Invisible Struggles, Real Impact: My Life With Disability
We’re grateful to a customer who has generously shared their personal experience of living with a disability. Their story provides an honest and powerful insight into the realities of fluctuating symptoms, the impact of chronic pain, and the essential role of compassion and understanding in everyday life. While compassion from others can sometimes feel hard to come by, offering that same compassion to yourself can be even more challenging.
'For me, living with a disability begins with compassion — something I’ve had to learn to give myself just as much as I hope to receive from others. Most people don’t see the constant mental calculations I make throughout the day: how much energy I have, which tasks I can manage, and what the payback will be later. Every movement, every errand, every “small” action has a cost.
I use a walking stick because I have balance issues and pain in my legs and feet, though even that comes with challenges. My arms and hands also have weakness and chronic pain, so holding the stick isn’t always easy. It’s something I rely on for safety, even if using it hurts.
What makes things harder is how disability is often judged by what people see in a moment. If a neighbour catches me walking a few steps without my stick, the looks can be sharp. What they don’t see is that disability fluctuates. Some days my symptoms overwhelm me; on rare better days, I might manage a small task more steadily. Neither moment tells the full story. Disability isn’t something you can measure by a glance on the street.
My symptoms stem from peripheral neuropathy that developed after having Covid in 2022. Adjusting to this new reality has been incredibly hard — learning to live with pain, adapting my home, and accepting the need for support, including having a carer. Losing independence is not something you simply “get used to”; it’s a process filled with grief, frustration, and slow acceptance.
That’s why compassion matters so deeply. It doesn’t have to be grand. It can be as simple as withholding judgment, offering patience, or remembering that someone’s struggles aren’t always visible. Small acts of understanding make a huge difference.'
If you would like to share your story with us, please email us: involvement@estuary.co.uk
I also work hard to stay as independent as I can, because dignity matters. Every small achievement — even if it costs me energy later — is something I’m proud of. And despite the pain, the fatigue, and the recovery time that follows, I still want to have adventures. I still want to experience life. I would rather grab those moments of joy and deal with the exhaustion afterwards than let disability shrink my world completely.
Living with a disability means constantly adapting, constantly negotiating with my own body, and constantly choosing to try again. It means balancing reality with hope and limitation with determination. Above all, it means needing compassion — from myself, and from those around me.