Dr Megan C Evans, Public Service Research Group, School of Business, UNSW Canberra; and Dr Claudia Benham, School of Earth and Environmental Sciences, The University of Queensland

Between us, we have a lot of experience in being sick. This can be a daunting admission to make while working in research, a profession that tends to valorise long hours and productivity (not necessarily in relationship to one another). It can also be a tricky issue to navigate in a society that tends to view illness as a short-term phenomenon. Even the peasant who turned into a newt in Monty Python and the Holy Grail eventually got better. But not all illnesses have a discrete start and endpoint, or a cure. 

Chronic illnesses (or conditions) are characterised by their long-lasting effects and typically persist throughout a person’s life (Australian Institute of Health and Welfare 2020). They are also more common than you might think. In 2018, the ABS found that nearly half of all Australians have 1 or more of 10 selected chronic conditions, including mental illnesses, asthma, cancer, arthritis and diabetes. A subset of these are autoimmune conditions, like Crohn’s disease, when a person’s immune system mistakenly attacks their own body. About 5% of Australians live with an autoimmune disease. 

We are two of those people. We share some of our experiences here partly because having invisible illness can be extremely lonely, and frustrating – particularly for young women (Hutchison 2018; Sohn 2021) – and anything we can do to help others feel less alone is worthwhile. We also think it’s important to explain how people with chronic illness, like other people with disabilities (noting that not everyone with chronic illness identifies as such), make daily adjustments and compromises to manage their conditions alongside work, family responsibilities and other life commitments. 

For us, these adjustments have included: 

• Declining speaking events late at night, or that require travel
• Emergency napping under the desk at work
• Working from home to reduce fatigue (and make emergency napping easier!)
• During illness flares, being unable to leave the house or get out of bed for days or weeks
• Declining or ending opportunities and projects early due to illness
• Spending a lot of time and money going to medical appointments.

All of this is inseparable from the context in which we work. Research is a stressful career, and conservation work is a special kind of stressful. Crisis and urgency are the backdrop of everything we do. Stress is usually not the sole cause of chronic illnesses, but it can aggravate them (Acabchuk et al. 2017). Many researchers and environmental practitioners suffer from burnout at some point in their careers. In their book Burnout, twin academics Emily and Amelia Nagoski (2019) write that “For some of us, it’s been so long since we listened to our bodies, we hardly know how to start understanding what they’re trying to tell us, much less how to trust and believe what they’re saying”. 

Most of us know that the body and mind are inextricably linked, but the extent to which the body stores stress and trauma is perhaps not as widely recognised. As Bessel van der Kolk explained in his groundbreaking book, our conscious minds can become quite adept at ignoring stress – our always on call, always busy lives seem to demand it. But the body will continue to keep the score, and eventually, we must learn to listen to it (van der Kolk 2015). 

The good news is that some of the strategies used to cope with chronic illness are helpful in managing the stress and burnout that is particular to our profession (Randall 2009). A lot of these strategies are about ‘slow productivity’, rest and pacing. Dr Kate Litterer writes that ‘slow productivity’ includes valuing the behind-the-scenes and ‘invisible’ labour of preparation, reading and thinking as real work. Mountz et al. (2015) note that slowing down is key to sustainable, thoughtful and impactful scholarship – the kind of scholarship that is at the heart of academic practice and contributions. In a society that worships productivity, it can be helpful to see rest as productive (but also, valuable in its own right).

Of course, there is a limit to what individuals can do if the culture of research doesn’t make space for chronic illness, disability, or caring responsibilities. There is no one size fits all approach, but we do know that having flexible, supportive workplaces in which colleagues with illness or caring responsibilities are valued and supported, is critically important. The COVID-19 pandemic has demonstrated that we can transition to flexible working arrangements almost instantly, with no demonstrable drop in productivity (in fact, Williamson and Colley (2022) found that working from home leads to greater productivity, although workers and managers perceived this differently). Flexible work, and a greater focus on health and wellbeing during the COVID-19 pandemic, provides opportunities for systemic change in academia, as elsewhere. 

Other things that institutions and individuals can do to better support colleagues with chronic illness and disability include: 

• Not scheduling meetings or other commitments very early or very late
• Being aware that chronic illnesses are common and often impose ‘invisible’ limitations
• Contributing to a supportive workplace culture, where work-life balance is openly discussed and valued
• Paid leave and flexible working arrangements that support researchers who experience chronic illness or disability, or who have caring responsibilities.

None of these things will take away the uncertainty and difficulty of chronic illness, but they might just help make research a better place to work, for everyone.

Resources and references

Acabchuk RL, Kamath J, Salamone JD, Johnson BT. 2017. Stress and chronic illness: The inflammatory pathway. Social Science & Medicine 185:166–170.

Australian Institute of Health and Welfare. 2020. Chronic conditions and multimorbidity. Page Australia’s Health 2020. Available from https://www.aihw.gov.au/reports/australias-health/chronic-conditions-and-multimorbidity (accessed May 12, 2022).

Hutchison A. 2018. “I don’t have the spoons for that …”: the views and experiences of younger ACT women (aged 18 to 50 years) about accessing supports and services for chronic disease. Women’s Centre for Health Matters, Canberra. Available from https://www.womenshealthmatters.org.au/wp-content/uploads/2020/10/I-dont-have-the-spoons-for-that-FINAL.pdf. 

Mountz A et al. 2015. For Slow Scholarship: A Feminist Politics of Resistance through Collective Action in the Neoliberal University. ACME: An International Journal for Critical Geographies 14:1235–1259.

Randall R. 2009. Loss and Climate Change: The Cost of Parallel Narratives. Ecopsychology 1:118–129. Mary Ann Liebert, Inc., publishers.

Sohn E. 2021. Why autoimmunity is most common in women. Nature 595:S51–S53.

van der Kolk B. 2015. The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma. Penguin Books, New York, NY.

Williamson S, Colley L. 2022. Working during the Pandemic: The future of work is hybrid‬. Page 21. Report number 2. UNSW Canberra Public Service Research Group and CQUniversity, Canberra. Available from https://www.unsw.adfa.edu.au/sites/default/files/documents/Working_during_the_pandemic_the_future_of_work_is_hybrid_Feb_2022.pdf (accessed May 12, 2022).

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