Woman told exhaustion was just ‘A-level stress’ overcomes debilitating diagnosis

An 18-year-old was told her constant exhaustion was likely caused by depression and the stress of her A-levels – only to eventually be diagnosed with a debilitating chronic illness.

Elizabeth Hope, from Cheltenham, Gloucestershire, experienced painful headaches and had begun falling asleep at 5pm every day while studying for her A-levels. “My mum would wake me for dinner and then I’d maybe do like an hour’s homework, which is absolutely not enough when you’re studying for your A-levels, and then fall asleep again,” the now-27-year-old recalls.

When Hope said she needed to lie down during rehearsals for the school show and stopped going to cheerleading practice because she was too tired, her parents knew there was a serious problem. “To start off with, my parents thought ‘oh she just doesn’t want to go to school’,” she says. “But I started not being able to do the things that I enjoyed, so then we realised that something was very wrong.”

She visited another doctor, who found Hope was experiencing myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME, a long-term illness that affects the nervous and immune systems. People with ME can experience severe pain and fatigue, as well as a range of other symptoms, making everyday physical and mental tasks exhausting, according to the NHS.

Hope was so exhausted that she struggled to leave the house without using a wheelchair. “I was literally stuck in my house,” she says. “We would maybe go out to one shop and then I would have to come home. Being able to use a wheelchair was amazing for me because I could go to two or three shops or go to the park and stuff like that.”

A woman of 18 told by doctors that her constant exhaustion was likely depression and A-level exam stress, was diagnosed with a debilitating chronic illness which means she uses a wheelchair, but has overcome her adversity to become an award-winning wheelchair dancer and dancing instructor.

“Struggling with loneliness,” she was “really unsure” when her mother suggested she attend a wheelchair dance class in Birmingham – but it turned out to be one of the best decisions she ever made. She learnt to manage her energy levels and “fell in love with dance”, and has since gone on to perform in her wheelchair at the 2022 Commonwealth Games opening ceremony and two cheerleading world championships.

“I think for people with disabilities, it’s not like you can do whatever you want, because it’s not true, but you can do things in a different way,” she says. “But I love dancing and being able to share my passion with other people is just, yes, it’s really cool”.

As a dancer, Hope was soon competing and joined another two dance groups, Sun Rae Inclusive Dance and Apt Dance Theatre. She went on to win the UK ParaDance National Championships with the group and came second in the solo contest after performing to Kylie Minogue’s 2018 song “Dancing”. She also found a cheerleading group and travelled to Florida in the US, where she went on to win the world championships in 2019, in the adaptive abilities category.

In early 2022, Hope received a message from a friend suggesting that she apply for an assistant dance artist job with the national disability charity Sense. “They said you can apply with a cover letter and CV or via video,” she said. “So I basically made this video about how much I love dance.”

To her surprise she was invited to attend a recruitment workshop. “I was like, that was fun, but I won’t get a job because all these people are way more qualified than me,” she said. “But then I got offered the job.”

Hope was initially going to turn down the job because the working hours were more than she thought she could manage, but was told they would come up with a solution. She now teaches people with disabilities to dance, from non-verbal school groups to elderly people in care homes – including a 102-year-old.

“It’s just about managing my energy and pain,” she says. “So for example, I rest a lot and only work one day a week. It’s just about pacing your activity more than anything else.”

For more information on the accessible arts activities Sense offers, visit: sense.org.uk/our-services/arts-sports-activities-for-disabled-people/art-for-disabled-people/