When I was first diagnosed with Myalgic Encephalomyelitis in 2012, I still had a version of my life. A slower one, a changed one—but mine, nonetheless.
I was one of the “lucky” ones.
Even though my referral to the ME team in Liverpool was lost, and then further delayed by budget cuts, I eventually saw someone. I had a healthcare professional who listened, I was referred to occupational health, and my home began to be adapted for my new needs. A second bannister for the stairs, a shower stool, a toilet surround, and a wheelchair. These things made the difference between surviving and living.
But I’ve come to realise just how rare that support is.
Since starting my online community work, I’ve spoken to hundreds of people living with ME, both across the UK and around the world. Many of them have no occupational health support. No mobility aids. No adaptations. Some don’t even have a GP who understands what ME is.
Then came the pandemic. And with it, a rise in Long Covid—bringing symptoms that mirror ME in frighteningly familiar ways. For a moment, it seemed like the world was finally ready to listen. Funding appeared. Committees were formed. “Plans” were announced.
But here’s the hard truth:
A plan isn’t enough when people are still being dismissed. A plan isn’t enough when people are left suffering without support. A plan isn’t enough when lives are already lost.
Every single day, I’m in severe pain. Morphine helps. Sometimes it doesn’t. On those days, I have to take Oramorph for breakthrough pain relief just to make it through the afternoon. I rely on mobility aids to move around my own home, on good days.
And yet, even through this, I fight.
I fight to stay connected. I fight to find meaning. I fight to make a difference—because that’s all I have left to give.
The community we are building—through blog posts, Zoom calls, social media, and meet-ups—it’s become the heartbeat of my life. It’s a life I never chose, shaped by an illness that stole so much. But it’s still a life. And it’s still mine.
🎥 My YouTube Channel: Where Real Life Meets Real Connection
Over the last ten years, while my body has been failing me, I’ve poured everything I had into keeping my mind alive. I taught myself video editing, graphic design, SEO, and even bought a drone. I’m still learning how to talk confidently to a camera, but behind the scenes, I’ve found a quiet joy in creating.
One of the biggest sources of that joy? My two beautiful Black Labradors, Alfie and Archie.
They are the heart of my world.
I love documenting their lives—whether it’s Christmas morning as they rip open their presents with unfiltered joy, or quiet everyday moments that speak volumes. They are raw, real, and unapologetically themselves… and that’s exactly the kind of energy I want this channel to reflect.
This isn’t a polished studio production. It’s a real life—messy, honest, loving.
It’s a space where vulnerability is welcomed, where disabilities aren’t hidden, and where connection means everything.
Every single person who watches, comments, or subscribes is helping to build something powerful.
You’re helping make disabled voices visible. You’re helping create a space for laughter, for community, and for showing up, just as you are.
So, whether you live with ME, care for someone who does, love dogs, or just want to feel less alone, I’d love to welcome you to our community.
👉 Subscribe here: https://www.youtube.com/@AlishaWhittam
Your support means the world—and together, we’re making something that matters. 🫶
The Bottom Line
The government says it has a plan. But we—those of us who live with ME every day—we’re already living the consequences of years without one.
It’s not enough to promise action. We need change. We need compassion. We need community.
And until that day comes, I’ll keep fighting. For myself. For you. For all of us who’ve been left behind.
🫶 With love and strength,
Alisha
