The Despair of Bad Pain Days:
The Despair of Bad Pain Days
Some days it feels like I’m being tossed around like a yo-yo. One moment I’m crushed by frustration, the ache of pain, and the creeping sense of uselessness. The next, I’m trying to claw my way back up with affirmations, telling myself to be kind, to be gentle, to hold myself the way I would hold anyone else who was suffering. It’s a constant back-and-forth, exhausting in its own right.
The truth is: my energy is low. And when your energy is so scarce, everything feels magnified. Every task on the list grows heavier, looming over you as if it’s urgent, as if not ticking it off makes you a failure. But when I take a step back, I see the truth more clearly.
Because I know where I’ve come from. I was once bedbound. Housebound. I spent over a decade within the same four walls, surviving days blurred with pain, surviving nights that felt endless. And even then, even when I was flat on my back in a hospital bed, I still tried to help others, to be there, to give what I could. That mattered.
And now? Now I can move, I can go out, I can do things I never thought possible again. I live. I laugh. I take part in life in ways I couldn’t before. That in itself is extraordinary—a feat that deserves recognition, not dismissal.
So why does my brain still attack me when I need to rest? Why does it make rescheduling or saying not today feel like a crushing failure? Why does it turn pacing myself—something essential to survival—into guilt and self-doubt?
The truth is, I don’t want to let anyone down. I want to show up for people. I want to pace better. But what I mostly need, and what so many people in my situation need, is patience. Understanding. Compassion.
Because it isn’t about laziness. It isn’t about not caring enough. It’s about living with limitations that are invisible to the eye but painfully real to the body. Some days we have to cancel. Some days we can’t do what we long to do. That doesn’t make us unreliable or unworthy—it makes us human, fighting battles most will never see.
If you want to support someone like me, here’s what helps: believe us when we say we’re in pain. Don’t make us feel guilty for needing to reschedule. Celebrate the small victories with us, because they’re not small to us. Be patient. Be kind. Offer understanding before judgement.
Because for those of us living with chronic illness, compassion isn’t just kindness—it’s survival.
Sarah Wingfield
Independent Disability Advocate
#disabilityinclusion #strongertogether #disability #disabilityawareness #disabilitysupport #disabilityrights #chronicpain
