Invisible Lives

Where Emma rages at the system

Hello my lovelies all the new faces here. Bit of a rant one this week! If you want something more lighthearted there’s always X - hahahah. Thank you as ever for all the support!

There’s a story we like to tell ourselves about control. If we can name the threat, we can conquer it. Snake bites? Grab a club. Illness? Diagnose it, treat it, move on. This instinct to categorise and contain is ancient, perhaps even primal. Science gives us the tools to refine it, pinning down disease with tests and scans, dissecting the body’s failures under the cold gaze of logic. But what happens when the threat isn’t a single moment, a snake to strike down? What happens when it stretches across years, seeping into every corner of life, reshaping identity, eroding dignity?

This is what it feels like to live with Parkinson’s.

I lost time before I even knew what was happening. Years slipped through my fingers as my body changed in ways I couldn’t comprehend. I stumbled down stairs, struggled to keep up with life’s demands, and watched the person I had been—sharp, capable, present—fade into the distance. A stranger took her place, someone slower, someone perpetually tired, someone who couldn’t absorb the knocks of life as easily. I spent years trying to figure out who this new Emma was. She wasn’t the woman I had known, and yet she was the one I woke up with every day.

Time blurred. Days stretched and shrank, irrelevant and distorted. It felt like grief. And in many ways, it was.

Grief is often described as a series of stages, a linear path leading toward acceptance. But when the loss is chronic—when it is your own body betraying you—grief is not a straight line. It circles, an ever-present shadow. Some days, I escape its grasp, conquering small obstacles and finding moments of peace. Other days, I am swallowed whole by the weight of what I’ve lost. The cruelty of Parkinson’s is that it doesn’t settle. What is manageable today might be impossible tomorrow. Progress feels fleeting, and hope is a fragile thing.

Society, too, is quick to push us into the shadows. It’s convenient to view people with chronic illness as fading, as somehow ‘less alive.’ We become invisible, little ghosts haunting a world that no longer sees us. But we are here. We are not gone. And we are not without purpose.

The narrative that disabled or chronically ill people don’t want to work, that we are content to languish on benefits, is a damaging and dehumanising myth. We are not idle. We are not without ambition or drive. We want to contribute, to participate, to be part of a society that values our skills, our experiences, our perspectives. But the structures of work are built for the able-bodied, with little room for adaptation or flexibility.

We are expected to fit into systems that were never designed with us in mind. And when we can’t? We are discarded. Seen as burdens. Penalised.The UK government’s proposed cuts to disability benefits perpetuate this narrative of blame. They tell us that if we are not working, it is a failure of will, a lack of effort. But the truth is far more complex. We are not asking for handouts—we are asking for a society that acknowledges the realities of living with disability. A society that makes space for us, that values what we bring, and that adapts its systems to meet our needs.

We want to work, but on terms that respect our bodies and our limits. We want to contribute without sacrificing what little health we have left. We want to live with dignity, not as objects of pity or scorn.

Parkinson’s—and any chronic illness—feels like an invasion. It is a force that alters everything, yet it moves slowly, stealthily. You don’t wake up one day and realise you’re disabled. It happens in increments, so small that you don’t even notice until years have passed and you no longer recognise the person in the mirror.

This slow erosion is what society fails to grasp. The loss is not just physical. It’s the loss of identity, of certainty, of belonging. It’s the grief of becoming a stranger to yourself. And when that grief is met with a system that punishes you for not ‘overcoming’ it fast enough, it compounds the loss.

There’s another cruelty in this experience—self-pity. The phrase itself is laced with judgment, implying weakness, indulgence, even manipulation. Society is quick to dismiss those who dwell in grief, who mourn the life they’ve lost. But what if self-pity is not a flaw, but a necessary act of survival? What if it is the only space where we are allowed to fully acknowledge the magnitude of our loss?

I feel pity for what I have lost. For the parent, the partner, the friend I had hoped to be. For the life that slipped through my hands without me even realising it was gone. That grief, that pity, is not weakness. It is truth. And it deserves to be honoured, not shamed.

What we need is not judgment, not punishment, but compassion. A society that values its disabled and chronically ill members is a society that thrives. When we are supported, when systems are built to include us rather than exclude us, we can contribute in meaningful and powerful ways. But when we are cut off, when benefits are slashed and support is denied, we are left stranded—fighting not just our own bodies, but a world that refuses to see us.

Grief never fully leaves those who live with chronic illness. Like an involuntary declutter, it strips us bare, leaving us to navigate the vast, unfamiliar space that remains. Over time, we fill that space with new skills, new hopes, and new ways of being. But we never forget what was lost.

The UK’s proposed benefit cuts threaten to strip away even that hard-won space, leaving us to fight for survival in a system that sees us as expendable. We deserve better. We deserve a society that recognises our worth, that adapts to our needs, and that refuses to let us disappear into the margins.

We are not ghosts. We are here. And we are fighting to be seen.

with love

E xxx