Life is pain au chocolat 🥐

Where Emma talks pain

Somewhere along the line, between manic days and restless nights lying awake in pain, I became someone different.

But when exactly did that happen?

Did the change sneak in or hit all at once? I don’t know. It’s as though chronic pain and illness unravel time and memory, pulling apart moments and leaving behind only the fog of what was once familiar.

For people who live with chronic pain, understanding “when” things change is tricky. We’re conditioned to believe that defining a problem gives us power over it. But what happens when it isn’t a single event or diagnosis, just a slow dissolve of life as you knew it? What happens when you can’t pin it down at all?

Pain blurs memories, thoughts, and even self-perception. And so, in some ways, I lose myself a little more each day.

For me, Parkinson’s came before the label. Before anyone gave it a name, it was there, hiding in the pain and the slow deterioration, a quiet thief of time and self. It started small but eventually consumed me. The pain blurred out my edges, and my sense of who I was grew murky. How do you recognise yourself when you’re so focused on surviving each moment, each day, each ache? Over time, I became a stranger to myself, as though someone else had stepped in and taken over the life I once knew.

Chronic pain does that—it isolates, reshapes, and sometimes erases. Living in pain makes days long yet somehow shorter, indistinct and overwhelming. Friends may see me and think, "She’s ok," but they don’t see that the person they once knew has slipped away, inch by inch. It’s a strange grief - the grief of becoming someone you never chose to be. They say grief comes in stages, but chronic illness grief doesn’t fit that tidy model. It’s more like an endless cycle, relentless and raw, circling and returning, hitting you when you least expect it.

Pain also changes how people see us, often in ways we can’t control. Society is not kind to chronic pain; it prefers resilience, stoicism, recovery. The invisible suffering of chronic illness can make us feel like ghosts, hovering between the life we had and a world that’s moved on. I feel sorry I’ve lost my old self, my dreams, the life I wanted to live. And it’s easy to wonder if society pities us too. Some call it “playing the victim,” but we know differently. It’s not about wallowing; it’s about survival.

People talk about adapting as if that’s a simple task. But adapting takes energy, patience, and support that’s often lacking. On the hard days, when the pain is unbearable and Parkinson’s is at its worst, I feel trapped by my own body, which once did so much for me. And yet, I am asked to adapt again and again, to accept the unpredictability of this disease and the limitations it imposes.

The nature of Parkinson’s is cruel because what worked yesterday may not work today. I might be able to walk one day and struggle to stand the next. It may look inconsistent or erratic, but for me, it’s a quiet, daily betrayal. This lack of predictability isolates you even more because while pain and illness may not have intent, they feel personal. The loneliness of chronic pain is deep and silent, a constant companion that few understand and few still acknowledge.

Science tells us to view pain and illness rationally, to see it clinically. Parkinson’s is not “out to get me”; it just is. But no amount of logical thinking changes how it feels. Chronic illness feels relentless, like a dark presence lurking and waiting, ready to take a little more each day.

And so, the grief continues—sometimes sharp, sometimes a dull ache. With chronic illness, we’re constantly letting go of what we once were, forced to declutter our lives and our expectations. This isn’t a grief that ends or resolves. It lingers, because as the illness progresses, so does the loss. Each decline is a new reminder that life is slipping further from what it once was. It’s not that we want to live in the past, but there’s a part of us that misses it, that grieves the parts of life that can never return.

Chronic pain and illness are difficult for others to see and that invisibility creates a unique isolation. We lose parts of ourselves in the haze of pain, in the struggle to keep up with who we once were. But perhaps there’s a way forward a way to build a new self from the pieces that remain. It may not be the self we had, but it’s still a self—a new identity to shape and protect, a chance to reclaim whatever small sense of “I” still lingers in the fog.

Parkinson’s wants to mess with us, we might as well swear at the absurdity of it. Some days, it’s getting through the day without tripping over our feet or remembering where we put our coffee (again).

Chronic pain might try to steal the show, but I'm still one stubborn mother fucker and refuse to give in...just yet!

As ever, thank you for letting me in your inbox.

with love

E xxx