Invisible Illnesses

by | May 3, 2018

Beginning life at the University of Oxford as an international postgraduate is a momentous event and one that brings a host of new challenges as you settle into life in an entirely different country. Just finding suitable accommodation as a postgraduate is a herculean task and inevitably leads to weeks of stress and disappointment in search of an affordable flat and roommates who clean their dishes. And that is without the pressure of achieving the academic excellence expected of students at this university. Now add to this an illness. Imagine having the flu. Imagine the the fatigue and the aches, the nausea and the mental fuzziness. Now imagine having it all the time. Imagine having a flu that just won’t go away no matter how much medication you take and how many doctors you see. Your body is functioning at less than 50% but you are at Oxford, and all the pressures I have already mentioned are piling up on your weakened, slumping shoulders.

I doubt that most of the people reading this have experienced months-long flu. Your doctors would probably be alarmed if you had. But most of you, I imagine, have had the flu and so can guess what it is like to have a chronic illness. A chronic illness is an illness that a patient has over an extended period of time. It’s an umbrella term that can refer to illnesses as varied as Rheumatoid Arthritis and chronic hiccups (it is a thing I promise). Mental illnesses also fall under this tent-sized umbrella, which can make it difficult to have a meaningful discussion about managing chronic illness. Over the next eight weeks I will be approaching various aspects of coping with chronic illness at university from the perspective of the students who suffer from them, often in silence. My hope is that this extremely brief discussion will give chronically ill students a platform to be heard and considered at the university. I want this to be the start of a longer process.

I have been diagnosed with rheumatoid arthritis, fibromyalgia and hypothyroidism (amongst other chronic conditions). These illnesses fall into the category of invisible illness. A person who sees me in the street won’t be able to detect any visible sign that I am sick or disabled. Our society has been visually trained to view illness and/or disability as something we can see, a condition that has clear symptoms and a short dictionary definition. Unfortunately, diseases don’t pay attention to cultural constructions and therefore those of us with invisible illnesses have often been ignored. The pressure to look sick or disabled has also forced many of us into silence. The fallout from breaking with the codes of visible illness means that often those with invisible illness are not believed, are ignored or worse assaulted for their disobedience. We therefore cluster in small communities, often online, where we hope to find some understanding and support for the pain of our exclusion. But as more celebrities and influential figures come out as being chronically ill, the discussion around the struggles we face has begun to move to more mainstream platforms.

Lady Gaga’s public struggle with Fibromyalgia, a disease that is still seen as controversial by some healthcare professionals, and the outpouring of support from her fans that followed, has left many of us surprised. Where were these voices when we were fired from our jobs, accosted for using disabled parking or denied access to healthcare on the grounds that we weren’t really ill? Where were they when we lost friends and family? Lady Gaga’s bravery in speaking out about her invisible illness made it clear to me that I could no longer keep quiet about my own illness and the years of solitary struggle and discrimination that I have faced as a result of it. I am not not the only one who feels like this. Online forums and support groups have flourished in recent years, and are no longer private. Charities and NGOs proudly declare that we are not sufferers but warriors. And platforms such as Instagram are filled with inspiring posts by members of the community that proudly reveal the aspects of our lives we have kept hidden for so long: the weeks spent bed-ridden, the small pharmacies in our homes, the very visible signs of illness and the multiple trips to doctors and hospitals that we make on a daily basis.

As a long-term postgraduate hoping to become a researcher, my experience of chronic illness has often been connected to academia, to being a student. My interactions with other students who have invisible illnesses, especially at Oxford, has led me to believe that it is critical for the broader student body and faculty to be made aware of our experience. Each week, I will undertake to discuss a topic relating to invisible illnesses in academia, from mental illness to teacher/student relationships. Please add your voices, your stories and images to the comments and help me to spread understanding in the hope of provoking change for all chronically ill students.

Photo: Uwe Kils