Living with a Dynamic Disability: Navigating an Unpredictable Body
By
Rhiann Johns
A baker's-dozen of insight crammed into one ring.
Summary
A personal narrative about living with a dynamic disability — a condition where symptoms fluctuate unpredictably day-to-day. The author describes the daily ritual of waking up and assessing their body's state, navigating mobility aids, dealing with imposter syndrome (feeling "not disabled enough" on good days), and the emotional toll of an unpredictable body. The piece explores the gap between how disability is often perceived (static and visible) versus the reality of fluctuating, invisible symptoms. It emphasizes resilience, self-advocacy, and the need for broader understanding of dynamic disabilities.
Key quotes
· 5 pulledLiving with a dynamic disability means every day starts with a careful negotiation with a body that doesn't always tell the truth.
On good days, I feel like a fraud — like I've been caught pretending to be sick. On bad days, I feel like I'm drowning in a body that has betrayed me.
The hardest part isn't the pain. It's the unpredictability. Never knowing which version of myself I'll wake up to.
I've learned that using a mobility aid on a good day isn't 'giving in' — it's giving myself the freedom to enjoy that day instead of saving my energy for survival.
We need to stop thinking of disability as a fixed state and start understanding it as something that can ebb and flow, like the tide.
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