When I became ill at Oxford I was desperate for a diagnosis, I spent hours trawling the internet, I convinced myself I had Lyme disease, I had MS, I had a brain tumour. Since puberty, but probably before then, I had suffered from depression and anxiety. At Oxford, in my second year, things got very, very bad. That time for me is somewhat of a blur. Heartbroken after the death of my grandfather, partying constantly and overwhelmed by the volume of work, I began to see things, I kept them to myself convinced I was becoming Schizophrenic, that I was, as my grandfather used to say, "going gaga". My sense of reality began to slowly unravel and after a particularly bad incident, I visited a Psychiatrist. He traced the patterns of my anxiety and depression but the narrative became stuck when he prompted me to describe if I had any other symptoms, the auras, constant headaches and colour blackouts didn’t fit, he sent me to a Neurologist, I was tested for epilepsy four times, the final time was an “ambulatory EEG”, that meant wearing a beanie every day my first week back at college to cover the electrodes that snaked down from my head to a small bag at my hip. On the one hand this was mortifying, on the other I was grateful for the excuse this possible diagnosis gave to my increasingly strange behaviour. When your visual field becomes unstable, when immobile objects move, people glow and sounds echo on endlessly, you come off strange, disconnected, you are out of sync with the reality that everyone else is consenting to, and it was a small relief to point to this possible diagnosis and say, this is why.
For this reason and others I became focussed on receiving a diagnosis, crossing my fingers before the MRI for a benevolent brain tumor, trying to manipulate my brain waves on the EEG machine to manifest a seizure, anything to be out of limbo, to have a reason for why I felt so terrible, to believe this was the reason I felt so disjointed from the world. I remember being in an office with my consultant, the ultimatum on the table, epilepsy or conversion disorder. As someone whose entire sense of reality was dissolving, this was a bleak fork in the road, one direction, care, salvation, the other, more painful conversations with the Italian analyst I was seeing to pin down exactly how my entire vision turning blue was directly connected to my poor relationship with my father. I spent two years being investigated for epilepsy before I had a single blood test, before the pockets of antibodies to different things were found. I remember parts of that term at Oxford so vividly, they found my autoimmunity, but the antibodies attacking my nervous system were novel, newly discovered, they didn’t know the prognosis, they weren’t overly worried, I was under the limit where it caused imminent death, it was really quite tiresome for me to be so upset that there wasn’t a clear plan to get me better.
I finished my exams at Oxford in a small room in Tom quad, my exam paper freckled by the recurrent nosebleed I was having. My last night at Oxford was probably one of the bleakest of my life, there was a ball at our college that night, I’d left my windows open, they’d put flood lights on the building, and the white lining of my floor to ceiling curtains had been illuminated, had become a beacon to every insect in the meadows, and the fabric was coated with every species of moth, water fly, and mosquito. I slept in the bath that night, with a quilt pushed under the door, the sounds of the ball surrounding my room. I left, I never looked back, I never went to any of my follow-ups at Oxford, and from that point I ignored every ache, every strange rash or fever that happened after, I refused to go to a doctor again, for fear that I would be told I was imagining it, I was an anxious young women, I was essentially, hysterical. I wasn’t surprised when years later I looked at the antibodies they had found in me and saw that all the symptoms I had experienced, which weren’t at that point tied to that disease, now listed clearly, with bullet points.
Somehow when I became sick again I didn’t learn the lesson. I once again began to dive into the recesses of the internet, of reddit and youtube. The difference this time is that I knew it would be autoimmune and unlike my previous illness which was so internal, which was such a mental torture, this time my symptoms were purely physical: fatigue, night sweats, multiple rashes of different colours and constellations, fevers, weight loss, disabling joint and muscle pain. Somehow the mental strength I acquired recovering from my previous illness gave me the ability to endure this one. But still I looked for a diagnosis, I became fairly convinced I had lupus, when the butterfly rash started to appear on my face I thought it was certain, but when the doctor said it was unlikely to be so after another round of blood tests, I felt that sinking feeling again, the same one I’d felt with the consultant in Queen’s Square, that I was somehow imagining my condition. That’s why although I hate it, I am so grateful to be on prednisone, its a stop gap until I have a proper diagnosis and can have more targeted treatment, but when I scroll through the reddit and facebook groups for the conditions I may have, I am so grateful to not once again be one of those ignored young women, suffering, living in constant pain and discomfort, one of the many undiagnosed and unmedicated . Prednisone has given me my moon face but it has also allowed me to live a relatively normal life, I can run, I can dance till four in the morning, I can use the weekends to paint and write and not simply sleep.
Perhaps the reason I am not fighting for a diagnosis now is that of all the possible conditions I have, the treatments are fairly similar, prednisone, immunosuppressives, other medications to combat the inflammation and overactive immune system. All paths lead to a similar outcome. And I have been believed, I think if I had only the joint pain and fevers I would be living a terrible life, still waiting for the Rheumatologist appointment for 7 months, every day painful, every day a battle. The doctors have tried to take me off steroids several times, the first time my thumbs turned black, the second my legs purple with white toes and fingers, the third, my feet swelled unexplainably and I was covered in deep purple bruises. Each time I sent a photo to my GP and Immunologist and was immediately plunged back on a high dose of prednisone until these phenomena receded, and however traumatic they were I was so grateful, grateful to not be told that I was imagining this, to be able to take a photo and say here is what's wrong with me, instead of offering a description of my sensations and pains and being told they were not valid, they could just be anxiety. Anxiety does not change the colour of your limbs, feelings don't leave bruises. This experience has made me confront how deeply traumatic it was to be sick and to not only have had my sense of reality crumble but to also feel that it was somehow my fault, and the shame that went with that, that even now makes me hesitate every time I have a flare and need to call the doctor, that makes me text endless photos to my mother before I call the doctor to ask, "this is not normal, right?"
A mania for a diagnosis is an illness in itself, it keeps one unwell, no one should pay that much attention to their own body, there is no true normal state of health and the line between what it is to experience the normal fluctuations of life in a body and what is a symptom is sometimes impossible to pinpoint on one's own. One of the reasons I believe I recovered from my first illness is I stopped trying to fight it, to understand it, I leant into the vibrating patterns of colours like you have to when tripping, I stopped caring when I said the wrong words or couldn’t recognise friends, I smiled it away, there was no point obsessing or worrying over something I had no control over, and like the tide going out, wave by wave, these issues receded. I’m still left with scars, I can’t direct myself, I have a terrible short-term recall and when I’m tired people start to glow and patterns flicker through the air, but it also taught me how far the mind can be stretched and twisted and can snap back, how much suffering you can endure and come out alive, changed, but alive, and not always changed for the worse.