Letting go of what no longer fits: How I came to adapt to chronic illness

After speaking with my neurologist and spending a few months in this physical state, the gravity of my symptoms, mental, emotional and physical, begins dawning on me, and after some time I come to an awareness of the fact that I feel too weak to carry it on my own.

In February 2022, I was a university student and a part-time medical receptionist at my local general practice. I hadn’t selected my majors yet because I was so unsure of what I’d like to do with my degrees in the future, so I chose to take as many different electives as I could over that year of my study. After finishing my study for the day or my shift at work, I’d use the remainder of my energy to exercise and socialise. Things were so sweetly simple, and I had no idea how my life and my identity would transform in the coming months.

I begin a new job at one of the university’s Psychology clinics doing triage, a welcome upgrade from three years of scut-work and spoon-feeding doctors at the medical practice. I am being treated for a suspected autoimmune condition by my rheumatologist, who trials me on various medications to help with the joint pain I’ve been experiencing over the last year. It’s been uncomfortable — but not so bad that I’d have to cut back from my work or study. A few weeks after beginning a new medication, I experience a throbbing, pulsating sensation along with nausea at the back of my head whenever I clean or exercise: what I gather after a few days of consistent symptoms to be a migraine. I wait for it to subside, but it seems to be ongoing. After some weeks of research into the stories and advocacy of patients with a variety of different health conditions ranging from iron deficiency to ever more serious and life-threatening diseases like cancer, I see that sometimes in medicine this is what happens: you try to treat one problem, and you end up with another. There is so much about pharmacological interventions and their interplay with our bodies, all so unique, that we still don’t know. My general practitioner whom I have always looked up to told me it was hard to say what caused my migraine given it persisted after ceasing the medication I was trialled on, but there are certainly a few likely possibilities. 

As the days move on, I notice the pallor of my skin, and grow to find it distracting. In the mornings, I apply two extra layers of concealer under my eyes to hide their slowly darkening purplish-brown hues, and bleach my hair from jet black to a lighter shade of brown in hopes that they’ll make my overall appearance a little bit brighter. Still, I feel weak and somewhat irritable. I manage to hide this from my new coworkers and distant friends over an extended period of time, but my mother becomes worried and my mood begins to crack under the weight of my symptoms.

A few weeks later, I’m picking up some Korean fried chicken from a nearby store — comfort food. I’d bottled up a disturbing mosaic of emotions over the last week: frustration, confusion, disappointment in my healthcare providers and myself. Instead of dealing with them sagaciously, with something like exercise, journaling, or a conversation with a friend, I decide to gorge myself on the entire box, something I don’t think I would’ve been able to do even if I was actually hungry. Within fifteen minutes, I begin to experience the most intense nausea I’ve ever had along with head pain side by side. I’m having trouble thinking straight and communicating, and eventually I need to throw up. 

It’s after that point that I realise I had just had my first disabling migraine attack. Along with the stress I’d been experiencing and the general sensory overload of modern life, the monosodium glutamate, also known as MSG, was the cherry on top that pushed my neurochemistry over the edge: resulting in debilitating physical pain and other excruciating symptoms. I’m able to discern this after doing some research on migraine “triggers”: which include light, sound, certain foods, high-impact exercise, and stress among various other things. I realised that my migraine was likely not going to subside on its own, and I would need to begin seeking treatment from a specialist.

After speaking with my neurologist and spending a few months in this physical state, the gravity of my symptoms, mental, emotional and physical, begins dawning on me, and after some time I come to an awareness of the fact that I feel too weak to carry it on my own. I talk about my experience at length with my boyfriend, and whilst he reassures me, I still walk away from the experience feeling isolated. A few months later, when we break up, I decide to quit my job to focus entirely on university and conserving my energy levels. I join patient advocacy groups online, and begin to feel part of a community and something bigger than myself. Instead of spending my days reckoning with my seemingly ever-increasing fatigue, I find hope in the stories of many people who have also been through the same thing. I note that complaining does not make me feel better, and getting on with life with acceptance for my limitations is what does.

It’s been a year since then, and with treatment, I have improved to an adequate level of functionality. I used to, and sometimes still do wonder whether I’d grown up too quickly through this experience, whether old friends would struggle to have conversations with me because we had less in common. I sleep early and am increasingly selective about how I spend my time. My daily routine is simpler, and my circle is much smaller. Even my mornings are slow, and I spend most of my time working, studying, exercising, reading, resting. There isn’t much alcohol or partying, but somehow I don’t feel as much need for it. 

I wouldn’t go so far as to call illness or enduring suffering themselves gifts, but I would say that the gratitude, appreciation and increased regard for the pleasantries in life most certainly are. Whilst I clung to my pre-illness identity for the better part of two years for comfort, I found that letting go of it with grace is what brought me the most peace.

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