You want to know what’s exhausting? It’s not just managing a disability—it’s the financial avalanche that comes with it.

Every year, I spend over £12,000 more just to exist. That’s not for luxury, or holidays, or anything fancy. That’s bills. Travel. Essential equipment. Care. Heating because my body doesn’t regulate temperature like everyone else’s. Taxis because public transport isn’t actually accessible, no matter how many ramps they install.

I didn’t choose this life. But I choose to live it with dignity—and the system doesn’t make that easy.

Imagine budgeting your groceries while deciding whether you can afford to pay for mobility aids. Or having to skip social events because paying for an accessible cab would blow your weekly budget. That’s my normal.

I work. I contribute. I pay taxes. And yet I constantly feel like I’m being financially penalised for something I didn’t choose.

This isn’t about pity—it’s about fairness.

Being disabled shouldn’t cost extra.

But it does. And the worst part? It’s invisible to most people.

When I tell people that my disability costs me an additional £12,000 a year, they stare at me like I’m speaking a different language. “Isn’t that what insurance is for?” they ask, or “Have you looked into government assistance?” as if they believe that some magical form of help will swoop in and fix everything.

But the reality is that no amount of insurance or assistance comes close to covering the costs. I’ve had to fight for every penny of help, and even then, it’s a drop in the ocean compared to what I spend just to get through the day.

The wheelchair? It costs thousands. The wheelchair lift for my house? A small fortune. And that’s not even considering the care I need—someone to help me with the things that I can’t do on my own. Every month, I pay for extra care just so I can manage basic tasks like cooking and cleaning.

And let’s not even get started on the travel. My local buses might have ramps, but those buses are often late or full, or sometimes, there’s no driver who knows how to properly assist me. So, I end up taking a taxi to places I need to go—appointments, grocery shopping, meetings. It adds up fast.

The real kicker, though, is the isolation. It’s not just the physical exhaustion of managing a disability—it’s the mental toll. I can’t just go to the pub with friends or pop out for a spontaneous trip to the beach because it’s simply too expensive to make those things happen. When I do make it out, I have to plan for weeks, saving up just to cover the costs. Even then, I have to weigh the decision against other needs—like food or medicine or heating.

And yes, I get the occasional “Well, you get benefits, don’t you?” from people who don’t understand how little those benefits actually cover. The benefits aren’t enough to cover the added costs, and there’s always some kind of red tape or paperwork I have to deal with to make sure I’m getting what I’m entitled to. It’s exhausting.

But recently, something shifted. After years of silently struggling, I reached a point where I couldn’t take it anymore. I decided to speak up. And not just to vent to my friends and family, but to really speak up. I started to reach out to organizations, attend rallies, and share my story with anyone who would listen.

And to my surprise, people started to listen.

The turning point came when I shared my story at a local town hall. The mayor was there, and I didn’t expect much—but after I spoke, she pulled me aside and said something that changed everything: “You’re not alone in this. And we need to do more. This issue needs more attention.”

From there, things started to snowball. The local news caught wind of my story, and suddenly, it wasn’t just my problem—it was a bigger issue that people started talking about. More people came forward, sharing their own experiences of the financial struggles that come with disability.

And then, the biggest surprise of all happened. A small group of local business owners, who were inspired by the stories they’d heard, began offering discounted or even free services to people with disabilities. A local taxi service offered a discounted fare for people with mobility challenges. A grocery store started delivering to my house for no extra charge.

And the most incredible thing? I found a community of people who understood. We started a group, a support network for people with disabilities, and began advocating for systemic changes—things like better transport accessibility, more affordable medical supplies, and financial support that actually covers the real cost of living with a disability.

It felt like for the first time, my voice was being heard. The people I spoke to didn’t just listen—they acted. And together, we made progress. It wasn’t easy, and there were setbacks along the way, but I started to see the change happening.

The best part of all of this? I realized something important about myself. I had spent so long feeling like I was just existing, getting by day to day, making do with what I had. But when I started speaking up, when I started demanding fairness, I found my power. I realized I could be a part of the solution, not just someone who had to endure the problem.

Yes, the financial strain of being disabled is still there. The extra £12,000 a year is still a reality for me. But the difference now is that I don’t feel alone. I don’t feel like I’m being quietly punished for something I didn’t choose. And I have a community—real people who support each other, who share resources, who understand the struggles we face and are willing to stand up for change.

And the karma in all of this? It’s the sense of justice that comes from speaking out, from turning my struggles into a force for good. It’s not just about what I’ve gained—it’s about what we’ve all gained by coming together and pushing for a world that’s more accessible, more fair, and more compassionate.

Now, when I look back at the woman who used to feel invisible, buried under the weight of her bills and isolation, I see someone stronger. Someone who not only fought for herself but also fought for others who were in the same position. I realized that even in the toughest circumstances, we have the ability to change things—both for ourselves and for the people who come after us.

So, my message to anyone reading this is simple: If you’re struggling, if you’re feeling like the world is too heavy to bear, speak up. Don’t let the system make you feel small. You have the power to make a difference—not just in your own life, but in the lives of others. Together, we can push for change. Together, we can make sure that the world we live in is a world that treats everyone with fairness and dignity.

Thank you for reading. If you know someone who might need to hear this message, share it with them. Let’s spread hope and create a world where no one is left behind. And remember, sometimes, the first step towards change is simply sharing your story.