‘Grief And Confusion Clashed With Unconditional Love And Joy’: The Hidden Lives Of Young Carers



By Ellie Fry in The Independent.


Like many young carers, I can’t tell you the exact moment my mum got sick. Nor can I pinpoint the moment I started helping her and my family get through day-to-day life. But there was a moment, 10 years ago, when my mother went from healthy to bed bound. She spent weeks unable to move, struggling to even sip water or to stomach a slice of toast. That was when everything changed.

We now know that my mum has myalgic encephalomyelitis (ME), a chronic disease that impacts the body’s nervous and immune systems. Previously known as chronic fatigue syndrome, it is at least as disabling as multiple sclerosis and congestive heart failure – but there is currently no cure and reaching diagnosis is a battle. My mum can’t walk further than half a mile without crashing for days afterwards. On her best days, she is mostly housebound; even going for a walk is a distant dream. She spends her worst in bed, unable to stand any noise or light. ME can also impact her cognitive capabilities: her words can often become mixed up and slurred.


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