Before the Covid-19 pandemic, I went straight from redundancy and burnout to a full-time research masters, then embarked on a full-time PhD. I was regularly commuting between cities to have separate, quiet study space and returning home as my place of rest, as I’m neurodivergent and need the structure of separating studying and home life. 

Nevertheless, the burnout was lurking and around a year into the PhD, I decided I needed to go part-time. I scoured the funder and university policies, then referred to the sections on part-time study to help make my case. One supervisor questioned if I wanted to continue with the PhD. Without hesitation, I responded emphatically “yes”. Finding something difficult is not the same as not wanting or being unable to do it, and the easiest way is not always the best way. I had secured this opportunity to research the only topic I would have pursued, and I was not prepared to let it go.

Pandemic disruption #1

In early 2020, my supervisor mentioned likely upcoming governmental restrictions due to Covid-19 and fundamental changes to how researchers would be expected to work and study. I kept going into the office as long as I could, as I found home study impossible. Eventually, though, I had no choice. Although the government guidance permitted ‘essential research’, including doctoral research, the university forbade me (and most other students) from attending the university. As such, my only available option was to work from home.

The pandemic progressed and pandemonium ensued in the form of my upstairs neighbours generating noise, day and night, to the point that I was on edge, not knowing when the next ‘thud!’ would jangle my nerves or disrupt my sleep. My supervisors were fulfilling the institutional expectations of asking if I was okay and offering signposting. However, I was not okay and signposting added to the cognitive load without providing new or useful information. I was easily startled, sleep-deprived and could not concentrate. I was already trying very hard to meet even my basic living needs but was frustrated by the numerous blockages to improving my situation. I did not have the capacity or means to move home and the suggested mediation with the neighbours would not have reduced the neighbour noise. I hated my home. The only escape from the unpredictable, distressing noise was to go outdoors as much as permitted under the pandemic restrictions. However, going out involved being active. Consequently, I had nowhere to feel safe, relaxed and rested. I could only wait and hope for my circumstances to improve enough for me to resume my studies.

Combined with the technological problems preventing me from making progress remotely, I had to formally apply to interrupt my studies. I took the full 28 weeks available, then highlighted to the university the funder’s terms providing for a one month phased return after extended medical leave. 

Return attempt #1

I fought hard, self-advocating for reasonable adjustments, including the need to attend the office to be able to return to my PhD. The effort and the ‘disability admin’ involved in trying to secure what I needed drew on my limited energy and cognitive resources that I needed to use for my thesis. Though the office was quieter than home and I could access the necessary files efficiently to work on, I was still easily startled and distracted by small sounds and movements. 

However, soon after my return, I resumed a prolonged process of making my case for a quieter desk space. Although many PhD students enjoy working in a shared space, I argued that not being around other PhD students would give me the best chance to progress. This was not readily understood or responded to and I had to persist.

Managing ongoing COVID-19 Illness

Over two years and multiple infections into the Covid-19 pandemic, I had the COVID infection that did not resolve. The previous acute infections were straightforward, each taking a little longer to clear and for the fatigue to end. This time, I slept solidly for three days aside from struggling to reach the bathroom when I couldn’t postpone any longer. I worked hard against the cognitive impairment to remember to pick up a simple snack on the way back to bed, as I wouldn’t manage to get up again for many hours.

In addition, I couldn’t drive safely for three months due to the cognitive problems and the leg muscle fatigue from using the pedals, both of which still affect me sometimes. I certainly wasn’t able to use public transport and was isolated from my partner and other social connections. I was struggling to form spoken sentences, forgetting what I was saying as I started to speak and having difficulty with word finding. A further interruption to study was inevitable.

Pandemic disruption #2

I was aware that my university allowed for Covid-related absences from study. Nevertheless, I was unable to hold complex thoughts in my mind and this time I was unable to complete the form to apply for an interruption to studies on medical grounds. Now on my third Disability Advisor since joining the university, I benefited from his interest and willingness to assist me. He completed most sections of the form then, after I had added the last few details, he submitted it to the relevant administrative team.
I again had to self-advocate, insisting that marginalised researchers’ voices were valuable and that it was in the institution’s interests to allow me the chance to recover my health and retain my voice within academia as a disabled and multiply marginalised researcher.

Return attempt #2

My year of medical leave was up and, once again with a one month phased return, I had little choice but to make my final attempt at thesis completion. My cognition still was not all that it had been, which worried me a little. However, I thought that the effort to attempt to argue for a longer extension would far exceed the benefit of a few more months. I only hoped that my cognition would gradually improve to a more useful extent to enable me to complete the writing that was required.

Shortly after, I found a private Long Covid specialist who identified a once commonly used medication that could potentially improve my cognitive impairment. Fortunately, I did experience some cognitive benefit, accompanied by increased hope that I could make it through to submission.

Eternal revisions of the timeline

As for any student with an actively engaged supervisory team, I had to create a timeline for completion. I knew that, most importantly, I had to present something that looked realistic, even though, knowing myself, I could not accurately predict my attention, cognition and fatigue levels for the remaining 12 months or more. It was a case of being seen to comply, while having confidence in myself to do what I needed to do. There was no point trying to pressure myself into performing on demand, as I know that the weight of that pressure can be counterproductive. And so, I resolved to do my best to keep to the indicated timings, but simultaneously maintained my own estimation of how long I would actually need and resolved not to feel shame about taking that time. I set out on this course, absolutely wanting to complete it and determined not be my own worst enemy in this aim. Conformity to external systems and standards does not come easily to me, which has pros and cons. It is sometimes futile and detrimental to my needs and sense of self. Though I was not able to suppress my needs to fit into the system, I used my self-awareness and to find a balance and a way through. 

With the end of my PhD approaching, it was time to complete my ‘intention to submit’ form and to submit before the year was out. I also needed to have more concrete discussions about confirming reasonable adjustments for the viva. 

My institution was not among the very few UK institutions that have guidance on reasonable adjustments for vivas. In addition to these documents (for example from Royal Holloway and University of Chester), peer connections through a disabled post-graduate researchers’ group gave huge informational and moral support to identify and ask for the adjustments I would need to allow me to engage in the spoken exam, especially concerning fatigue, cognition and communication. Having an online viva helped to meet all those needs, as I didn’t need to travel and recover from the fatigue and I could have auto-captions enabled to supplement the spoken communication which would offset some of the cognitive and communication difficulties.

Conclusion

The outcome of the viva was positive, though I’m still a little hesitant to call myself ‘doctor’ other than in the most informal conversations while sharing the news with friends and family. I do have some corrections, which is an outcome I am comfortable with. I believe in my findings and in my voice as a multiply marginalised researcher.

Ever one to pursue my interest, follow my own path in my own time and to not be ashamed of being myself, I identified what I needed to enable me to engage with the systems involved in completing a PhD. This, for me, was less stressful than attempting to fit myself into a system, which simply does not work. 

For students in similar situations, I have three simple but important recommendations: know the policies; know yourself; know your value.

Biography

The author is a successful viva candidate in the UK. They are currently connected across various networks and are engaged in some undergraduate teaching. They have submitted conference abstracts with peers and former colleagues as co-authors. They also plan to publish key research findings that have relevance for academic and practitioner audiences alike.

This blog is kindly sponsored by G-Research