My chest aches to click and step through to his world and pretend for one moment that I’m there, with him. But I’m not there. I’m here – Alice. In this room and in this bed.

It’s time for the world to know that I’m just as much Alive as anyone.

And it’s time for me to know that, too.

I click on the camera icon in the top right. My own face flashes up, caught in a tumbling sea. And I can already see the chat waiting.

You’ve got this, Alice.

Can’t waaaaait.

Omg I need this in my life already.

The clock ticks down. I watch myself panic.

But it’s time now. It’s time to step back inside those windows. And open one of my own.

I take a deep breath.

I hit the green button.

And I smile into the world watching, live.

‘Hello,’ I say. ‘I am here.’

And now I am Alice.

And I am Alive.

Author’s Note

Alice is one of an estimated fifteen million people living with a chronic illness in the UK.

Some of these illnesses can be diagnosed and treated. Other illnesses – like the one Alice has – are trickier. Little is understood about why they start, how best to treat them, and how they differ from one person to the next. Some people even have to fight to be believed that they have an illness at all.

Not everyone with these illnesses will look like Alice. Some could make it to Cecelia’s party, but then be unable to get out of bed the next day. A spoon for Alice might be a conversation, but, for someone else, it could be the walk to school.

These illnesses are invisible and can affect people in different ways – and even the same person in different ways from day to day. Some people fully recover, but others have to find new ways to live around their illness.

It can be difficult for a heathy person to fully appreciate just how an illness like this can impact all parts of someone’s life. But we can listen. We can keep turning up, even when they can’t make it out. And if we see someone sitting on a priority seat in a packed train, or using a disabled toilet when they might appear to have infinite spoons, we can realize that – just maybe – they might need it.

This story was inspired by real people’s lives – particularly the one I care for in my own home. To find out more, I strongly recommend you watch Jennifer Brea’s documentary film Unrest on Netflix, read the haunting memoir A Girl Behind Dark Glasses by Jessica Taylor-Bearman, or speak to your friends who have invisible illnesses.

Thank you so much for reading.

Acknowledgements