‘People just don’t understand’: how endometriosis affects women’s working lives

March 2021 marks Endometriosis Awareness Month – a month where campaigners strive to raise awareness of this chronic gynaecological condition and to improve care, treatment and support. (Find out more about the condition here.) Endometriosis can have a devastating effect on so many aspects of women’s lives, but one particular issue which warrants more attention in research, policy and improving practice is the impact of endometriosis on women’s working lives. Endometriosis can mean more time off work, and reduced productivity while at work (see Culley et al, 2013 for an overview; also Soliman et al, 2017). A large-scale multicentre study revealed the average annual cost of productivity loss per woman with endometriosis to be around £5,500 in the UK. These figures make a powerful business case for addressing endometriosis in the workplace. But alongside this it is important not to lose sight of the moral case, to take notice of women’s experiences, and to recognise the costs not just to the economy but to women’s lives.

Our jobs, careers and experiences in the workplace can shape our confidence, identify and self-worth. Not being able to follow our desired career or perform to the best of our ability, and feeling misunderstood, unsupported and even discriminated against, can have profound effects, as some of the women we spoke to in the ENDOPART study told us. This study examined the impact of endometriosis on couples: 22 women and their male partners took part in separate, in-depth interviews and told us how endometriosis affects their relationships and everyday lives. Find out more about the study at www.dmu.ac.uk/endopartreport

Pain and fatigue, as well drowsiness from medication to treat the symptoms of endometriosis, can make work extremely difficult for some women. Jobs which involve a lot of moving and physical work may be especially challenging. While some women take time off sick, some we spoke to also described enduring work – ‘keeping going’ despite feeling terribly unwell. While this illustrates their tenacity and dedication, it also illustrates a concern that their symptoms may not be seen as a valid reason for time off, for which they won’t be penalised:

‘I’ve always made it in to work but I think that’s more because I’m just concerned about how it might impact my career if I was suddenly taking off two days every month … there are times when just a mixture of the pain and painkillers … I haven’t managed to achieve very much while I’ve been at work, I’ve been there physically at my desk and I’ve just been finding things to do that aren’t too mentally challenging.’ 

Being able to work flexibly was therefore very important. Some women achieved this by becoming self-employed, changing jobs and careers, or changing working hours. For some, this newfound flexibility was critical in enabling them to balance work demands alongside their physical and mental wellbeing.

‘I used to have Mondays off and now I have Wednesdays off.  So I work two days, one day off, work two days, two days off, and I’m able to pace myself much better … It’s only been five weeks and I can’t get over how much better I feel.’

But women also spoke of a lack of support from employers and sometimes colleagues, often underpinned by a lack of awareness of the condition. Some women experienced poor treatment, unsupportive managers, a lack of reasonable adjustments, and feeling ‘forced out’.

‘I could like list the amount of jobs I’ve lost because of, it because people just don’t understand.’

Photo by Andrea Piacquadio on Pexels.com

It is well known that many women wait several years for a diagnosis of endometriosis – and not having a medical label for their condition adds a significant additional hurdle to accessing support and understanding.

‘Period pain is not taken seriously or considered a legitimate cause for sick leave by many. For that reason, I have always hidden how much pain I’m in at work and avoided taking time off even when I feel really unwell.’

Several felt that their career had not progressed as it may have done were it not for the endometriosis. 

‘I don’t feel I am where I should be because of the endometriosis.’

‘I think it’s probably limited the amount of, my capacity to work extra hours … so my career progression hasn’t been the same as my peers.’

Amidst these negative experiences, women also spoke of supportive bosses, understanding colleagues, support from occupational health teams, and adjustments to sick leave allowances based on the protection within equalities legislation. Overall women found that navigating work was a delicate balancing act: women were acutely aware of their own ‘good’ and ‘bad’ time across a day, a week, a month – and scheduled their medication, work hours and tasks accordingly. Though the losses some women felt after having to leave jobs and careers were profound.  

These experiences are echoed by other research which reports women with endometriosis to have lower salaries and lower salary growth than their peers (Estes et al, 2020), and to be more likely to be unemployed (Facchin et al, 2019). Endometriosis can affect women’s career ‘choices’ and career paths, leaving them often unable to work in their desired position (Sperschneider et al, 2019). A recent All Party Parliamentary Group (APPG) on Endometriosis Inquiry found that of over 9000 respondents, 38% were concerned about losing their job, and 35% had a reduced income due to endometriosis.

So, what can be done? The stories we heard from women shows evidence of some good practice by employers – and there are opportunities for this good practice to grow. Endometriosis UK has set up the Endometriosis Friendly Employer scheme to enable employers to improve support by working towards the principles of the scheme, which include the provision of flexible working, tackling stigma, raising awareness and appointing endometriosis champions. Employers receive information, support and resources to help them on their journey. You can find out more about this here. Women experiencing difficulties may find the Endometriosis UK publication ‘Endometriosis in the Workplace’ useful to share with their employers. In addition, Endometriosis UK are hosting a panel discussion on this topic on Thursday 11 March at 12 noon – registration details can be found here.

As awareness and understanding of endometriosis continues to grow, it is vital this finds its way into a greater number of workplaces, policies and positively shapes the attitudes of employers and co-workers. As the APPG on Endometriosis argues:

‘those whose lives are significantly affected should be afforded the support they need to thrive in the workplace – as with any other medical condition.’

By Caroline Law

References

APPG on Endometriosis 2020: https://endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20APPG%20Report%20Oct%202020.pdf

Culley et al 2013: https://academic.oup.com/humupd/article/19/6/625/839568

Estes et al 2020: https://link.springer.com/article/10.1007/s12325-020-01280-7

Facchin et al 2019: https://www.karger.com/Article/Abstract/494254

Simoens et al 2012: https://academic.oup.com/humrep/article/27/5/1292/700268?login=true

Soliman et al 2017: https://www.jmcp.org/doi/full/10.18553/jmcp.2017.23.7.745

Sperschneider et al 2019: https://bmjopen.bmj.com/content/9/1/e019570.abstract

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