Why I finally stopped masking my chronic illness at work.

This year, I finally ‘came out’ as chronically ill.  

I’m currently, and hopefully, nearing the end of an extended period of sick leave. Pausing and stepping out of my work bubble taught me some important lessons about actually living with endometriosis rather than attempting to hide it behind work. 

Endometriosis is a debilitating condition estimated to affect 1 in 10 women. Awareness of the scale and impacts of the disease is steadily increasing.

Yet, length of diagnosis remains on average 8 years and women recount pervasive dismissal of their pain – “this is what periods are like”. Indeed, suggestions for period leave were met with derision and endometriosis is not covered within disability legislation. It is unsurprising that many women suffering chose to mask, drop out, or move to part time or more precarious work. The precarious, part time, and ‘always on’ nature of employment – as well as women remaining disproportionately carers – make managing self care in chronic ill health difficult.  Recent proposals that women should leave work to fill a Brexit care gap show how entrenched attitudes are to women just getting on with all forms of labour.

Moreover, images like that of the Duchess of Cambridge poised hours after birth, send the message that our bodies are not supposed to stop us. Adverts for sanitary towels may now show red instead of blue liquid, but the mantra is, get on with it. Yet, women’s reproductive heath costs – financially and in time as the MP Danielle Rowley highlighted, a crucial shattering of the silence on impact on work in a pervasively conservative domain.

For years, I masked my progressing endometriosis. 

I was a feminist maintaining a demanding career. A mother of two modelling a good work ethic. Lucky; first in her family to go to university and now a lecturer.  

Yet, this year, my body stopped functioning. I couldn’t keep pace. I was working all of the time, exhausted, missing out on my children’s lives. Barely speaking to my husband. I cried at my desk. On the street. In the toilets. 

In February, in an MRI, claustrophobic, listening to ‘hits of the 80s’, I knew things had to change. Staring at the scan of my fused organs showing ‘stage 4’ ‘severe’ endometriosis requiring intervention prompted me to visit my GP. 

She listened.

She told me to stop feeling guilty. She told me I needed time to think. She told me I needed to stop. I was not fit for work. 

The time and having someone listen has been a privilege. I am still in pain, but I have gained perspective, accepted support. Let people back in. 

Academic work may be work like no other – a passion, always on, a privilege. Yet higher education is a sector suffering a mental health crisis and existing patterns of gendered, raced, classed and ableist exclusions. I need to spend my limited energy where it counts.

What kept me silent for so long was a desire to represent a different kind of body – a first generation academic woman and mum. Yet, masking does this a disservice. 

As collective action around periods, menopause, endometriosis gains traction, bringing my own body and mind back into control has connected me to 1 in 10 others. I have to learn to work well, within my limits. Living with endometriosis, means living with it in view.    

Women masking until they burn out or drop out, does nothing but ensure the pay equality and pensions gap. From the relative privilege of a professional job with sick pay, it is my responsibility to use that privilege to speak out. To do the work that will really make a difference.