Importance Score: 35 / 100 🔵
Recurring episodes of nausea struck musician Bella Johnston just as she prepared to perform, triggering a cascade of distressing symptoms. Although feeling well moments prior, the sudden onset of violent vomiting became a terrifying norm. “The vomiting was unpredictable,” she recounts, “My body would convulse uncontrollably… it was completely beyond my control.” These episodes marked just one facet of a complex array of unexplained health issues plaguing the then 19-year-old for over three years, symptoms initially dismissed as teenage ailments, highlighting the challenges of misdiagnosis and the arduous journey to uncover rare diseases like paraganglioma, the cancer she would eventually be diagnosed with.
Early Symptoms and Misdiagnosis
Bella’s health decline began at age 15 in rural New South Wales. “It started with low blood pressure,” she explained.
“Mornings were particularly difficult. Upon sitting up, I’d immediately experience lightheadedness, forcing me to lower my head to prevent fainting.”
Exhaustion and mood fluctuations further complicated her daily life. “As a teenager, these symptoms were easily overlooked as normal teenage experiences,” she noted, contributing to the delayed recognition of her serious condition.
Dismissed Health Concerns
A persistent cough accompanied by severe vomiting intensified Bella’s and her family’s concerns.
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“School became a struggle. Frequent vomiting episodes forced me to leave class repeatedly,” she recalled.
Rapid weight loss further alarmed her, dropping from 65kg to 58kg within weeks. Medical consultations and blood tests yielded no answers, leaving doctors “perplexed.”
Frequent changes in junior doctors at the regional practice hindered diagnostic progress. Different doctors at each visit impeded a consistent approach to identifying the root cause of her symptoms.
“Anti-nausea medication and codeine cough syrup were prescribed, addressing symptoms but not investigating the underlying condition,” Bella stated.
When a noticeable lump developed on her throat, it was misdiagnosed as glandular fever, further delaying accurate diagnosis and appropriate treatment.
Impact on Daily Life and Well-being
Over the subsequent year, Bella missed nearly half of her schooling, battling increasing isolation and persistent sickness. Continued weight loss and debilitating fatigue confined her to bed for extended periods.
Her passion for music waned as she lacked the energy to play guitar, and singing became painful due to coughing and vomiting.
A new doctor, focusing on her weight loss and frequent vomiting, incorrectly diagnosed anorexia and bulimia, a diagnosis accepted by her parents.
“I regret not having the confidence to challenge the diagnosis at the time,” she reflects. “Questioning doctors and parents felt overwhelming at 16. Part of me just wanted an explanation, even if it was wrong.”
Bella knew the eating disorder diagnosis was inaccurate. Her lack of appetite and involuntary vomiting contradicted the conditions, and body image was secondary to her overwhelming physical symptoms.
Despite her intuition, she participated in the prescribed treatment, including family therapy.
“Each session involved family members, including my younger brothers, and public weigh-ins,” she described.
Further weight loss led to accusations of deliberately inducing vomiting, intensifying the family’s focus on the misdiagnosis.
A Christmas dinner incident, where Bella vomited after eating, resulted in accusations of intentionally “ruining Christmas,” deepening the family rift.
The therapy and perceived parental disbelief strained family relationships. Upon turning 18, Bella discontinued family therapy.
University studies in PR and communication were interrupted by constant pain. The neck lump enlarged, hair loss occurred, and persistent fevers plagued her.
Dropping out of university after six months, Bella relocated to Melbourne, pursuing bar work and musical gigs to sustain herself.
However, persistent nausea during performances extinguished her hopes, and her health continued to decline. The neck lump grew, and further weight loss ensued.
Disillusioned with the medical system due to perceived dismissal of her concerns, Bella hesitated to seek further medical help.
“I felt dismissed and unheard by medical professionals. My trust in the medical system eroded,” she admitted.
Seeking Alternative Therapies and the Influence of Belle Gibson
Instead of returning to conventional medicine, Bella consulted a naturopath and explored wellness accounts on Instagram, embracing alternative therapies, clean eating, and green smoothies.
“My diet shifted to include foods like turkey mince, sweet potato, and avocado,” she stated.
She participated in a 30-day green smoothie challenge, experimenting with various recipes daily.
Following Wellness Influencers
Among the wellness accounts Bella followed was that of Belle Gibson, then a prominent figure with 200,000 followers, promoting alternative cancer cures and wellness recipes.
“I remember being inspired by Belle Gibson’s claim of overcoming cancer through natural methods,” Bella recalled. “It offered hope that I could heal myself, regardless of the underlying issue.”
Bella adopted recipes from Gibson’s wellness book, “The Whole Pantry,” and diligently followed her Instagram posts, seeking remedies.
Beetroot soup, bone broth, and Epsom salt baths, recommended by Gibson, became part of Bella’s regimen.
Finally a Diagnosis and Treatment
An encounter at a local clinic while seeking treatment for a burn marked a turning point.
“The doctor recognized my deteriorating health immediately and asked, ‘Is there anything else you want to discuss?'” she recounted.
Feeling finally heard, Bella described her prolonged symptoms and displayed the neck lump.
Urgent referral to a specialist hospital for an ultrasound followed. The scan prompted immediate concern from medical staff, leading to further consultations.
“The reactions to the scan indicated something serious,” she realized.
A CAT scan confirmed the initial suspicions. Bella was instructed to return for the results, and her father joined her for support.
Accurate Diagnosis of Rare Cancer
“The diagnosis revealed a tumor, a rare form of cancer called paraganglioma,” she stated.
Relief overshadowed distress upon receiving the diagnosis. “Finally, there was an explanation and a path forward for treatment,” she thought.
Surgical Intervention and Aftermath
Days later, Bella underwent an extensive eight-hour surgery to remove the tumor, which had intricately entangled itself with neck veins, nerves and the skull base.
“The surgeon described the removed tumor as resembling ‘rotten fruit,’ blackened and severely compromised,” she recounted.
Despite successful tumor removal, its size (7cm by 5cm) and location raised concerns about potential cancer spread to the brain, necessitating radiotherapy.
Mistrust in conventional medicine, fueled by Gibson’s misleading content, initially made Bella hesitant to pursue radiotherapy.
Her father’s firm insistence ultimately convinced her to proceed with the necessary treatment. “He made it clear that refusing was not an option,” she explained.
Throughout gruelling radiotherapy, Bella continued seeking validation from Belle Gibson.
A comment on Gibson’s page, expressing gratitude for a smoothie recipe, led to limited online interaction.
“I wrote a fan message, detailing my diagnosis and requesting a meeting,” Bella said.
While a meeting didn’t materialize, Gibson responded to Bella’s queries about dietary additions for “healing,” recommending turmeric and apricot kernels, which Bella consumed alongside medical treatments.
Bella estimates “three or four” direct interactions with Gibson occurred.
Post-radiotherapy, marked by hair loss and exhaustion, Bella anticipated a long recovery.
Long-Term Effects and Reflections
News of Belle Gibson’s fundraising inconsistencies and subsequent admission of fabricating her cancer story surfaced.
“Disbelief was my initial reaction,” she admitted.
“The revelation that Belle Gibson never had cancer was shocking and difficult to process amidst my own health struggles,” she stated.
Bella watched the televised interview with journalist Tara Brown, observing Gibson’s demeanor. “She seemed disconnected from reality,” Bella noted.
However, Bella’s feelings towards Gibson are nuanced.
“I feel pity for her. Loneliness and isolation can lead to irrational actions,” she commented.
“The attention may have been addictive, and the situation spiralled beyond her control,” Bella speculated.
Bella unequivocally condemns Gibson’s deception and empathizes with those financially and emotionally harmed.
She acknowledges Gibson’s influence could have led her to refuse life-saving radiotherapy without her father’s intervention.
Life After Cancer and Lingering Health Issues
Now 30, Bella is cancer-free, but lives with ongoing health challenges, including a persistent cough and food intolerances.
Singing and guitar playing remain difficult due to lasting physical limitations, which she describes as “the tragedy.”
“Chronic illness is likely a permanent part of my life, along with the ever-present fear of cancer recurrence,” she confided.
Her survival story and visible surgical scar provide assurance that future health concerns will be taken seriously by medical professionals.
Reflections on Misdiagnosis and Wellness Culture
Bella’s journey underscores the critical importance of accurate and timely diagnosis, especially for rare conditions. It also highlights the potential dangers of misinformation within wellness culture and the compelling need for evidence-based healthcare and critical evaluation of online health advice.