Before being diagnosed with ME, 12-year-old Jessica Morgan enjoyed swimming, Brownies and ballet among other activities.
But now every day is a battle against extreme fatigue.
Jessica, from Banbury, is sharing her story for May’s ME Awareness Month in a bid to improve public understanding of the condition.
ME – myalgic encephalomyelitis – is a chronic fluctuating, neurological condition that affects around 20,000 young people in the UK, and is the most common cause of long-term school absence.
People with ME experience severe, persistent fatigue – very different from ordinary tiredness – associated with the body and brain’s inability to recover after expending even small amounts of energy.
Symptoms include chronic pain, brain fog – difficulties with concentration, thinking and memory – and problems with the nervous and digestive system.
A lack of understanding means people affected by ME can experience disbelief from friends, family, teachers and employers.
Jessica said: “When you have ME, you don’t look sick, which means you have to constantly prove you’re actually ill. When I miss classes at school, people say, ‘you’re so lucky!’
“But missing out on school is one of the worst things – the social interaction, making friends, participating in the school play, the list goes on. I think a lot about what I used to be able to do.”
She added she used to be bouncy, chatty and energetic, but when she became ill, she had to quit so many of the things she loved such as swimming, Cubs, Brownies, cello and ballet. Since before Easter she hasn’t been well enough to go to school.
“I am tired pretty much all the time,” Jessica said. “My speech is often slurred and I simply can’t get my words out sometimes. It’s sort of like being stretched on one of those medieval stretching machines.
“I often get headaches and feel light-headed, and my muscles always hurt. My ME makes it a big struggle to even get dressed, most days I just live in my pyjamas and dressing gown.”
A key feature of ME is ‘payback’ where people with the condition feel utterly debilitated for days after simple physical and mental activities.
But Jessica thanks her supportive family – and dogs – and the understanding from friends for helping her cope.
“My mum is the best in the world, she completely understands everything and is very kind.
“My brother always watches Doctor Who with me, and he never talks about ‘it’ when we’re together, which I love. He always takes my mind off things,” said Jessica.