Sydney teen with Chronic Fatigue Syndrome Instagrams her journey!!!
A young Sydneysider diagnosed with Chronic Fatigue Syndrome (CFS) has turned to Instagram to share her experience, in the hopes of raising awareness about the rare and debilitating neuro-immune condition.
Daisy Long, 14, was first diagnosed with CFS and Myalgic Encephalomyelitis (ME) in June of last year, after suffering from fatigue, pain, dizziness, fainting, nausea, weight loss and migraines.
Daisy said that in the months leading up to the diagnosis, she was so ill she was only able to occasionally attend school and was ultimately forced to undertake distance education instead.
One of the biggest obstacles she has faced is the lack of understanding people have about the condition, she said, which is sometimes referred to as “the invisible illness”.
One of the worst things I find is you’re going through so much pain, you’re so sick, but no one will help you,” she told 9news.com.au.
“I’ve been told by doctors numerous times that I have anorexia or bulimia or depression.
“It’s very misunderstood by society.”
Daisy said she has been taken to hospital emergency departments on a number of occasions suffering from ME/CFS related conditions, only to be turned away.
The teen said because of the chronic and complex nature of the illness, hospital staff “just can’t be bothered to help you so they just send you home”.
In December last year, she launched a new Instagram account dedicated to documenting her life and dispelling myths about the condition.
Daisy has been left largely wheelchair-bound as a result of her condition and only leaves her home on rare occasions.
The account, which features information and inspirational quotes relating to ME/CFS and photos of Daisy’s day-to-day experiences, has attracted more than 1200 followers.
Daisy said she was inspired to speak on behalf of other sufferers of ME/CFS, many of whom who are so ill they are paralysed, unable to speak and must be tube-fed.
Daisy’s mother, Sally Long, said dealing with her daughter’s condition was an “incredibly frustrating, lonely experience”.
“We’ve seen so many specialists and doctors and been to so many ER departments, we’ve done it publically and privately, you we just don’t know where to turn next,” she said.
“It has caused enormous strain on us as a family and I feel dreadful that I can’t help my daughter.”
Due to the fact ME/CFS affects each individual differently, there is no silver bullet treatment for the condition.
Daisy said she has tried hundreds of different medications and supplements but that “nothing has really helped”.
Ms Long said she has noticed a marked decline in her daughter’s quality of life following the onset of the illness.
“My daughter is no longer the person she was in 2014,” she said.
She was a very gregarious, popular, academic, sporty child.
“She is now physically weak, vomiting daily, housebound and can no longer go to school.
Ms Long believes life for people with the condition would be vastly improved if the condition was more widely recognised by medical practitioners.
“There [also] needs to be more medical treatment and more government assistance to help with this condition,” she said.
ME/CFS produces dysfunction in multiple systems within the body, and can affect the brain, as well as the gastrointestinal, immune, endocrine and cardiac systems.
The cause of the condition is unknown. An estimated 150,000 Australians suffer from ME/CFS.
Today marks ME/CFS International Awareness Day, held as part of Awareness Week, which runs from May 11 to 17.
For more information about MF/CFS, visit the EMERGE Australia website.