Dear people who think we make chronic illness our whole personality
I can promise you this: most of us spend our lives trying to escape it.
People who live with chronic illness don't want to be known for it. We want careers, adventures, hobbies, relationships, goals, and plans. We want conversations that have nothing to do with doctors, medications, scans, or symptoms.
In fact, you'll often find that chronically ill people are some of the most determined people you'll ever meet. We become experts in perseverance because we don't have a choice.
And if you've met someone who seems defeated, someone who has stopped fighting, I can almost guarantee they didn't start that way. They were worn down. Crushed beneath years of trying. Suffocated by systems that demanded more evidence, more appointments, more patience, more resilience, while offering very little in return. They weren't lazy. They were exhausted.
I have seen five physiotherapists and completed every protocol they gave me. I fly interstate looking for answers. I consult doctors overseas looking for answers. And somehow, I'm one of the lucky ones. I know women who have travelled across the world searching for treatment and are still desperately unwell. Women who have lost careers they loved, relationships they treasured, homes they worked hard for, and every cent in their bank account chasing the possibility of getting their life back. The reality is that medicine is not yet where it needs to be for some of us.
If you've never experienced that feeling, genuinely, I'm happy for you.
But please don't shame your sick friend for talking about their health too much. Don't accuse people of making illness their identity because they share their story online. Don't roll your eyes when someone's world seems to revolve around doctors and symptoms. Don't mistake survival for obsession. When your body becomes the thing standing between you and every dream you have, it's impossible not to talk about it.
If people with chronic illness were granted one wish… It wouldn't be more money. It wouldn't be fame, success, or a winning lottery ticket.
It would be waking up tomorrow in a body that no longer hurt.
A body that lets us make plans without wondering if we'll have to cancel them. A body that doesn't need to be managed, negotiated with, monitored, researched, accommodated, or fought every single day. Because despite what some people think, we are not desperate to make illness our identity.
We're desperate to get our lives back.
We're desperate to spend our time building careers, raising families, travelling, creating, laughing, dreaming, and making plans that don't have an asterisk attached to them. The greatest misconception about chronic illness is that people become attached to it. Most of us spend every day trying to leave it behind.
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