LESS than two years ago Hattie Hodgson-Crome was fit and active, leading a busy life with weekly ballet lessons.
Now exertion can leave the 26-year-old bedbound for days and struggling to perform the simplest of tasks.
Hattie suffers from ME a chronic neurological condition that affects around 250,000 men, women and children in the UK. The part time press officer with Yeadon-based Epilepsy Action has been speaking about her story as part of ME Awareness Month in May, in a bid to help tackle ignorance and shame surrounding the condition.
Many people with ME say they face isolation, stigma and discrimination as friends, family and even some professionals struggle to accept the true impact of the illness. Hattie says she was "fobbed off" by doctors and GPs for many years; it wasn’t until she was referred to a specialist that she finally got a diagnosis of ME.
"I was spending whole weeks in bed, and having so much time off work," she explains. "It felt like my body was fighting against me – my brain wanted to continue as my normal, busy, super-active self who did a lot, exercised a lot and achieved a lot, but my body just wouldn't let me."
People with ME experience severe, persistent fatigue associated with post-exertional malaise, the body’s inability to recover after expending even small amounts of energy. This leads to a flare-up in symptoms including chronic pain and difficulties with concentration, thinking and memory – known as 'brain fog' – and problems with the nervous and digestive system.
"Pain, post-exertional malaise and brain fog are my most challenging symptoms," Hattie said. "I am unable to do any exercise, which is particularly painful as, until I became really ill in autumn 2015, I had taken a ballet class once a week from the age of three. I am so sad that I cannot dance at the moment.
"I feel like I walk a tightrope with my energy levels, and if I do even slightly too much, I can be paying for it for days. A stressful work day can leave me confined to bed for the rest of the week. It is so frustrating being so limited, and I feel real grief at how my world has become smaller."
She added: "I’m not able to do much round the house. Some days, my husband has to help me do everything – from washing my hair to getting me into my pyjamas."
ME is often referred to as an 'invisible' illness, and the stigma and disbelief that many people with ME experience can make them feel ashamed to talk about it.
But Hattie stressed no-one should feel ashamed of having ME: "You didn't ask to become ill, and are coping with a really debilitating and difficult illness. It is not your fault that you have ME."
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