‘Grief Comes with Any Long-Term Chronic Illness’: Learning to Slow Down and Live with Autoimmune Disease
By Elise Tyson
In the wake of chronic illness, returning home was listening to my body and allowing it to rest. So why did it feel like retreating with my tail between my legs?
When I moved to London from Australia, I was mesmerised by its frenetic lifestyle. As someone who thrives in chaos, bustling cityscapes and sweaty nightclubs, home had felt stagnant to me for a long time. Moving to the other side of the world is never easy, but I entered 2023 the happiest and freest I had ever been in my life. Walks near my home were often accompanied by a smile on my face for no reason. There was so much life to be lived in London, and I was intent on living it all.
By May, my newfound freedom felt short-lived. I was diagnosed with Ulcerative Colitis, a type of Inflammatory Bowel Disease. My immune system attacks the lining of my intestines, causing inflammation and ulcers. I was put on medication that lowers my immune response and informed that I’d have to remain on them for the rest of my life. I should manage stress levels to avoid a flare, they said, but I wasn’t given any practical information on how to do so. That was basically the extent of information I was given by my (overworked) health team.
There’s a level of grief that comes with any long-term diagnosis. In my journal, I started referring to my time in London as ‘B.C’: before colitis and ‘A.D’: after diagnosis. I mourned for my new life. It was a double-edged sword; I realised that despite my intentions, I practised ableism by default as I’d never had to consider life through the lens of someone chronically ill. I also felt like I didn’t have a right to complain because my invisible illness didn’t totally inhibit my ability to work, socialise and retain my autonomy. I could exist without the outside world realising I was sick. I was still deemed ‘productive’ under our capitalist regime.
Suddenly, I was experiencing chronic stress along with my chronic health condition. No amount of deep breathing or meditation could ease the anxiety of financial instability. I woke up most mornings feeling like I was drowning. The healthy food I ate – predominantly vegan, wholegrains, salads – somehow only exacerbated my condition. I started eating basic meals, and sparingly. I could tell I was in a flare, my symptoms having returned, so I did new tests and learned my inflammation levels had tripled since my initial diagnosis three months earlier.
My parents insisted on flying me home to Australia for two months. I was grateful for it. But I was also fearful. Going home meant finally accepting that I was sick. This was a loaded statement at the time. I felt like I was giving up, running away the moment things got tough. I’d always prided myself on my resilience and independence. Coupled with heightened expectations as a woman to ‘do it all’, I was failing. I’ve since learned that almost 80% of those diagnosed with autoimmune diseases are assigned female at birth. It’s cruel; society expects us to shoulder burdens effortlessly in a way that cis men aren’t. No wonder our bodies attack themselves.
I worried I’d regress in my childhood home, after ten years living away from it. I feared London would find me replaceable, that I would return to this transient city and find I no longer belonged. I’d missed family and friends, especially my niblings. But when I’d pictured my first visit back to Australia, I saw myself happy and thriving. I didn’t envisage returning to sympathy or worry. I also didn’t plan on being sick, exhausted and depressed. My boyfriend said he would visit me in Australia, which felt like a lifeline. He could provide a tangible link to connect my worlds together; proof of the life I loved in London, and a witness to the upbringing in Australia that shaped me.
I started feeling better about my return, trying to focus on the positives. I was going to read, relax, practice yoga and, most importantly, write. I was going to lie in the sun, go for bushwalks, and feel sand between my toes again. My resting state had been constant motion. Now, I would rewire it. I would slow down, and I would heal. It was only two months. Why was I catastrophising? Why couldn’t I just allow my body to rest, as it so desperately needed? What was the worst that could happen?
A week into my trip, my relationship ended. My promised lifeline was not only untethered; it had never existed. My idealised relaxation in Australia disappeared. What I’d thought was rock bottom had actually been another ledge from which to fall, and I finally broke on impact. My sleepy hometown provided the perfect backdrop for grief to envelop me. Life had slowed to the point of a standstill, and it was painful. I worried I would never be healthy again with a nervous system in constant dysregulation. Then, I got my latest test results. I’d entered remission.
The positive news was initially twinged with cruel irony. Over time, though, it granted me a clean slate. I realised the relationship itself was actually one of the great catalysts in my flare, rather than a saviour. I spent time with my niblings, giggling over dress ups and backyard cricket. I read, watched films, worked on screenplays. I threw myself into flawed characters whose pain provided catharsis and protection. I focussed on my health properly, reconnecting with my old psychologist and practicing gut-directed hypnotherapy. I leant on my family as I never had before, and reached out to friends near and far, thankful for the wonderful people in my life who stuck around – the real lifelines.
My trip back home took a different turn to the one I anticipated. I still feel residual anger that I was pushed to such brinks of depression that I couldn’t enjoy my time with my family as much as I hoped to. But I’ve come to terms with it. I have a newfound understanding of the importance of taking space to heal, of sitting with the uncomfortable, of heeding the warnings of my gut, of protecting my heart for its intrinsic link to my health and respecting the incredible vessel that is my body.
In today’s society, slowing down is sadly a privilege that many aren’t afforded, even with an autoimmune disease. While grateful for it, it’s not something that came naturally to me. After two months cocooned, I’m still learning. But stepping back into London’s bustle, the winter wind whipping the city’s familiar smells into my face, I’m determined to stay healthy. To make the most of my life here without sacrificing my most important gift. And to find myself walking down the street with a silly little smile on my face again.