A teenager with an extremely rare condition has spoken of the devastating battle she faced to be diagnosed.
In 2019, Abby Chamberlain was a normal 13-year-old girl, passionate about ballroom dancing and competing nationally. Barely four months later, in early 2020, the once fit and healthy girl was a shell of her former self.
Abby began experiencing a bizarre set of symptoms - dizziness, extreme pain, sensitivity to light and, most unnervingly, excruciating, unmanageable pain when she tried to eat.
"It was stressful," Abby said. "We had no idea what was happening, I would sit at the dinner table crying because it could be my favourite meal, but I could only eat two mouthfuls.
"When I eat I get extreme pain. There's cramping, a stabbing pain in my stomach and at the top of my chest."
Abby's mum, Larissa Chamberlain, said: "Abby has pretty much gone from a very active, physically fit girl, ranked second in Australia for ballroom dancing at 13, to being in a debilitating bed-ridden state."
After almost two years of searching for answers, the family now knows Abby, now 15, has a number of conditions, including a syndrome known as MALS or median arcuate ligament syndrome.
MALS is an extremely rare condition in which the nerves surrounding the abdomen are compressed and become inflamed. In other words eating, for many the highpoint of the day, is agony for Abby. The once vibrant student said it seemed that almost overnight her life came grinding to a halt.
"I pretty much wasn't eating anything, I couldn't drink anything, I just lay in the lounge room in the pitch black for eight months," she said.
School attendance dipped sharply and she pulled out of dancing. One by one her social circle dropped away, her parents watching on in horror as their daughter's life and body began to shrink.
"There were days where she was in that much pain she would just turn to me and say, 'I just want to die. Just let me die'," Mrs Chamberlain said. "I'd have to leave the room, it still hurts now. It was rubbish."
Perhaps the hardest part of the journey was the lengthy 21 months and multiple visits to multiple doctors in their hometown of Wagga Wagga in NSW's Riverina and Sydney before they were able to nail down a diagnosis for Abbey.
Abby's symptoms appeared in March 2020 but it wasn't until November 2020 that she was given a gastrointestinal scan that showed a gastric infection, and was diagnosed with a blood flow disorder known as POTS or Postural orthostatic tachycardia syndrome. However, another year passed until she was finally diagnosed with MALS earlier this month.
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On both occasions the family had to travel to Sydney for treatment and, in order to give her the attention she needed, the Chamberlains had to sell half of their Wagga Real Estate business.
"My entire family was affected and all our lives have changed," Abby said.
Like many with chronic pain conditions, Abby struggled to convince medical professionals of her pain, saying many claimed it was chronic fatigue, anxiety or anorexia.
"At the first appointment the doctor said, 'Maybe you have tendencies, is this in your head?'" Mrs Chamberlain said. "When we left Abby just burst into tears and said, 'Mum, I'm not crazy, this is really happening'."
Even after the scan in 2020 when Abby was first diagnosed with POTS, which is a blood flow condition, and Gastroparesis, she said she still came up against doctors who told her her pain was psychosomatic.
On one memorable occasion Abby, after she had already been diagnosed in November, was told her entire condition was simply a bad case of butterflies.
"It literally felt like I'd been stabbed in the back," Abby said of the experience. "To be told by so many doctors it's in your head, it's anxiety, you're anorexic and then for someone to say I had butterflies? I was just shocked."
Meanwhile, she was continuing to lose weight and had become almost skeletal.
"It was scary, my parents had to watch me basically fade into nothing because no doctor would help," Abby said.
Chronic Pain Australia's Fiona Hodson said unfortunately Abby's experience is very common, with hard-to-diagnose pain conditions often poorly understood and dealt with in the medical system.
"I wish I could say it is uncommon," Ms Hodson said. "Sometimes when people present multiple times with chronic conditions or symptoms they can be a bit dismissed which isn't great. It all gets superimposed on the individual and that's when people will say there's nothing wrong with you, you're just stressed, it's the same as what we called hysteria in the olden days."
Ms Hodson said in order to fast track diagnosis and boost understanding of chronic pain illnesses, a more comprehensive approach is needed which Chronic Pain Australia is currently lobbying for.
"This is not unusual and it's difficult when you have different specialties involved not communicating, so that's why it's very important to have a national pain strategy to upskill and educate clinicians to look at the person holistically and not just as a part," she said. "Everyone needs to have a better understanding and to be more empathetic."
Abby said she is sharing her story to raise awareness around MALS and her other two chronic conditions in the hope others will have an easier road to getting a diagnosis and getting treatment.
"I just want the world to know my story," Abby said. "So many people go through this and get ignored or experience medical gaslighting and I want to share my story with everyone so it stops."
Mrs Chamberlain said she understands the illnesses are very rare and hard to pinpoint, but wants better communication and listening from doctors. "It is hard to diagnose we get that, they are autoimmune deficiencies," she said. "It is more about making people aware that these conditions do exist so people can open their minds a bit."