I found them at the back of a cupboard last week. Pages and pages of them, tucked inside a folder I hadn’t opened in years. My son Alfie’s pacing sheets. He was twelve when he became bedbound with ME. Moderate to severe, which in practice meant he couldn’t be upright for more than a few…
I was seven years old the first time my body told me something was wrong and the world told me it wasn’t. This experience marked the beginning of a journey where I would discover how chronic illness dismantles your identity. Understanding how chronic illness dismantles your identity from an early age can shape your perspective…
Why Chronic Illness Makes Every Decision Feel So Hard Why does having chronic illness make every decision feel so hard? Not just the big ones – the career moves, the treatment choices, the conversations you’ve been putting off. The small ones too. Whether to accept an invitation. Whether to rest or push through. Whether to…
There’s a moment. You probably know the one. It’s Sunday evening and instead of feeling rested, you’re already dreading Monday. Or it’s Wednesday and you’ve hit a wall that used to only arrive on Friday. Or it’s somewhere quieter than that… a slow realisation that you can’t actually remember the last time you felt okay….
Managing chronic illness is often described as symptom management.Pain levels. Fatigue scores. Test results. Medication changes. But anyone living with a long-term health condition knows that symptom control is only part of effective chronic illness management. The real workload runs much deeper. Managing chronic illness affects how you work, live, interact, think and plan. It includes…
I recently attended an event on sex, confidence, and connection in relationships, including conversations about sexual motivation, intimacy and menopause. It has got me thinking… It reminded me how rarely we talk openly about intimacy and sex when you live with a chronic illness or disability, the challenges, yes, but also the resilience, humour, creativity, and deep connection…
Have you ever walked out of an appointment doubting your own body? That’s medical gaslighting.
Last night I was on the phone with a family member who just got some test results back. They were abnormal – which, as many of us with chronic illness know, isn’t always as helpful as it sounds. Blood tests don’t always diagnose what’s going on in your body, but they do offer clues. They’re…
The Waiting Game: When Life Feels Like an Auction You Can’t Control On Tuesday morning, my husband and I sat in front of our computer, hearts pounding, fingers hovering over the keyboard. We were bidding at an auction for a flat in the city where our son is studying at university. It was the perfect…
Introduction: Rethinking Disability When most people think about disability, they might picture wheelchairs, crutches, or canes. However, what many don’t realise is that a vast majority of disabled individuals live with invisible disabilities. In the UK, around 83% of the disabled population have conditions that are not immediately visible to the outside world. Only 8%…
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