Lying in a hospital bed. Your legs don't work. The worst headache of your life. You’re told there’s nothing wrong with you. It’s all made up in your head and you're the one doing it to yourself.

 

17-year-old Bianca Roberts is the kind of person who warms the very room she enters like a beam of sunshine. Her kind and positive nature is infectious. However, she is now living with a chronic and debilitating illness with no cure in sight.

 

I spoke with Bianca and her mother Julie as they retold the story that has entirely changed their lives.

 

On day two of a three-day cadet camp, one of the first destinations on the road to becoming the pilot Bianca aspired to be, she developed a headache. She took some Panadol and tried to go on as normal, except the painkiller had no effect. On Sunday, the third and final day of her camp, she returned home and complained of this massive headache to her mother Julie. A visit to the GP on Monday told them that it was probably low iron, Bianca was instructed to take some Panadol and return in a week.

 

Blood tests were done, low iron was confirmed and Panadeine forte, a stronger painkiller was prescribed for the migraine. She was in so much pain, her mother had said. She couldn't go to school or do anything. Ten days in, the pain hadn’t changed, Bianca woke up and said ‘“mum my legs feel funny”. After the 6 km drive to the Lismore hospital, she couldn’t walk properly. By lunch time she couldn't sit up unassisted.

 

The emergency department were quick off the mark and took it very seriously. From the MRI results they found a very large cyst in Bianca’s brain and that she needed to go to Brisbane for specialist care. A visit from the pediatrics doctors marked the beginning of Bianca’s battle against the hidden dangers of the medical gender bias.

 

They concluded that Bianca’s symptoms were all in her head. That the cyst was not causing any of the problems, it was unrelated. The pain and loss of ability to move was something she had made up. She was sent to the children’s ward with the declaration of ‘she’ll get better, you just have to tell her to get better’ following her through the hospital.

 

While others may not be so fortunate to have someone to advocate for them, Julie knew the hospital system having worked in one herself, giving her the insight into who the ‘better’ doctors are. Her insistence on not being pushed aside resulted in the head pediatrician, Dr Ingles reviewing the scans and agreeing that something wasn’t right, pediatrics was wrong and there was a real, serious problem. He succeeded in having her transferred to Queensland Children's Hospital in Brisbane. She needed a lumbar puncture to rule out an infection in her brain.

 

Without even meeting Bianca, the specialists in Brisbane decided that this was indeed all in her head. Just to appease her and her mother they conducted the lumbar puncture, on the ward, with only a local anesthetic. It was at this point during the interview Bianca spoke up, Julie had done most of the recounting as, I was soon to find out, Bianca's memory disappearing became another symptom.

 

“I remember that, it was terrible and it hurt so bad. I felt like I was on a boat, I couldn’t move very well and everyone was moving around me. They’re sticking needles into my spine and it hurts”.

 

Brisbane tried to send her home, they were persisting with it being a neurological functional disorder brought on by mental illness, a condition in which a person is experiencing physical symptoms that no medical condition or testing can explain. At this point Bianca was cleared by their psychologist team as having no mental illness. However, she was still unable to stand, to sit up and was experiencing myoclonic jerks. She looked like she was having a seizure.

 

Rehab began, as a conditional compromise to sending her home. This was only for only two weeks, as the belief was, she would recover.

 

“The whole point was to distract me, so I’d walk normally. Started throwing toys at me to try and get me to catch because I’m a dog right? It was terrible. It never worked”.

 

Medical staff excluded Julie from Bianca's physio sessions as they believed she was putting an act on because her mother was there. They went along with it and to no surprise of their own Bianca made no spontaneous progress now that her mother was not in attendance. Many doctors had also suspected that someone in Bianca's family was abusing her and that's what was causing her symptoms, despite no evidence as this was completely untrue.

 

Once Bianca was able to safely transfer from a bed to a wheelchair they were sent home to Lismore. Except she wasn’t supposed to use the wheelchair. They were told yet again that it was all in Bianca’s head and that her mother just had to tell her to get up and do things.

 

“They told us there was no medication that would help her whatsoever because it was all in her head”.

 

At this point her memory was approximately 20 minutes. Her high school is a 25 minute drive from their home, by the time they arrived Bianca had no idea what she was there for, no recollection of the day's classes, what she was meant to do or who she was meant to see.

 

A follow up with the head pediatrician from Lismore who had referred Bianca’s case reviewed everything Brisbane had said and done and agreed that it wasn’t right, started her on steroids and more physio. Her memory improved to one hour with the steroids however it has not improved past that point.

 

From the initial onset of Bianca’s illness in May, it wasn’t until October that Bianca was referred to Westmead hospital in Sydney. After an hour and a half, they knew she had post viral inflammation syndrome in her brain. They started her on strong antibiotics and four days later Bianca walked. The undeniable response to the medication proved that there was something wrong and that something was causing inflammation in her brain.

 

Every time the doctors stop or reduce the antibiotics Bianca gets more symptoms. In terms of an official diagnosis there are many, depending on the specialist and the day. Dr. Ingles has recorded it as severe encephalitis causing chronic fatigue syndrome. The Sydney based specialist calls it a post viral infective or inflammatory syndrome, with chronic fatigue syndrome and chronic migraine. The literature has post-viral inflammation syndrome as the name for chronic fatigue syndrome when it has existed for less than 6 months. Bianca has had three and a half years. This should influence the diagnosis to straight chronic fatigue syndrome, Myalgic encephalomyelitis

 

Her disease is not very common and there is no cure. There isn't even a clear plan for managing symptoms. It has been a process of trial and error with different medications and treatments to make life as normal and comfortable as possible for Bianca.

 

The COVID pandemic has created a very unusual silver lining in her case. Long COVID is the closest condition that mimics Bianca’s disease. The specialists are hopeful that as such a large number of people are becoming affected, and its impact is reaching health professionals and individuals who have significant influence in the health sector, they will be able to find a treatment for Bianca through the long COVID research.

 

There has been a lot of uncertainty throughout Bianca’s illness. The neurological functional disorder diagnosis has followed Bianca around. As have accusations of mental illness and family abuse being the cause of her condition. The hurt and frustration at not being believed made this terrible and frightening experience that much worse.

 

“They can't just admit that they don't know, they don't know what to do” says Julie.

 

It has only been in the last 12 months that the doctors have acknowledged that they don’t know what they are doing. It is a rare condition and every person who has it responds differently.

 

Bianca remains unshaken by her condition and the disbelief she faced from doctors. She credits her resilience to her stubbornness, it has pushed her through.

 

“There was this whole thing of ‘I have to be okay, I have to keep going. I can't get a mental illness because otherwise they’re right and I'm wrong”.

 

She has been told that she is useless by people who were supposed to be her friends and is unable to do any more than 3 hours of school a day without being completely and utterly exhausted. Bianca is unable to retain new information for any longer than an hour. Her experiences are not the kind you expect as a 17-year-old.

 

“Right now I'm fine. That's the advantage of having no memory. You can't remember that you're not fine”.

 

Bianca has two friends close to her heart, a good family and she says that is good enough.

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She is hopeful that one day she will recover enough to fulfill her dream of becoming a pilot. Until then her halfway goal is to be an aeronautical engineer. For someone who would love to be in the sky at all times, knowing how we get there is super cool and that is enough for now.