The Community That Changed Everything!

Finding the disabled and spoonie community was like discovering a whole new world.. one where people didn’t just believe you, they lived it too. I’ve made lifelong friends, people who aren’t just friends but family, my chosen family.

The biggest thing I’ve learned? Sometimes, no one can fix what we’re going through.. but having people who understand makes all the difference. Even when others can’t physically help, just knowing they’re there to listen, to support, to remind you that you’re not alone… that’s powerful. Because in this community, we don’t always need solutions. Sometimes, we just need someone to say, “I see you. I get it. I’m here.”

It’s like an unspoken agreement.. we show up for each other, even when we can’t physically be there. Whether it’s a message on a bad day, a shared joke when we need a laugh, or just someone saying, “Hey, I believe you,”.. those moments matter more than words can explain. Because when the world doesn’t understand, when even doctors don’t listen, we do.

Beyond that, this community has given me knowledge, advice, and insights that no doctor ever did. It’s one thing to read about a condition in a medical textbook.. it’s another to hear from someone living with it, someone who knows the reality of navigating life in a body that doesn’t always cooperate. The things I’ve learned from others in this space.. tips, tricks, ways to make life even slightly easier.. are things I never would have found on my own.

And the best part? No one here expects you to be “strong” all the time. There’s no shame in saying, “I’m struggling.” No guilt in admitting you need help, whether it’s practical advice or just someone to sit with you in the hard moments. Because that’s what this community does.. we hold each other up.

We may not be able to take each other’s pain away, but we can remind each other that we don’t have to face it alone. And sometimes, that’s enough to keep going.

For the longest time, I thought advocating meant standing on a stage with a megaphone, shouting about injustice. But I’ve learned that advocacy comes in many forms.. it’s in the conversations we have, the stories we share, the way we refuse to shrink ourselves to make others comfortable.

I advocate because I know what it feels like to be dismissed, unheard, and underestimated. I know what it’s like to sit in a doctor’s office, explaining the same symptoms over and over, only to be told, “It’s not that bad,” or “Just try harder.” I know what it’s like to feel like a burden, to feel invisible, to wonder if maybe.. just maybe.. the world wasn’t built for people like me.

And I know I’m not alone in that.

That’s why I speak up.. not for sympathy, not for attention, but because someone out there is still where I used to be. Someone is still fighting for a diagnosis, still being ignored, still feeling like they’re the problem instead of the system that fails them. If sharing my story helps even one person feel less alone, if it gives them the confidence to push for the care they deserve, then it’s worth every uncomfortable conversation.

We aren’t obstacles. The real obstacles are the attitudes, the inaccessibility, and the ignorance that make life harder than it needs to be. Society is built around an idea of “normal” that excludes so many of us, but that doesn’t mean we’re the ones who need to change.. it means the world needs to do better.

And that’s why I keep going. Because disabled voices matter. Because we deserve to be seen, heard, and valued. Because we deserve the same chances to live full, joyful, unapologetic lives.

Because we are not the problem.. society’s failure to include us is.

** source - office for national statistics (records 2022/2023)

Although the world is split into its own various communities.. each with unique challenges.. there is one thing they all have in common: a disabled community. Across the globe, every community has its disabled members, and we share a lot more in common than we might think. We all deserve equal opportunities, access, and support, and it’s time we start looking out for each other in every community, no matter how different we seem.

In the UK, there are approximately 14 million people living with a disability, which is roughly 22% of the population. Of those, many face severe challenges just trying to navigate everyday life. 1.2 million people in the UK are unable to access the support they need due to lack of funding or available services. Around 4 million people with disabilities in the UK live in significant financial hardship due to lack of resources or access to necessary support.

Globally, over 1 billion people live with some form of disability, which is about 15% of the world’s population. Despite the size of this community, disabled people often face systemic exclusion. Whether it’s inaccessible infrastructure, educational barriers, or healthcare systems that fail to meet their needs, the disabled community is continually overlooked. And up to 75% of disabled people in developing countries lack access to the medical care and treatment they need to live well.

But as incredible as our community is, we still face barriers at every turn. Accessibility? Still an afterthought. Employment? Good luck convincing companies we’re just as capable with the right accommodations. Medical care? A nightmare, especially outside the UK, where insurance decides if you’re “worth” treating. Social life? Often dictated by how accessible a venue is (spoiler: it usually isn’t).

And then there’s the everyday ignorance.. the comments, the stares, the unsolicited “Have you tried yoga?” advice. (Seriously, if yoga cured chronic illness, we’d all be doing headstands by now.)

But the biggest barrier? A society that still doesn’t see us.

Even though each of us faces unique challenges, there’s something incredibly powerful about how we come together as a community. We might each have different struggles.. whether it’s with mobility, chronic illness, mental health, or accessibility.. but we share a common understanding that makes us stronger. When one of us finds something that works, whether it’s a new treatment, a helpful tip, or a piece of equipment, we don’t keep it to ourselves. We share it, we explore it together, and we help others find solutions that could improve their lives too. It’s not about competition or comparison; it’s about lifting each other up, offering advice, and celebrating every small victory. The disabled community is a network of strength, a place where empathy, kindness, and support are the foundation of everything we do.

Here’s the reality: disabled people aren’t rare. We’re not a small, niche group that can be ignored. We make up a huge part of the population, and yet, we’re still fighting for the basic right to exist comfortably in this world.

Disability isn’t something that happens to “other people.” It can happen to anyone at any time. And when it does, you’ll realize just how little support there really is.. until you find us.

Because we’re here. We’re advocating, we’re fighting, we’re supporting one another. And we’re not going anywhere.

So, if you’re struggling, if you feel lost, if you’re battling the system and don’t know where to turn.. know this: You are not alone! There’s an entire community ready to lift you up, to fight alongside you, to remind you that your voice matters, your life matters, you matter.

And together? We’re unstoppable.

Now I’ll be completely honest here… without this community, I’d be lost. Before I found this amazing, beautiful network, I was just going through the motions of life like my health didn’t matter. I took everything for granted. But then, as my health deteriorated rapidly, I became trapped.. not just in my home, but in my body too. I lost friends, I lost family, I even lost myself. But finding this community? That was the turning point. Every single day, new doors are opening, and I’m meeting more and more spoonies who get it, who get me.

Now, let’s get a little bit funny.. because let’s face it, who wouldn’t rather talk to someone who lives it, rather than search through Dr. Google? We all know Google loves to throw in a little extra anxiety with its overly dramatic diagnoses (thanks for that, Google, seriously). But in all honesty, if it weren’t for this community.. whether online or in real life.. I honestly don’t know where I’d be.

If you ever feel lost, or like you’re hitting a brick wall, reach out. Scroll through social media, post in a group, or just ask the person next to you who gets it. But I’ll leave the whole social media journey for another blog… (trust me, that’s a whole other story).

One voice might be missed, but all our voices together? We will be heard.