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Navigating chronic illness in academia: An early career perspective

  • 14 November 2022

By Rebecca Williams 

Rebecca Williams is a Lecturer in Environmental Law at Edinburgh Napier University. Previously she was a Teaching Fellow and the Interim Director of the Strathclyde Centre for Environmental Law and Governance at the University of Strathclyde. Her research focuses on the intersection of environmental and agricultural law, and particularly climate change. This blog is part of a series HEPI is running with the British Academy on the changing face of academia. 

In a profession plagued by chronic burnout, sometimes I wonder how I find my motivation and success as an early career researcher (ECR) with multiple chronic health issues. With administrative, teaching and research pressures mounting in academia generally, large proportions of academics report feeling overworked and emotionally drained. At the same time awareness is increasing of chronic illness and its impacts on individuals perhaps due to increasing numbers of Long-Covid cases, or even recent public attacks on chronic illness communities in the media. The proportion of staff in universities declaring health conditions or impairments sat at around 5.1% in 2020/21. However, 1 in 5 of working age adults in the UK and around 15.2% of undergraduates have a known disability. Considering these statistics, is there an under-representation of disabilities, chronic conditions, invisible illnesses and neurodiversity amongst academic staff? Overall, we expect more of academia in terms of their humaneness and awareness of diversity, such as disabilities – but how well do these worlds merge? 

I have endometriosis, an incurable condition that causes chronic pelvic pain, digestive issues and other symptoms such as fatigue and infertility. Like many others with endometriosis, I have a number of co-morbidities, including Postural Orthostatic Tachycardia Syndrome (that causes fainting, dizziness, and dysregulation of the autonomic body systems) and other conditions such as vulvodynia and chronic bladder inflammation. Those who know me in a personal capacity know I am very liberal in discussing taboo health topics. However, work is somewhere I am more reserved whether this be due to stigma or my own fears of surviving in the academia world as an ECR with these conditions. In this post I hope to share some of my experiences of navigating chronic illness in academia, and some ideas on how universities can help to support researchers in similar situations.

Career Progression

As an ECR, career progression is a massive concern. Managing your health is like another part-time job when you have chronic illness. You have weekly medical appointments to attend and need to carefully prioritise your workload to avoid entire days being lost to fatigue or pain. Even then, you just cannot always get the same amount of work done as colleagues who are able to pull all-nighters or longer workdays without major health repercussions. Alongside this, evaluations for promotion and reviews in the academic workplace are usually objective and can be affected by prejudices associated with stigmatised illness. ECRs are already on the backfoot in relation to job security, and the higher pressures and standards required of ECRs are only worsened when you have periods of poor health to navigate.

I regularly have not taken the sick days I have needed, only taking two days off reluctantly in a previous role after two 4am hospital visits over a weekend because I was nearing the end of a precarious contract. In the same time period, I experienced a period of chronic vulva pain which was likely attributed to my sensitivity to pelvic pain but heightened by the stress of job insecurity at the time. Since securing a permanent position, this pain has largely subsided and only flares in periods of high stress if properly medicated. Stress is often a flare trigger for those with chronic health issues, and concerns about job security can not only hinder career progression but also worsen symptoms to create the ultimate vicious cycle that can be detrimental during your early career. 

The Costs of Chronic Illness

Being an ECR often comes with a lot of costs – perhaps being viewed as the ‘lazy’ colleague for having to set your boundaries and not taking on yet another academic project for the sake of your health. Other personal costs can include feeling left out of work socialisation because of dietary restrictions or inaccessibility. The expectation of academics moving to a whole new city at the drop of a pin can take you away from your health support networks, whether it be health practitioners you have built up working relationships with or family. As an ECR, you are more likely than older colleagues to be single and not have the support of a long-term partner or spouse to help you out when you are having a bad symptom day. Add a cost-of-living crisis to the mix of specialist health appointments or special dietary products and medications and even financially you can often feel disadvantaged to those at a similar career stage.

As someone with largely invisible health problems that affect people who were assigned female at birth, there is an additional layer of stigma that make my health issues a taboo. Covering myself and ‘looking fine’ is often required when trying to fit into a cis male-dominated department and this is tiring. Lack of awareness about disabilities means those with disability or chronic illness can encounter a range of negative responses, whether it be frequent awkward social interactions or even prejudice about your competence at work. The lack of diversity in many university departments only compounds this more for those with a disability and another intersecting identity, such as race, gender or sexuality, only struggle more.

What Works and What Would Help

It is not all doom and gloom, and a big part of handling chronic ill-health in academia is to try and find the positives through the gloom. Academia is quite flexible in working (outside of teaching), so you can often squeeze in medical appointments or working-from-home where your department heads allow it. Moreover, you can always find your support networks. I have made some of my closest friends through those who shared details of their chronic health issues, often bonding around our ‘dodgy uteruses’ or ‘flare days’ – and this solidarity really does make you feel less alone. 

However, there is still so much more that can be done by universities to help academics with chronic illness (especially where provision for disabled students is often more expansive). Working-from-home culture becoming the norm during the pandemic has helped disabled academics be better included – whether that be in terms of hybrid provision of meetings, or because it is just less stigmatised to choose to work from home. However, on top of this, actively discouraging burnout and overworking culture will also help disabled ECRs keep pace and manage their conditions beyond reasonable accommodations required by the Equality Act (2010). My current Head of Subject actively tells me to put the laptop away after 6pm if he receives an email from me, and this sort of approach should be encouraged across the board. Improving job security for ECRs also will help mitigate the stress and expectations of ECRs which again will provide benefits beyond (but particularly for) disabled ECRs. 

The biggest fundamental change all people within higher education settings can make is de-stigmatising disability and chronic illness. Feeling like you cannot talk about your condition for fear of being viewed negatively is massively demoralising, especially when most disabled researchers overcome more barriers and are often more determined to achieve success than their able-bodied counterparts. Disabled academics are not a tick box for diversity and inclusion or a drain on resources or a department, they are great thinkers and sympathetic educators who deserve to be recognised as such. 

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