Today, Tamara Cooper reflects on an important topic: chronic illness and disability in academia. Positive talk about accommodating chronic illnesses and disabilities often runs well ahead of tangible actions—your ECR rep, André Brett, is legally blind and knows this all too well. Tamara draws on her experience of endometriosis to give suggestions to those postgraduate and early career historians who live with chronic illness or disability and work within a system that is not always sympathetic.
When I submitted my PhD thesis in March this year I found myself both mentally and physically fatigued. While some of this fatigue could be put down to the insanity of my rush to the finish line, on reflection a fair chunk of it was caused by endometriosis. Throughout my PhD candidature I was under the impression that my endometriosis had no tangible effect on my ability to write and research; it was only in the last six months or so of my candidature that I realised this was not the case.
For those who don’t know, endometriosis is a chronic, incurable disease that affects approximately one in ten women of reproductive age, though some suggest that this figure is well underestimated. The disease occurs when cells similar to the lining of the uterus grow outside of the uterus and on the surrounding organs and tissue. The main symptoms of endometriosis are severe cramps during menstruation and prolonged and heavy menstrual cycles. Unlike many diseases, the severity of the symptoms does not necessarily reflect the severity of the disease. It has on average a seven to ten-year delay in diagnosis from the onset of symptoms and the only way to diagnose it with any certainty is through surgery. For myself, I started showing symptoms at the age of twelve, but I was not diagnosed until I was twenty-three years old. This diagnosis and excision surgery was six months before I commenced my PhD studies.
This was not the end of my journey with the disease as anyone living with a chronic illness will tell you. The next step is figuring out how to live with the illness. Chronic illness does have an effect on the way you live your life, but it does not need to dominate it. Below I wanted to share with you some of the things that helped me to live with this illness while completing my thesis. It is by no means a comprehensive list of strategies but rather a start to the conversation of how to accommodate research and chronic illness.
Know your symptoms: While this seems straightforward, many chronic illnesses have wide and varied symptoms that manifest differently in different bodies. You need to take your time to learn how the illness is affecting you. For instance, it took me three and a half years of my four and a half year long dissertation to learn that fatigue is a major symptom of my illness and that I need to watch for and manage the signs of fatigue before it wipes me out.
Quality versus Quantity: On bad days I discovered I could achieve more in a focused three hours than in an unfocused six hours. So I would sometimes work intensively for a few hours without a break and then take the rest of the day off, instead of forcing myself to stay the computer all day. I also realised that on the really bad days that is was better to just take the day off to recover than try to push through and come up with material that I would only need to re-write later (after I had delayed my recovery).
Alternative Therapies: While pharmaceuticals are fantastic (you will never find me skipping a vaccine!) they are sometimes not enough to manage symptoms; when this happens, it is good to look at the alternative therapies that are available. I’ve found that regular remedial massages, as well as exercises like yoga and pilates, help me deal with the aches and pains of endometriosis. I know ladies who swear by acupuncture and Chinese medicine and others who use naturopathic remedies to compliment their medications. With chronic illness there is no one therapy to suit everyone, so try everything!
Diet: While it seems obvious, food can be central to managing chronic illness. One of the best things I did to help manage the symptoms of endometriosis was to pack myself off to see a dietician who put me on a Low FODMAP. This diet (when I follow it) has helped to drastically reduce symptoms like bloating and inflammation.
The culture of busyness: This is perhaps the hardest part of any chronic illness, juggling your medical needs with society’s constant pressure to always be busy. In academia, this is further exacerbated by increasing rates of casualisation and employment precarity. The simplest answer to this is to simply refuse the culture of busyness, schedule in time off, even days off. However, if you are casually employed this is not easy or even possible sometimes. But I still think it’s important to push back against this idea of constantly being busy even if it’s only small. Give yourself time to just be. This might mean taking a daily indulgent bath or perhaps making reading for leisure a priority. It might also mean taking some time to simply sit and let yourself breathe; whatever it means to you, own it and don’t let society make you feel ashamed for it.
As I said before this is by no means a comprehensive list of strategies – it is geared towards my own experience with endometriosis – but rather a conversation starter. Many people within academia live with chronic illness and many find it hard to juggle the demands of research against the demands of illness. I think the most important lesson that my thesis and my illness taught me is that I don’t need permission to be sick and that even though my illness may not be visible it is by no means less intrusive. At the same time, it does not need to define my life. To all my colleagues with chronic illness, we got this!