When Bella Johnston had cancer, she spent years following Belle Gibson's advice.

Bella Johnston was around 14 years old when she suddenly began to lose weight. 

She tells Mamamia that she lost about 25 kilos within a matter of months and, in addition to this dangerous and conspicuous change in her body, she experienced a number of other disturbing symptoms: fatigue, dizziness, a persistent, hacking cough that would cause her to lose her breath and pass out. 

Her parents took her to go and see a doctor, who quickly asserted that she was suffering from the eating disorder anorexia nervosa – although Bella knew this wasn't true. 

"As soon as that was written down, nobody believed me about anything... I was never offered a scan, a CAT scan, an MRI or anything. They told me that my cough was asthma – I've never had asthma," she explains. 

Her sickness only intensified. Bella continued to lose weight and she developed a pronounced lump in her neck that the doctors dismissed as glandular fever. By the time she was 18 years old she was so frustrated by the system that was blatantly failing her, she cut herself off from her doctors and moved to Melbourne. 

There, she started to become interested in alternative medicine, because she was so frantic to understand what was wrong with her body. She started reading advice online and visited a naturopath who informed her that her sickness must be the result of a "blocked gland" and that she needed to take Epsom salt baths and drink bone broth. She tried it all, multiple times. 

"I made so much f**king soup. I had so many f**king Epsom salt baths," Bella laughs. 

It was around this time that Bella first came across Belle Gibson, the wellness blogger and social media influencer who was gaining a huge amount of interest for claiming that she had healed from her terminal brain cancer through diet.

Bella outside hospital. Supplied. 

Gibson, who would accumulate over 200,000 followers on social media, was well on the way at this point to launching her empire: the hugely successful mobile phone app known as 'The Whole Pantry', a website, and a recipe book. 

Bella was captivated by the ideas would comment on Gibson's posts frequently, asking her for advice or thanking her for sharing information about her diets and Gibson would respond with what Bella calls "trivial" recommendations, such as making 'detox' smoothies. 

It was only by chance that Bella was eventually given the diagnosis and surgery that would ultimately save her life. 

"I burned myself quite badly one day and I went to the doctor and he looked at me and he was like 'What is wrong with you?' I looked like death. I was 43 kilos, I was pale, I had really low blood pressure, to the point where he was like 'How are you standing up?'"

From there, Bella was rapidly referred for a scan for the large lump now protruding from her neck and she was in surgery within a week. While the doctor had maintained some semblance of hope that they weren't looking at diagnosis of cancer, the surgery confirmed the shocking reality. 

"When the surgeon opened me up, he said it looked like rotten fruit. It was everywhere, it was black." 

The cancer had spread across the top half of her body, wrapping around major parts of her nervous system. After having it removed, Bella stayed in hospital for a long time, struggling with the profound consequences of having had these masses removed from her body. Her nerves had been damaged in the process, leaving her right arm and half of her tongue and vocal cords paralysed. She was also left in a terrifying limbo, as the doctors could only assume that the cancer had also spread to her brain and they warned her that if this was the case, she would likely die. 

"I had a lot of scans and then finally they were like 'Holy shit, it's not in your brain. It's a miracle.' Everybody celebrated, it was a big thing at the hospital, Bella recalls. 

But it was far from the end of her treatment journey and throughout her time undergoing radiotherapy, Bella continued to look to the advice of the miraculous survivor, Belle Gibson. 

"I remember when I found out I had cancer, I was like 'Oh my god, I'm just like Belle Gibson. This is amazing, we could be best friends,'" Bella says.  

Besides the treatment that she was receiving from her medical team, Bella continued to follow Gibson's advice and says she was "sucked in" by the Instagram posts she published, with long, descriptive captions that promised so much to sick people. 

Bella remembers one post claiming that there was a "city in the Middle East" with no cases of cancer because they eat apricot kernels and so, in addition to preparing the smoothies and recipes that Gibson was promoting, Bella found herself researching how to boil and prepare ingredients like apricot kernels. 

Looking back now, Bella says that she understands how people were so seduced by Gibson's messaging. Besides battling cancer herself, Bella was distraught to watch her Aunt Jen, a woman who she loved and respected, dying of bowel cancer around the time of her own diagnosis. She remembers that her family became so grief-stricken and distressed by her aunt's illness that they tried things like ordering tea from India in the mail that claimed to cure cancer. 

"It didn't even show up, it was such a scam. But that's how desperate people feel in these kind of scenarios, watching people you love die before you," she reflects. 

Watch: 7 News report about Belle Gibson from 2018. Article continues after video. 

In 2015, Bella wrote an article reflecting on how people battling cancer can lead people to reach for solutions beyond the medical establishment.  

"A sane, level-headed person could easily look at these alternative therapies and say it's a bag of BS... but people who have cancer, or are watching someone they love suffer, aren't sane. We are helpless. We are so vulnerable. All we want is an easy, pain-free solution. We want our lives back." 

Bella sees now how Gibson exploited that vulnerability. 

Belle Gibson's downfall began in March 2015 when it was revealed that the 26-year-old was failing to donate money to the charities that had been nominated on her app. 

A month later, amidst growing speculation that she had also lied about her cancer diagnosis, Gibson claimed that she was "wrongly diagnosed" with other cancers that she had publicly claimed to be living with, including blood, spleen, uterus and liver cancer. However, she maintained her terminal brain cancer diagnosis was real, until finally admitting to the lie in an interview with Australian Women's Weekly. 

Bella says that she was "gobsmacked" when the news of Gibson's fraudulence broke. Gibson had been the focus of so many conversations and so much sympathy in the cancer community. Looking back now, Bella says that she theorises about who Gibson really was and why she stuck by her lies for so many years. 

"I think she was probably just really sad and lonely and really wanted people to connect with her but she didn't know how to connect with them," she reflects. 

"But it's one thing to lie about things in and then another to profit off claiming that you've discovered a cure for a disease that has no cure. That's really unforgiveable for me," Bella says. 

Bella Johnston. Supplied. 

While Belle Gibson was fined $410,000 in 2017 for breaching consumer laws, she has never been criminally charged. Bella says that there has been no justice served and says that there are too many people who were given false hope and strung along by Gibson's story and products. 

Bella is now living life cancer-free, although she has to undergo regular scans ("I have the best doctor in the world, I've been with him for about nine years now and he literally just texts me 'All good'".) She has also since gone on to become a successful social media personality herself after making an appearance as a contestant on The Bachelor. But she is still overwhelmed by the thought of people who may not have continued their cancer treatment because they were misled by Gibson's claims. 

"In my dream world, I would love her to apologise to the people that she f**ked over, like me. I would also like to see some criminal charges; I know it's been nearly 10 years but I just don't understand why the Victorian government hasn't looked into this." 

Looking at social media today, Bella says that the story should serve as a warning of how dangerous pseudoscience can become, particularly in the wake of COVID-19 and the explosion of misinformation around vaccines and alternative therapies that appeared across platforms like Instagram and TikTok. But she also understands inherently how failures of the medical system, such as the regional health service that misdiagnosed her for years, can drive disappointment and desperation. 

"I think it was so easy for doctors to slap the diagnosis of mental health issues on me as a teenage girl and I don't think they would do that if I was a bloke... But even when I had 'anorexia' in quotation marks, they didn't give me a bed and I was never actually admitted to hospital. It was just mistake after mistake after mistake.

"But I still just think everyone needs a bit of a wake up call on how predatory the [alternative medicine] industry can be and how detrimental these effects can be."

Elfy Scott is an executive editor at Mamamia. 

Image: Canva/AAP/Supplied