Well folks, here we are, headed into one of the stranger April long weekends in recent memory. Wherever you are, we hope you and yours are healthy, sheltered, and well in these strange and tender times.
To ring in the days off, we thought we’d share a post about self-care.
As scholars, we talk a lot about disability, and as teachers, we tend to think about mental health provisions for our students. But, chronic pain sometimes gets lost in the shuffle of hidden disability, if it’s noted at all.
Below, Kelsey and Sandra Chamberlain-Snider, a PhD candidate at the University of Victoria, chat about their experiences with chronic pain.
In my work for this blog and in my daily life, I write and talk about dozens of issues related to post secondary instruction and my experiences as an emerging scholar. Pain is rarely one of these topics.
Yet, physical pain has been one of the constants in my scholarly life. I’ve had roaming stiffness and/or pain in multiple areas of my body for years. Officially speaking, I have been diagnosed with a systemic form of arthritis. In reality, things are a bit murkier, and the diagnosis is closer to my rheumatologist’s’ current best guess.
In chatting about my experiences with friends and colleagues, folks have often disclosed that they, too, are quietly navigating on-going challenges related to pain, illness, or injury. (Strange coincidence side-note: Kim and I have EXACTLY the same autoimmune / chronic pain diagnosis.) While I don’t want anyone to experience discomfort, I have often found these conversations heartening: they provide new ideas or resources and remind me that I’m not alone.
So, I thought I would curate such a conversation for this blog.
To do so, I reached out to my friend and colleague, Sandra Chamberlain-Snider – a PhD candidate at the University of Victoria, who, like me was diagnosed with a systemic form of arthritis during her graduate studies.
KB: Can you tell me a little about your journey with pain as a PhD student?
SCS: I’d had pain for years but I’m in my middle-fifties. I figured it was part of life. And, I’d also had skin issues for a long time. My GP had been treating me for eczema. In 2016, I got a blood infection from the cracks in my feet, and he sent me to a dermatologist. He took one look at my skin and said: “That’s not eczema. That’s psoriasis.” That kicked things off. Then, a year and a half ago, I started seeing a rheumatologist who diagnosed me with psoriatic arthritis.
Now, the skin issues come and go. Sometimes, it’s great. But, the pain has been a constant. It’s difficult because it’s in your hands and you’re trying to write or type or even look half-way professional with colleagues, or you are interviewing someone and suddenly your hand will cramp up and it’s not like I can just get up and leave the room and shake it off. It became a bit of an issue.
For folks with musculoskelatal pain, there are lots of “tools” for self-massage, rolling, and stretching. Many of these can be purchased for a fraction of the price at your local dollar store: bouncy balls can be used for trigger points, rolling pins can be used as rollers etc.
KB: I get that. I have a few psoriasis patches and roaming pain and stiffness. The pain comes and goes from lots of different places including my left big toe, my left ankle, my right knee, both of my hips, my lower back, the knuckles on my left hand, my right wrist, both my shoulders, and my neck. Also, I currently can’t fully bend my middle or ring finger on my right hand, which all the doctors describe as – and I’m quoting here – “weird.” But, the relatively recent addition of pain in my hands has added an extra degree of urgency because it directly affects my ability to work.
SCS: For me, I know that’s a good part of why I’m in my seventh year of my PhD. My hands only give me so much time during the day. Some days are good. I can get a few hours in. Some days, I get half an hour in and then I have to take a break. And, you know how hard it is to go back into writing or researching when you’ve been interrupted in the middle.
KB: I totally do. Writing is a fragile art. Or, at least it is for me. Especially with heavy-thinking work: it takes time to ease into. If I get pulled away from it, I often have a hard time finding my way back.
SCS: Yes! I try to explain that to my husband all the time.
KB: And, there’s also a strange balance of figuring out when to attend to the pain and when to push through. My friends – many of whom are disability studies scholars – remind me that it’s important to pay attention to my body and that working more slowly can be an act of resistance. (For more on this, Petra Kuppers’ work is an excellent starting place.) I’m trying, but it’s … ahem … still a work in progress.
On an everyday level, I spend a fair chunk of time trying to find “hacks” to make my working conditions easier: I have figured out that suspenders let me keep ice on my shoulders while typing; I have crafted a standing desk from an ironing board (highly recommend); and I have managed to troubleshoot my way through the logistics of working lying down.
One of Kelsey’s crowning achievements: a do-it-yourself set up for working lying down. If anyone wants to try, the key is that you still need proper eye-line ergonomics, which means you need to align your forehead with the top third of the screen.
I’m super pleased with myself on most of these discoveries. But, I do find that simple things – like sitting ergonomics – are made harder by the structures of academia.
In the last six years, I have variously worked as a graduate student, sessional instructor, and postdoctoral researcher. But, I’ve never had a permanent office. Compared to the systemic discrimination and barriers that so many people encounter, this hardly constitutes an issue but it means that I can’t curate my working space.
SCS: Or, the space isn’t there when you’re able to use it. In 2016, we [Sandra’s family] got kicked out of our rental and we had to move quickly. In the new place, I have this little room to do work in. Which is great. I’m feeling good and ready to go. But, then my husband decides to pull out the ceiling for nine months, so I was working in the dining room area with two dogs, and I couldn’t get any work done. And, I went to the local library and the universities to work, but it wasn’t as efficient. So, finally, nine months later, everything was stable, but then the pain came. And, it was like you walk two steps forward and then get pushed back.
I [Kelsey] have experimented with loads of apps that help track pain and/or body cycles (pain, movement, menstrual cycle, sleep etc). Some help. Some don’t. The ones that do help offset some of the mental tracking labour.
KB: Totally, and it doesn’t only impact writing and researching; it also affects teaching.
Last year, I was mid-way through a class on performance and archives, and my pain suddenly flared. It was intense enough that I felt light-headed. At the break, I took myself to the washroom and had a very earnest conversation:
“Kelsey,” I said to myself. “Is there any chance you’re going to pass out? Because, if there is, you need to call off class.”
After a bit of back and forth, I decided I was okay to continue.
In retrospect, I think I’d try to handle that differently by signalling to my students I wasn’t feeling well or ending the class early. But, I often think about that moment because it drew my attention to how few resources were available to me to mitigate the situation.
Unlike elementary or high school teachers, university instructors don’t have colleagues down the hallway who can step in. I can ask people to cover classes, but pain isn’t predictable. And, even if it was, there isn’t a pool of substitute teachers. Usually, I’m asking a colleague, and I often need to bank some of those favours for conference travel or the like.
SCS: I think, too, it’s part cultural: When do you ask for help?
KB: Oh yeah … totally.
SCS: We’re academics. Even though there’s lots of issues and precarity, many of us are fairly privileged in that we get to study what we want to study. So, you’re not always quick to call out. Or to ask for a favour.
KB: And more generally, patriarchy, neo-liberalism, global capitalism – all the “isms” really – tend to belittle interdependence and asking for help. I’m trying to apply concepts from anti-oppression groups, disabilities communities, and critical disability studies to my everyday practices, but it’s not always easy.
Let’s talk about chronic and other kinds of pain, not only in private discussions over a beverage of choice, but also with our colleagues, students, and institutions.
SCS: And, when you’re in pain, you’re not always the most even-tempered person. My husband and I have been in each other’s lives for over forty years and he’s gone through some suffering as well. The last couple of months have been particularly difficult because we’re both in pain. And occasionally I’m like, “Oh my God, are we becoming this squabbling old couple?” But you have to step back and recognize what’s happening, which is, in the moment, so hard.
KB: Yes. I’d like to say that my experiences with pain make me more empathetic, and sometimes they do. But, when I’m having intense amounts of pain, that’s not always true.
And not all the work is personal. Some of it has to be broader. I’m trying – where I can – to push for, and model, systemic changes.
As a teacher, I try to incorporate pain, illness, and injury into access statements and course policies. I’m also working to recognize that not all experiences of pain are going to fall neatly into the purview of institutional access and disability protocols. I can (and want to!) work with students and colleagues to figure out how to navigate bodily changes and to respectfully support one another.
I’m also working to be more open with my own experiences, both as a principle (vulnerability can be really powerful) and to spark discussion. The more I talk to people about my pain, the more they talk about theirs. Those discussions are critical for changing larger circles of discourse.
SCS: Yes. Absolutely.
KB: And, this chat is part of that, I suppose.
SCS: Glad I could be a part of it!