,025 women from 52 countries, 41% had become unemployed because of endometriosis. Disturbingly, research carried out in 1998 produced similar results and yet little has evolved in terms of support in the labour market.
In light of the evidence, it is safe to conclude policy changes need to be implemented and working life remodelled to: prevent people from suffering in silence in the workplace, at the detriment to their health and wellbeing; avert capable talent from leaving the workforce; reduce the growing financial burden at an individual, organisational and societal level; and alleviate the possibility for organisations to be taken to employment tribunals.
Alleviating the Disabling Effects of Working with Endometriosis
Limited advice exists for employers and employees working with endometriosis. One proposed solution is menstrual workplace policy. This policy could provide people with not only endometriosis, but also painful periods and other menstrual related conditions such as PCOS and Adenomyosis, with flexible and reasonable adjustments for a healthier working environment. Variations of such policies include the following.
Permission for employees, when symptoms are at their worst, to: Work from home; Reduce hours; Re-allocate tasks; Take a day’s paid leave. And guidance for employers to: Train managers about invisible menstrual conditions like endometriosis; Develop an organisational culture where employees feel supported to discuss individual needs; Tailor absence policies to recognise endometriosis so sick days are not detrimental to a person’s career; Adjust working environments to better support the management of symptoms at work e.g. ensuring toilets are well equipped with adequate menstrual products for heavy bleeding.
Supporting women in this way speaks to key public policy issues – including health and well-being, gender equality and workplace inclusion. Some organisations are already learning the value of supporting menstrual-related health in the workplace. In a study of the Bristol firm CoExist, accommodations under menstrual policy made working life much more manageable for women with endometriosis. Progressive menstrual policy has been introduced by other organisations in Sweden, Amsterdam and Australia, and they are reporting greater productivity and happier working environments.
Strides to accommodate women’s health is also present outside of office working environments. Chelsea recently became the first women’s football club to introduce a training programme around players’ menstrual cycles in an attempt to enhance performance and reduce injuries. Equally, some opera houses have a long tradition of offering female singers paid menstrual leave due to premenstrual vocal syndrome; a phase of the cycle where the vocal chords can be affected by a loss of vocal power, range and harmonics. Altogether, the greater menstrual awareness and understanding amongst employers and colleagues leads to significant shifts in attitudes. Workplace flexibility and support helps people to remain in full-time employment, as well as their desired professions which they have often trained and worked so hard for.
Workplace menstrual policies should be as commonplace as maternity policies. Whereas maternity affects a proportion of a woman’s life, endometriosis can, and often does, affect the entirety of a person’s career. And, yet, these policies are very rare. A new standard is required to help keep people in work, reduce the gender pay and pension gaps, erase some of the taboo surrounding endometriosis and improve productivity. Absence of such a policy means the path to finding support is long and unnecessarily difficult.
Currently, I am undertaking a PhD on the lived experience of endometriosis in the workplace and the influence of menstrual policy. Much more research and campaigns are needed in this area to raise awareness of endometriosis as a workplace issue. This is crucial, not only to improve people’s quality of life and professional trajectories, but also to address the political, economic, and social issues regarding the disabling nature of endometriosis. Ideally, endometriosis should no longer be seen as a problem to be privately managed and left “as an obstacle for individuals to overcome”.
Women is used as a placeholder here because some transgender men and gender non-conforming people also live with endometriosis.
Victoria Williams is a doctoral student at The Open University. Her research focuses on the experience of endometriosis in the workplace and the influence of menstrual policy upon those experiences.
Image Credit: Joseph Chan, Unsplash