My first thought this morning

Notes on 'invisible illness' and being disabled

My body is a prison.

My pain an unrelenting guard dictating where I can go and what I can wear: punishing me if I overstep my bounds.

My mind an inescapable security system keeping me trapped inside a never ending suffering, with no chance of parole.

These are the words that first entered my mind this morning when I woke up in pain, as usual.

My head felt like it was being squeezed in a vice, ready to explode at any moment. A new pain in my shoulder and sternum pierced through my thoughts: is this a new symptom or just a random twinge that’ll fade?

I’ve tried changing my pillows, gaslighting myself into thinking there isn’t anything wrong with my body and that there must in fact be a simple solution to this everyday pain. Because surely this can’t just be my life now? Surely I’m not going to wake up feeling this way everyday for the rest of my life? That’s so unfair, I did everything right, how dare my body betray me like this. Maybe if I exercise more or change my diet or drink more water I can fix it. What’s the point of existing in this state of ongoing suffering? I’m just a burden to everyone around me. I am disabled, that can’t be changed, I need accommodations the same way a person with a broken leg needs crutches. But maybe I’ll get better…

And so I cycle through the phases of grief: a never ending circle of denial, anger, bargaining, depression, acceptance, every single fucking morning. Trapped in this loop of internalised ableism. Never quite fully accepting I am disabled and this is my life.

I am proud to be disabled. And it also sucks.

I am passionate about advocating for my community. And it’s also exhausting.

I am grateful for my life. And sometimes I don’t want to be in it anymore.

Being disabled is such a complex, nuanced experience.