Struck by a “misunderstood” disease, a Sydney woman went from being an active teen to becoming bedridden in an “almost paralysed” state.
The last photo Sally Andrews and John Engel have of their family all together was in front of an Adelaide beach during an interstate trip in 2017.
Ms Andrews is standing on one side, Mr Engel on the other, and between them are their children Ryan and Ella, with her head slightly tilted onto her brother’s shoulder. The clouds behind them are tinged with an oncoming sunset and the family are smiling at the camera.
Unknown to them then, it was one of the last times Ella was able to move relatively freely, before she became bedridden.
“She got quite sick two days after that photo was taken. After that she really didn’t move. She came home and a few weeks after that we were in hospital,” Mr Engel told news.com.au.
“That was the last family thing we did. That’s why that’s such a good photo.”
Taken in 2018, Ella was two years into living with the condition myalgic encephalomyelitis (ME). While the condition is often grouped with chronic fatigue syndrome (CFS), Ms Andrews is frustrated at the lack of education and awareness of the two separate diseases.
Diagnosed with a “severe” case of the disease, ME has affected Ella’s entire body and left her in a bed-bound and almost paralysed state, robbing the once-active teenager of her freedom and youth.
‘Like a living death’
In comments dictated to her mother, Ella said her condition has been described to her as “a living death”.
“The state I’ve been in for two years is described as being what someone else may feel moments before death, yet it is my all day, every day,” she said.
“Even though I am lying in bed 24/7, people might imagine I have things to entertain myself, however I spend my days staring at four walls.”
Her condition means too much stimulus like sound or light can send her into a seizure-like “shutdown,” her mum said. While she can use her phone for a short period daily, Ella still isn’t able to sit upright and can’t do things like watch TV or listen to music. She largely needs to be kept in a dark room.
Ella’s illness first began after she contracted a severe virus at the age of 14. While her first bout of illness “really knocked her down,” she was hit with a series of viruses and bacterial infections, never fully recovering.
“Each time she would just get worse and worse and worse. By the age of 16 she became completely bed-bound,” Ms Andrews said.
Another “major downturn” two-and-a-half years ago left her in an immobile, paralysed state for around 12 months.
Describing the moment she was taken to hospital, Ella said it “felt as though I was dying”.
“I spent two months at the Royal North Shore Hospital [in Sydney] in a semi-comatose state. I couldn’t even wiggle my pinky finger or my big toe and was given liquid through an IV,” Ella said.
“I couldn’t speak or even murmur a word so I communicated by pointing at things, or just blinking my eye, or nodding my head with a yes or no.”
Two years to find a diagnosis
Looking at Ella’s illness, Ms Andrews believes an earlier diagnosis could have prevented some of the deterioration her daughter has experienced. A large part of this, she said, is the lack of awareness and education around ME in the medical community.
It took two years for doctors to give Ella the correct diagnosis, a period which saw her visit 38 specialists and undertake tests for multiple different cancers, diabetes, multiple sclerosis, and other rare diseases.
In that time, Ella went from being an active and ambitious teenager who ran, surfed and “radiated love and energy,” to someone who couldn’t get out of bed.
“[We spent] whole six hour days at the at Royal North Shore hospital every Friday for two years doing testing,” Ms Andrews said.
While research is currently under way at La Trobe University, there is no diagnostic test which detects ME/CFS.
La Trobe University’s Dr Heidi Nicholl, who is the CEO of Emerge Australia, which represents people living with the condition, admitted the disease is “misunderstood”.
“While there have been some recent advances in the biomedical understanding of ME/CFS, much more research needs to be undertaken to find effective diagnostics and treatments for a condition which is still widely misunderstood by the general community and by clinical professionals,” she said.
“Further research will help people whose lives are profoundly impacted by the condition.”
‘Hidden hoops’ of myalgic encephalomyelitis
While the physical and emotional toll of ME are evident, the monetary implication of chronic illness are less talked about – yet they are things which also affect Ella’s family.
Due to ME/CFS not being classified on the NDIS, the family receive no extra financial support, despite Ella’s care costing thousands of dollars each month. They’re also on a single-income salary after Ms Andrews left her job as a general manager of a design studio to become her daughter’s full-time carer.
While Ms Andrews has continued to advocate for funding while looking after Ella, she and Mr Engel acknowledge that not all ME/CFS patients are in the same boat.
“There’s people out there who don’t have any support and they’re too sick to apply for the NDIS.
“There’s so, so many hoops and things to go through, it’s virtually impossible for even us to get, but for people who are sick, there’s just no way they’ll get it.”
In an effort to help, Ella’s high school friend, Mia Wilson is running the Sydney Morning Herald Half Marathon on May 15 and raising funds through a GoFundMe.
The event has allowed the old friends to reconnect, something Ella’s parents say has been wonderful to see.
Ms Wilson said she hopes to raise money for the family and support any treatments and medication Ella may need. So far the GoFundMe has raised over $9600 out of its $20,000 goal, however Ms Andrews says any amount would be a “huge” help.
“For Mia to support us with the treatments, it means the world. Ella going through this is obviously hurting us emotionally but it’s a huge financial burden as well.”
‘It aches to know the life I could have had’
In the six years Ella’s family have spent battling her disease, they say it’s the small, everyday events they miss the most.
“Ella not being able to have dinner with us at the dinner table – we haven’t had that for four years. Not being able to get together as a family and celebrate Christmas,” Ms Andrews said.
“She’s just missed out on the biggest part of her life as a teenager and now a young adult. It hurts us so deeply that she’s missing out on life.”
“When you can’t do the normal things that families do, you appreciate what you have,” Mr Engel said.
It’s something Ella is painfully aware of too.
“This year is the year all of my friends turn 21 and it hurts a lot to know I’ll be missing out on those special celebrations I have always looked forward to,” she said.
“I spend my days thinking about all the amazing things I could be doing and achieving if I was healthy.”
“It aches to know the life I could have had, the things I could have achieved, and the person I could have become.”
Support Ella’s family though Mia Wilson’s GoFundMe