SOS: Save Our Spoons – Living and Learning with an Invisible Dis/ability – Part 1

Alice Anderson & Carol A. Taylor, Department of Education, University of Bath

Introduction

We met when Alice was undertaking her final year undergraduate dissertation and Carol was supervisor, a relationship which presumes a firm pedagogic hierarchy: Alice – novice; Carol – expert. During our second meeting, we discovered a shared experience which disturbed this hierarchy. Carol had had Covid and then Long Covid (LC) and was on an extended phased return to work; Alice has had Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome (CFS) for almost 11 years, and had dealt with it through school, A Levels and degree study.

We are still in the very early days of knowing what Covid and Long Covid ‘are’ and how to manage the symptoms, of which there are over 100. Most of what doctors, occupational therapists and physiotherapists know has been gleaned from many years of working with ME/CFS sufferers, and from the lived experiences and testimonies of those with this condition. In this context, Alice was the knower, the expert, and Carol the novice. This recasting of roles put us on a more equal footing regarding knowledge and expertise, and changed the dynamic of the next six months in which we worked and learned together. This blog is our attempt to condense some insights from our shared conversations and individual journeys of living and learning with an invisible dis/ability. Our hope is to shed light on these invisible conditions and raise awareness of how educational institutions might better support those with ME/CFS and LC.

Long Covid and ME/CFS: Numbers and condition

Carol: LC for me includes fatigue, exhaustion, physical aches, brain fog, headaches, breathlessness, dizziness, post exertional malaise (PEM), and temperature fluctuations.

Alice: ME/CFS for me is having physical and mental fatigue/exhaustion, nausea, flu-like symptoms, sore-throat, PEM, dizziness, sensitivities (food and noise), unrefreshing and disturbed sleep and brain fog. It’s like having constant flu, whilst being drunk and hungover.

According to the ME Association, about 265,000 in the UK have ME/CFS: ‘it is a life-changing and indiscriminate neurological condition that affects adults and children from all socio-economic and ethnic backgrounds. It can lead to long-term disability and a lower quality of life than multiple sclerosis or cancer. ME/CFS has been identified as a major cause of absence from school and work.

Long Covid affects people in similar ways. As of 1^st June 2020, the ONS estimates that up to two million people in the UK are living with Long Covid, of which 376,000 people have had LC for more than two years. The support group, Long Covid Kids, reports that there are currently 119,000 children and young people living with Long Covid. Dr Nathalie MacDermott, a specialist in paediatric infectious disease at King’s College London, warns that failing to deal with Long Covid is not only blighting people’s lives, but it is harming children’s education and, long term, will undermine the economy.

A daily struggle

Behind each ME/CFS and Long Covid statistic there is an individual story of daily struggle. This is what our Blog focuses on.

Alice: I first fell ill with ME the summer before starting my GCSE’s. Not only was I at a pivotal stage in my education, and facing the usual challenges of adolescence, I also had to learn about and navigate a life-changing condition which I’d never heard of before. I was mostly absent during my GCSE studies as I struggled to perform basic daily life activities. Once diagnosed, I was advised by the specialist occupational therapist to drop several subjects to help cope with the workload, significantly restrict GCSE revision and conduct a phased return to school starting with 2 hrs per day, which I struggled to maintain. When I did attend school, I would often feel very unwell, unable to learn, and struggled to engage with lessons. I was existing rather than living.

This channel 5 news report shows the devastating effect of one young boy with Long Covid.

Carol: As a senior academic my daily work entails long hours, extensive multi-tasking, and many meetings. I am also departmental Director of Research. I love my job: the stress is an adrenaline rush. I was highly capable, competent and productive, in navigating the pressures and demands of my job: research and teaching, presenting at international conferences, and working with many different colleagues on writing and research projects in South Africa, Finland, Australia, the US, Europe and UK. In October 2021, Covid hit and then Long Covid took me down. In the first months, my big daily achievements were getting up, getting ready, walking the dog around the block, and watching the clouds pass by. Some days I couldn’t even do that. Getting through a day was an achievement.

What can we do to manage these conditions and symptoms? How can educational institutions support those with ME/CFS better? We discuss these questions in parts two and three of our Blog.