By Sibyl Adam |

I’m finding it difficult to start this blog post because I have a seething pain in my lower back. With some movement, it may go. It may take a few minutes, maybe 30, or it will just remain for the rest of the day. I’m also irritated by everything for absolutely no reason. I’m frustrated with my irrationality. There’s a bunch of events I want to go to next week, but unless something miraculously changes, I know I won’t be able to go. Another week of disappointing people and turning down invites. I also feel guilty for even writing this blog post: my problem is supposedly not life long and some people actually have to deal with far worse pain for life. Indeed, I’m incredibly privileged as a funded PhD student as I don’t have to work part-time. I don’t have to suffer sat down 9-5 in an office; I can work around my pain in my own home. I don’t, funnily enough, feel worried about my PhD thesis. Although it may interrupt the free flowing ability to do research (rather than the amount I can work) on a day-to-day basis, it doesn’t necessarily affect the way I feel about my work. The consistent nature of the thesis I’m fine with, it’s more the unexpected stresses of ‘extras’ and the inevitable last minuteness of certain things that I find difficult to handle.

This is a snapshot of ‘a day in the life’ of a PhD student with chronic pain. I’ve had it since the beginning, caused by a recognised and treatable muscular problem that whilst chronic shouldn’t be life-long, and for the majority of that period it has bothered me for a few hours a day, rather than most of the day. For some reason, unbeknown to the medical profession, it has worsened in the last few months. Or perhaps, my ability to cope with it has worsened. Overall it’s manageable but very unpredictable.

As anyone who has ever met me has probably noticed, I’m very extroverted and like to be around people. This changes with pain because being in pain all the time sucks the joy out of everything. I’m sorry to sound so depressing but that’s the truth of the matter. When asked if I was interested in writing a blog about chronic pain, I was wary because I felt that I couldn’t write anything positive or come up with a top 5 ways of dealing with it, because it felt like lying. There’s not really any other way to paint the way it feels. The inability to feel normal and comfortable no matter what I’m doing (working, socialising, relaxing) wears me down.

However, on that note, I will say that in the privileged world of academia, illness brings a huge smack of reality. It’s difficult to care about office pettiness or how good your vocabulary is when you’re facing the reality of long-term illness. Sometimes a sense of humbleness befalls me. I often joke to my partner that my life was getting too easy, what with having the privilege to do something I love and be paid to do it, so fate needed to give me a challenge. On a serious note, my chronic pain has made me understand the importance of my PhD alongside other things in life. It’s just a job. I care about it, it satisfies me intellectually in a way nothing else can, but jobs, events, acquaintances come and go but my happiness and the people I care about are the fundamental building blocks to my existence.

Those with disabilities or chronic illness often talk about ‘spoons’ as a way of explaining the limited energy they have on a day-to-day basis and due to their limited nature, they have to make choices on how to spend their ‘spoons’ each day. This helps me to rationalise the way I divide up my time and also stops me from feeling guilty about constantly saying no. If I only have so many good hours, I’m going to spend some of them doing things I enjoy. It’s one of the most important decisions I’ve made since my pain got worse purely because it helps me value positive feelings on a daily basis alongside the pain. I hope explaining it in this way helps my PhD pals to understand why I say I cannot attend events even when I appear well, happy and around campus a lot. It also may explain the apparent anti-socialness of others throughout academia, because long-term illnesses, and of course mental health problems, are actually very common. Since being open about my chronic pain, I’ve encountered a lot of other PhDs who also deal with long-term illnesses.

I’ve also developed a ridiculous degree of adaptability. I can work anywhere, yes, even at home. If I’m not in a big amount of pain, I’m straight to working. No social media, no messing. My time is precious. I relied a lot on group settings to work at the beginning of my PhD and throughout my undergrad and masters, but my chronic pain has made me realise it’s all about attitude rather than setting. It’s actually really nice working away from other people. To be blunt, you can’t feel others’ stress if you’re not near other people. This also frees up my time for long jaunts around my local dormant volcano or annoying my neighbours by playing the fiddle.

Arthurs_seat_edinburghMy friendly neighbourhood volcano.

I have no happy ending to conclude with. Chronic pain sucks. But thinking about it as a bottomless pit of despair gets me nowhere in dealing with it alongside my PhD. By remaining positive and balanced, generally through time management and by valuing the things I enjoy alongside the PhD, I am able to cope.

Sibyl Adam is a second year PhD student in English Literature at University of Edinburgh. Her research explores how everyday affective experience is narrated in a range of texts, including historical travelogues and contemporary fiction, about Muslim women migrating to the UK. If you need any advice about chronic pain and doing a PhD, or just want to complain to me about the issues I’ve raised here, I’m always happy to listen:

(Cover image (c); Image 1 (c) )