Can You Imagine Life in Just Four Walls?
Have you ever imagined what it would be like to lie in bed, day after day, with nothing but the same four walls for company?
Most of us could handle a week — maybe even a month — if we had to. We’ve all experienced something close to it during lockdown: isolation, the lack of physical contact, and the grief of lost routines. But for most people, it was temporary. For people like me — and millions around the world living with chronic illness or disability — this isolation is permanent.
When Illness Replaces Normal Life
Imagine enduring this life of solitude without the buffer of good health. Imagine that even your loved ones can’t be there all the time because they’re working or carrying responsibilities you once shared. Now imagine trying to explain this pain, this isolation, to someone who simply can’t see it.
Sleepless Nights and Blackouts
Last night, pain kept me awake. I often fall asleep from pure exhaustion, but not always. Some nights, I’m so tired that my body trembles with fatigue — yet sleep won’t come. It’s as if I’m too exhausted to fall asleep, too depleted even to rest. My brain buzzes, my body aches, but I just lie there, suspended in a kind of cruel limbo where rest is needed most and feels furthest away. Some nights, like last night, I lie curled on my left side watching funny clips on YouTube just to distract my mind from the relentless pain.
I lose control of my body during these times. I might be reading, watching TV, or reaching for a drink — and then, without warning, I black out. Not sleep. A full-body shutdown.
I’ve spilled drinks, dropped my phone, and woken up to the credits of shows I didn’t remember starting. These blackouts have caused accidents: once smashing my head into the bathroom sink, another time waking up with the corner of the bedside table jammed into my eye socket. It terrifies me.
The Loneliness No One Sees
I feel abandoned. I know I have a husband and daughter who care for me deeply, but even with their support, I still feel painfully alone. I can’t always talk to them. My husband worries too much. My daughter is still young. So I keep it inside.
I scratch my skin until it bleeds. Not because I want to, but because it’s something I can control when my pain becomes unbearable. Then I pick at the scab the next time it gets bad. It’s a cycle — physical pain giving way to emotional pain, which turns into more physical pain.
From the outside, it might look like I’m surrounded by support. But inside, it feels like I’m standing alone in a crowded room, screaming — and no one can hear me. No one sees me.
What It’s Like to Live With ME
I never want anyone else to feel this way. Yet every week I hear from others who do. People with ME who are told they’re exaggerating, attention-seeking, or just suffering from mental health issues. ME causes very real pain — the kind of pain that fogs your thoughts, steals your days, and makes waking up feel like punishment.
Fighting to Be Believed
Our society is full of people who are fighting invisible battles. Some are dying. Some are undergoing endless rounds of treatment. Some are struggling with their mental health. And yet, so many still have to fight just to be believed.
The UK benefits system is hard enough to navigate when you’re healthy, let alone when you’re housebound. I’ve seen people torn apart by it — and I’ve somehow managed to be approved. They’ve told me I’ll never recover from this. That this is my life now.
My Reality, Ten Years On
It’s been nearly ten years since I became bedbound, lying on the left side of our bed in our white bedroom by the window. Most days, I can’t even manage the eight steps to the bathroom. When I can, I have to scoot to the end of the bed, use the frame to pull myself up, then lean on the door, the sink — whatever I can — just to get there. And still, I sometimes don’t have the energy to actually go to the toilet once I arrive.
This is my reality.
Why I Keep Going
And still, I made a vow: if I had to live like this, I would do whatever I could to make a difference. I still believe that.
The Words I Can’t Forget
So I’ll end with a thought I haven’t been able to stop thinking about:
People make time for who they want to make time for.
People reply to those they want to talk to.
Never believe anyone who says they’ve been too busy.
If they wanted to be there, they would be
Love always
Alisha 🫶🏻
