Falkirk girl shares ME experience on 16th birthday

Hannah Sweeney was diagnosed with Myalgic Encephalomyelitis, more commonly known as ME, when she was just 14.

She told how doctors were initially baffled by her symptoms.

“They told me I was to go to school even if it meant risking passing out,” she said.

“They told me to do exercises every day, even if it was a good or bad day. This led to me to becoming bedbound.”

In fact, Hannah was suffering from a chronic, fluctuating neurological condition that affects an estimated 20,000 young people in the UK.

She reflects: “I was bedbound for most of the first year and was very sensitive to light and sound and to my body temperature and got really bad irregular heartbeats.

“It took me all my energy to go to the toilet. I didn’t eat properly for the best part of a year and lost a lot of weight. I was always feeling nauseous, light headed and dizzy and would often black out.”

Patients with ME like Hannah experience severe, persistent fatigue which is very different to ordinary tiredness as the body and brain struggles to recover after expending small amounts of physical and mental energy.

This leads to a flare-up in symptoms including chronic pain, difficulties with concentration, thinking and memory, known as ‘brain fog’ and problems with the nervous and digestive system.

Before Hannah became ill, she had dreams of becoming a professional footballer and used to play football seven days a week. “I played two matches a week if not more, and did five days of gym,” she said.

“Unfortunately I had to give up football and felt very let down by the education system. I was made to go on a part-time timetable and teachers forced me to walk to get stuff. They would complain that I was ‘always tired’ and that I was not willing to learn.”

A lack of understanding and awareness about the illness means children and adults affected by ME can experience disbelief and discrimination from others.

In a bid to educate others about the complexities of the illness, Hannah decided to mark her 16th birthday this week by speaking out about her own personal experience.

She said: “My advice to others is listen to your body. You are the only person that can tell if your body needs to rest. Pace yourself and be kind to yourself.”

Hannah now dreams of a future working with animals and helping youngsters with ME access better support in schools.

She feels so passionately about this that she has arranged a meeting with both Falkirk Council and representatives from the Action for Me charity to discuss the issue in greater depth this week.

Hannah’s mum, Sharon said she was “extremely proud” of Hannah adding that she felt her daughter was “a real inspiration” to others.

Mary-Jane Willows, head of Children’s Services at Action for ME said: “It’s so important to raise awareness and understanding of the impact of ME to tackle the ignorance, injustice and neglect experienced by thousands of young people, like Hannah, whose lives have been stolen by this debilitating illness.”

To follow Hannah’s ME journey visit @the_girlwithm.e. on Instagram.