I Didn’t Recognise Myself Anymore: Grieving Who I Was Before Chronic Illness
I first noticed that I was unfit when my partner and I went swimming. I was never a confident swimmer, but after only 300m I was wiped out. My vision blurred and I couldn’t breathe. I had to sit on the side of the pool and regain composure while my partner finished her swim. It was honestly embarrassing, and led to a desperate need to ‘get fit again’.
It wasn’t until I found myself having severe heart palpitations and unable to get out of bed that I realised it wasn’t just the obscene amount of crisps I’d eaten over the winter - in fact, the salt probably helped - but rather it was my heart that was causing the issue.
After seeing a cardiologist, chatting with a colleague who shared the same symptoms, and falling down a research rabbit hole, I confirmed that POTS was the culprit.
And yet, even with a diagnosis, I knew that I would be fine. After all, my colleague managed to get to work every day, go to the gym, and dance until 2 am. So why couldn’t I get out of bed?
There were so many days when I felt awful. I knew that I shouldn’t go to work, and I didn’t understand what spoon theory was yet, but I needed the money and had to cart myself in, only to wind up feeling even worse the next day. It was an exhausting cycle of crashing out, feeling okay, doing too much, and crashing out again. It made it impossible to enjoy the good days for fear of another crash.
And there were the co-morbidities. Endless migraines. Severe depression. Relentless brain-fog. I couldn’t think, feel, or function.
What always hurt the most were the reminders of my life before. Hikes with my dad would banish me to bed. August beach days would make me faint. Even my passions like photography have been impacted as I’m increasingly house-bound.
And it wasn’t just the physical losses. I was losing some of my spontaneity and independence, like the simple joy of going for a walk. I felt my personality shifting in a way that didn’t feel like me.
I used to chase the big moments. I loved five-mile hikes and late nights out with friends. I adored going out to take photos. Now, I’ve realised that I must collect the small experiences as gleaming treasures. A stretch of sunshine. A deep breath to relieve the dizziness. A conversation that reminds me I’m not alone.
Today, I sat in my local park with a sketch pad and portable paints. I made a terrible painting of a cat while the birds chirped, kids ran around playing, and the sun hit my back. It was peaceful, carefree, and non-exhausting. I let myself exist and have a moment of unashamed creativity.
I’ve realised that I have to stop apologising for prioritising my health, and just be.
And for now, that’s enough.
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