A woman who was told she had brain cancer and had just six months to live is still alive nine years later - after being misdiagnosed by doctors.
Filmmaker and actress Tara Rule, 31, from Scotia, New York, US, suffered from years of poor health medics and had medics diagnosing her with some of the most serious of diseases ranging from brain cancer to multiple sclerosis.
She went through blood tests, MRIs, CT scans, PET scans, lumbar punctures, EKGs, EEGs, ultrasounds, endoscopies, colonoscopies, nerve stimulation tests, sleep studies, DEXA scans, multiple biopsies, and lymph node extractions.
But Tara was most shocked when she was diagnosed with terminal brain cancer - only to discover months later that she had in fact been misdiagnosed.
From a young age, Tara admitted she struggled to keep up with her classmates due to her extreme fatigue and feeling sick causing her to fall asleep during class and miss multiple days of school.
It wasn’t just her education that was a struggle for a growing Tara, but how she was treated by those around her also.
“I was picked on a lot for being very tall and thin with very long limbs and knees that bent backward”, she said.
“I got picked on by my peers and teachers alike for not being able to do things like run the mile without having to stop due to severe pain in my joints.
“I internalised a lot of shame and believed I was just lazy, anxious, and dramatic.
“Because I had such internalised negative beliefs about myself, I spent my entire life pushing myself past my limitations and as such, did irreparable damage to my body.”
As Tara grew older, her symptoms grew with her. She began experiencing intense digestive issues that resulted in rapid weight loss, became more fatigued than ever, and experienced severe brain fog.
As a result of her increased pain and suffering, Tara decided to reach out for medical help at the age of 16.
This commenced the beginning of never-ending doctor appointments, unnecessary treatments, and multiple life-threatening diagnoses that would impact Tara for the rest of her life.
The multitude of tests and scans led to a plethora of diagnoses, but the one that’s stuck with Tara the most was in 2015 when she was told she had six months to live at the age of 22, due to her being diagnosed with brain cancer.
“They told me to get a brain biopsy, but their guess based on the size and location of what would later be identified as a lesion was that I had about six months to a year to live”, she said.
“I did not want to spend those six months getting surgeries and chemotherapy so I decided to go to Europe instead.”
But six months passed Tara by while she was travelling around Europe thinking she was on death’s door, yet she was still alive.
After more tests and scans, the doctors concluded that she had been misdiagnosed with brain cancer, and had in fact been living for the past six months with impending doom for no reason at all.
“I had a large lesion on the left partial lobe of my brain. I’m honestly not sure what brought them to that conclusion based on one MRI”, she said.
“I found that since then, I see every second that passes to be another grain of sand falling through the hourglass, however, it’s a very stressful way to live as if every day is my last and it’s hard to relax.”
But her pain and constant misdiagnosis didn’t stop there. Tara was misdiagnosed with eight more illnesses, including multiple sclerosis, lupus, anxiety, Lyme disease, fibromyalgia, depression, von Willebrand’s hemophilia, and mood disorders.
In fact, it wasn’t until she was 31-years old that she was finally diagnosed with the correct disease through a genetic test by a genetic specialist; Ehlers-Danlos Syndrome, which is categorised as a group of inherited disorders that affect your connective tissues.
But even with the relief of this diagnosis, Tara has still struggled with the aftereffects of the unnecessary treatments that her body had to sustain throughout her life.
“I am currently using CellCept, it shuts down the immune system, so in patients like me with autoimmune conditions, it helps bring the immune system back to normal”, she said.
“I am slowly recovering from a systemic autoimmune condition that came about as a result of years of incorrect treatments due to misdiagnosis.
“I have been in physical therapy for many years to regain function such as walking, writing, using the restroom, and other functions that were lost due to encephalitis - a reaction that resulted from being prescribed treatment for multiple sclerosis, a condition I did not have.
“I am in severe pain every day due to the damage done to my joints and ligaments, as I was always encouraged by doctors to work out more, go for a run, go hiking, it’ll help your ‘depression’.”
Tara’s physical life will never be the same, but her mental health has also been greatly affected, as she said “I suffer from extreme PTSD, which affects every area of my life.”
“I am in therapy for medical trauma.”
Although her journey to a true diagnosis has been a difficult one, Tara chooses to look on the bright side of life and used her story to advocate for people to be heard by medical professionals, “There have been a few good doctors who have taken me seriously and advocated for me, however, the majority have treated me as less than human”, she said.
“I will never understand how or why physicians see someone like me with so many tests indicating something is terribly wrong, and come to the conclusion that its anxiety, no amount of depression or anxiety can give you lesions on your brain, borderline kidney failure, and a paralyzed small intestine.
“It’s a serious issue that needs to be addressed because unfortunately, my experience is not unique.
“In my experience, you’re lucky to find a doctor who doesn’t immediately blow you off, you’re really lucky if they actually care about your quality of life.
“More often than not, I’ve had to beg for even things like corticosteroids. I feel many providers would rather misdiagnose, or say you have psychiatric disorders than say they don’t know and refer to another doctor or specialist.”
Tara was ignored and disregarded by many healthcare professionals, and recounts at times that she even had important information about her health held back from her, “I’ve also noticed a pattern of doctors not disclosing findings after testing”, she said.
“Multiple hernias and a large cyst were found in my abdomen and pelvis in 2019, however, no one told me.
“It wasn’t until the cyst had grown to be visible and I had complications due to the hernias that my new PCP looked in my history and found this information.”
After 31 years of feeling confused, isolated, and disregarded, Tara finally has the chance to start healing and sharing her story so that others don’t have to go through what she had endured her whole life.
“On the plus side, this journey has taught me to trust myself no matter what, advocate for myself no matter what, and has shown me that I can get through anything”, she said.
“Whenever I feel angry or robbed of time and quality of life due to incompetent or uncaring providers, I put that energy into activism, disability awareness and advocacy, and helping others advocate for themselves.
“Facing my own mortality has pushed me to achieve my goals and follow my dreams now.
“I now feel it is my duty to help others advocate for themselves without having to go through the same traumas to get there.”
