Dialogue is vital to the research community. This week, PhD researchers Emma McCabe and Eeva Savolainen speak about navigating PhD life with disability and chronic illness, the labour of locating and gaining access to health resources, and the importance of connection and solidarity among chronically ill and/or disabled* scholars.

Emma: I guess we should start by introducing ourselves. I’m Emma, a fourth-year PhD student at both the University of Stirling and Glasgow. My research focuses on queering categories of sex in early modern medicine and drama… So, I guess the reason we’re doing this blog is to talk about our experiences as chronically ill and disabled PhD researchers and how we’ve navigated the PhD thus far. In terms of my own experience, I was diagnosed with both Autism Spectrum Disorder and ADHD during my PhD, which was quite a gruelling and drawn-out process, and unfortunately there’s not a lot of help on the NHS for either condition. I was also diagnosed with fibromyalgia and chronic migraines after having Covid multiple times as well. So, yea, that’s been really, really fun.

Eeva: I’m Eeva, a second-year PhD student—also cross-institutional at the University of Stirling and Glasgow. My research is on the cultural history of diagnostic anxieties and nineteenth-century Gothic literature in Britain. Like Emma said, we were keen to do this post because we’ve found it so useful to have conversations with each other and we wanted to invite people into that conversation—to share those conversations with others who are chronically ill and/or disabled. I am diagnosed with complex migraine, which vacillates between chronic and episodic. To give you an idea, during a flareup, I often have between five and seven pain days a week, which can make navigating the various commitments of the PhD quite tricky.

Emma: I really like how you framed navigating illness in terms of conversation, because that’s exactly why we wanted to do this as a dialogue rather than a blog post. Navigating these issues is always about being in conversation with each other, with medical professionals, with your supervisors, your institution, funding bodies, employers, friends, family… Thinking of the PhD specifically, how do you feel you’ve navigated the relationship with your supervisor? Have they been supportive of your needs? What’s your experience been like?

Eeva: I’ve been very lucky with my supervisors. My primary supervisor has been incredibly supportive; I had to take a month of medical leave during my first year, for example, and she really helped me through that process, which can be a bit daunting. As I am SGSAH-funded, it was a matter of figuring out the sick leave policy with both SGSAH and my HEI, but both of them were very supportive. I have also found it really useful to have conversations with my PGR peers; finding other chronically ill and/or disabled researchers to talk with has been a game-changer for me. What’s your experience been like?

Emma: Yeah, I’d echo what you’re saying about how profound it is to connect with a peer group that can relate to your experiences. For the first couple of years of my PhD, I found the whole experience really isolating and damaging to my mental health. Firstly, it was Covid, my pain levels were up, my anxiety levels were up, I was dealing with a lot of family trauma, and I was not progressing the way I thought I would. I internalized everything and it was really, really hard, and I felt like a failure. Coming into contact with other people who are also chronically ill or disabled, it’s just so helpful to know that other people have similar experiences and you’re not alone. And seeing people succeed who have similar experiences gives you hope that there is a way through this. Of course, a big part of getting through it is having that support network in place. In terms of my supervisors, I am so lucky. My supervisory team have been super open, super compassionate and super supportive, even if they don’t always know how to best support me. My primary supervisor, today, described our supervision as a mutual learning process: he’s adapting his supervision style; he’s having to challenge established patterns of thinking, and he’s discovering ways of learning and writing that are new to him. It goes without saying that the PhD is a learning curve for me—but not just in terms of content—it’s been a self-reflective, sometimes painful and sometimes joyful journey, in terms of understanding myself better.

Eeva: I’ve also found a lot of joy in learning about EDI work, and I’m trying to implement that as much in my work as I possibly can. There are a lot of accessibility issues and ableism in academia, and it’s something I’m aware of as a chronically ill scholar, but I also keep learning from my peers with different impairments and lived experiences. I also find that my experience as both an immigrant—in particular, as an ESL speaker—and a chronically ill scholar sometimes creates unique stumbling blocks. For example, I experience transient aphasia and other cognitive symptoms, which some people have interpreted as a lack of fluency, and that I often feel I need to explain. Some of it is internalised xenophobia and ableism, and I suspect unlearning those thoughts will likely be a lifelong endeavor, but I’m also finding I’m now more confident in owning that the way I speak is influenced both by where I’m from and by my experience with a chronic neurological condition. I should also note that I am white, and find it important to articulate that while I sometimes encounter a mix of xenophobia and ableism in a professional context, I don’t face the structural racism that my BIPOC peers do.

Emma: I think it’s really important for researchers to know that you can take leave of absences from the PhD. There are different policies for different institutions, and finances to think about if you’re self-funded, but it’s really important to know that there are support infrastructures there. With SGSAH, we’re entitled to up to 13 weeks of paid sick leave each year. It’s also important to note that the AHRC have disability student allowance for things like assistive technologies or if you need a mental health or study skills mentor.

Eeva: That’s a really excellent point. I just want to mention that the DSA is not accessible to international students. That doesn’t necessarily mean there is no support to be had; I’m an international student, and I’ve been able to access support through the Disability Services at my HEI. I would say sometimes there is this feeling for some of us that we shouldn’t ask for support, but I just want to say that the structures are there for us to utilize.

Emma: That’s really important to note. It’s good to know individual institutions have resources if you can’t access AHRC funding. Do you have any other tips or suggestions, generally?

Eeva: Only that there are so many of us, and I find that the more I open up about my experiences and connect with other chronically ill and/or disabled people, the more manageable all of this feels. It’s also made me feel much more hopeful about my future as an academic. I don’t have a lot of tips to give necessarily, but I would say just talk to people if you feel comfortable at all—or even if you don’t feel that way at first—because there is so much solidarity and power in connection.

Emma: Solidarity really is the way forward. The more forthcoming we are about our experiences, the less intense internalised ableism and imposter syndrome will become, right?  I used to beat myself up all the time that I wasn’t working from 9:00 to 5:00, but talking to other people helped me realise that most ideas of productivity are a myth. That’s helped me overcome some self-consciousness with how weird I work.

* We use the term chronically ill and/or disabled in this post to include a variety of self-identifications.

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