I Have Something To Say

It’s hard to sit by and not use my voice when I see what’s happening around me. For years, I’ve tried to stay quiet. I’ve tried to focus on surviving, on figuring things out, on getting better. But when the very system meant to support people like me is being gutted before our eyes, I can’t stay silent anymore.

This isn’t just political to me—it’s personal. It’s my life.

I want to share my story, not because I want pity or attention, but because I need people to understand what it's really like to be disabled in the UK today. I hope my words reach people who may not know how broken things are, and that they help others who are struggling to feel less alone.

Living with Functional Neurological Disorder

I have a condition called Functional Neurological Disorder (FND). For those who haven’t heard of it—because let’s be honest, most people haven’t—it’s a complex condition that affects the way the brain sends and receives signals. It’s like having faulty wiring in a computer: the hardware might be fine, but the system doesn’t communicate properly.

FND can mimic many other neurological conditions, including epilepsy, Parkinson’s, or multiple sclerosis. In my case, my main symptoms include seizures (non-epileptic but just as real), dystonia (painful muscle spasms and abnormal postures), paralysis, and brain fog so intense I sometimes forget basic words or lose track of what I’m doing in the middle of a task. My symptoms can vary day to day, hour to hour. Some days, I can walk. Other days, I can’t move my legs at all. Some days, I can hold a conversation. Others, I struggle to form a sentence.

There’s no cure. Treatment focuses on managing symptoms, therapy, and trying to retrain the brain—but success varies wildly. It’s an invisible illness to many, but it governs every aspect of my life.

Now imagine trying to hold down a job with that.

The Myth of “Fit for Work”

I’ve been told many times by doctors, therapists, and specialists that working could help me. And I agree—mentally, emotionally, and financially, I *want* to work. I crave the structure, the purpose, the sense of independence that comes from earning your own way. I don’t want to rely on benefits. I’ve never met a disabled person who does.

But wanting to work and being *able* to work are not the same.

You might think: “Well, can’t you just work from home?” That was my first thought too. So I tried. I applied for remote jobs, took interviews, explained my condition openly. I thought transparency would help employers understand what I needed. I made it clear I was committed, that I wanted to contribute.

But time after time, once the seizures started or the brain fog interfered, I was dismissed. One company let me go during my probation period without warning. Another offered flexibility, only to withdraw it as soon as I needed it. Even when I pushed myself far beyond what was healthy just to prove I could keep up, it was never enough. My productivity dropped, and I was seen as a liability.

I had one job where, during the process of trying to figure out what was happening to me medically, I had to fight tooth and nail just to keep showing up. My boss wouldn’t allow it. They didn’t understand the inconsistency of my symptoms. I wasn’t “disabled enough” to be excused from work, but I also wasn’t “healthy enough” to keep my job.

That’s the impossible position many of us live in: too sick to work, too “well” to be helped.

The System Was Never Built for Us

While all this was happening, I tried to access support through the UK benefits system. I thought, naively, that the process would be fair. That I’d explain my condition, provide medical evidence, and be assessed accordingly.

Instead, I was told I was “fit for work.”

I was sanctioned by the Department for Work and Pensions (DWP) for not attending work—even though my employer wouldn’t let me in the building. I provided letters from my GP, from occupational health professionals, even from my employers explaining the situation. It didn’t matter.

The system is designed to believe you’re lying.

It operates on suspicion and box-ticking, not empathy or understanding. You’re assessed by people who have never heard of your condition. Your symptoms are judged based on a half-hour meeting or a questionnaire that doesn’t allow for nuance. If you can raise your arm or walk a few steps, that’s seen as proof you can work. They don’t ask what happens *after* you do those things—like collapsing from exhaustion, triggering a seizure, or spending days recovering.

For five years, I fought to survive. I starved. I lost my home. I went into over £10,000 of debt. I lost everything—my sense of security, my independence, my hope. It took five years for the benefit system to finally acknowledge my condition and provide help.

Now, that help is under threat.

The New Wave of Cuts

The government is proposing sweeping changes to disability benefits, including tighter eligibility criteria and a renewed focus on getting people “back into work.” On paper, it sounds fair—no one should be written off. Everyone deserves the chance to work if they want to.

But that’s not what’s happening.

Instead of supporting disabled people into meaningful employment, the system is coercing us into impossible situations. There are no safeguards, no tailored support systems, no protections for disabled employees. Employers aren’t incentivized to hire us. Accommodations are treated as burdens. And when we inevitably struggle, we’re discarded.

All the while, the benefits we rely on to survive—because we cannot work—are being stripped away under the guise of “fairness.”

This isn’t just bad policy. It’s cruelty.

The Human Cost

What does it mean to take benefits away from people like me?

It means more people will go hungry. More people will become homeless. More people will fall into debt, into despair, into dangerous health situations. It means pushing vulnerable people to the brink—all because the government refuses to accept that some people cannot work, no matter how much they want to.

I’ve met others in the disabled community with similar stories. People with invisible illnesses, rare conditions, or complex needs who’ve been failed by the system again and again. We share resources. We comfort each other. We try to survive.

But we shouldn’t have to do it alone.

What Real Support Would Look Like

I’m not against encouraging disabled people into work—if it’s done with compassion, flexibility, and support. But that’s not what we’re seeing. If the government truly cared about helping people like me into employment, here’s what they’d do:

- Enforce employment protections: Make it illegal for companies to discriminate against or dismiss disabled workers without just cause. Create real consequences for noncompliance.

- Offer financial incentives for companies to hire disabled people and make reasonable accommodations.

- Fund specialist job coaching, occupational therapy, and mental health support for those transitioning into work.

- Develop flexible benefit structures that don’t punish people for trying to work part-time, sporadically, or in adapted roles.

- Include disabled people in the policy-making process. We know what we need. Stop making decisions without us.

Without these changes, the push to get people “back to work” is just another form of punishment.

I Still Have Hope

Despite everything, I still have hope. I believe most people are kind. I believe that if more people understood what was happening, they’d speak out too. That’s why I’m writing this.

I’m tired of feeling ashamed for being disabled. I’m tired of having to prove my worth, my honesty, my struggle. I’m tired of being told I’m “not trying hard enough” when I’ve already given everything I have.

I want to work. I want to contribute. But I also want to live. I want a system that values me as a person—not just as a number on a spreadsheet.

To Those Who Read This

If you’ve made it this far—thank you. Thank you for taking the time to understand a reality that may be different from your own. Thank you for seeing me.

I ask you to do one thing: speak up.

Whether it’s writing to your MP, signing petitions, voting with disabled people in mind, or just sharing stories like mine—your voice matters. Disabled people make up nearly one in five of the UK population. We are your neighbours, your colleagues, your family members. We deserve to be heard. We deserve to be protected.

The system might be broken—but together, we can demand something better.