'My daughter was diagnosed with an eating disorder. The truth was so much worse.'

As a child, Chelsea Bagnall was often unwell, experiencing recurring urinary infections, stomach aches, eczema, vomiting, and bowel issues.

At birth, she was below average weight, and throughout her childhood and adolescence, remained consistently underweight. 

"The doctor always reassured my mum that, because my mother was slender, I was naturally small as well," 19-year-old Chelsea tells Mamamia. 

By the time she was in Year 6 though, Chelsea's mum, Emma, became concerned. She started giving her daughter supplement drinks to help her gain weight. By Year 8, Chelsea was showing signs of endometriosis, so Emma took Chelsea to the doctor. 

Watch: Multiple Chronic Conditions: A Day in the Life. Article continues after the video.

"When she voiced her concerns, they were dismissed—until Year 9, when my symptoms worsened to the point that I was frequently fainting and missing school," shares Chelsea. 

"At that time, my mum also noticed that I still wasn't developing like my sister and friends. Trusting her intuition, she took me to a dietitian, who met with me regularly for a year. Despite this, I didn't gain any weight and remained the same."

Eventually, Chelsea underwent surgery for endometriosis. During her follow-up appointment with an endocrinologist, bloodwork revealed signs of another autoimmune disease. Chealea's health was declining rapidly. 

 "I waited over four months for an appointment, only to spend just 10 minutes with the specialist. She took one look at me, calculated my BMI (which was 13), and immediately sent me to the hospital."

Chelsea was placed in an emergency bed, until a tube was inserted through her nose. She was given drugs that made it difficult for her to stay awake, despite being in immense pain for days. 

"It wasn't long before I realised that, without any proper consultation about my actual medical condition, I had been placed in a room with three other girls, all of us with tubes coming out of our noses.

"Eventually, a psychiatrist came to my bedside, asking me leading questions about body image and my mental health."

Chealsea was diagnosed with ARFID, or Avoidant/Restrictive Food Intake Disorder, and told she would be starting the hospital's eating disorder program the next day.

"I was confused, and when I raised my concerns, I was given one explanation while my mother was given another. She was misled into believing them. When I told my mum that I wasn't like the other girls, she thought I was in denial about having an eating disorder—just as the nurses had told her. They convinced her that I would try to use any excuse to leave the program.

"The nurses claimed that my anxiety was the cause of my vomiting, nausea, and pain and insisted that the hospital's approach was the best thing for me. At the time, it was presented as my only option, and I was told it would help me gain weight. In reality, I was just weeks away from complete organ failure." 

While other young women in the program improved, Chelsea only got worse. She endured this cycle for nearly four years, spending months in hospitals, each visit lasting up to eight weeks at a time.

"For the entire first year, I had three hospital admissions, each lasting between five and eight weeks. No matter which hospital I went to, I was placed back into the same program because of my previous discharge papers.

"Because of the force-feeding, everything kept getting worse. The nausea and pain became unbearable. In the years that followed, I was repeatedly denied further investigations and tests by the gastroenterologist, despite constantly insisting that something was wrong and that I didn't have an eating disorder. My concerns were dismissed every time."

For Emma, the experience prompted a mix of confusion and guilt. 

"There was so much confusion because you're trusting these doctors that you have no knowledge about, and you're believing people that really have led you astray and just labelled and had their own agenda," says Emma. 

The challenge of advocating for her daughter while maintaining relationships with medical professionals was constant. 

"In the moment, it's so hard to detach from being that mum who is fighting for their daughter, but also trying to keep peace, to not disrupt the waters too much, because if you get on their wrong side, many of the doctors just disregard you."

Chelsea says almost every doctor she saw dismissed her pain, telling her it was all in her head and that I needed therapy and psychiatric drugs. 

"Whenever I voiced a concern, I was gaslit and belittled into questioning my own body and my own understanding of myself."

Meanwhile, Chelsea's pain had become so severe that she couldn't even stand up without fainting and experiencing intense pain. 

"It takes me an entire day just to manage the nausea and pain enough to eat—yet even then, I can't consume more than half a cup of food per day.

"Over the years, I have felt hopeless, defeated, unheard, depressed, and angry. I have lost so much of my life because I can't do the things I dream of doing."

The breakthrough came unexpectedly through a series of fortunate encounters, starting with a substitute GP taking the time to thoroughly examine Chelsea. 

"This gentleman was a mature doctor, he listened to her stomach, and he was there for like, nearly five minutes, just with a stethoscope," says Emma. The doctor then recommended a series of tests. 

When Chelsea couldn't make it through Christmas, Emma took her to the ER for the CT scan. 

"The lovely ER doctor spent hours on the phone talking to the vascular surgeon in Canberra hospital, even though they're all on holidays then. And that got us pointed in the right direction."

After nine hospital admissions, and years of suffering, Chelsea was finally diagnosed with Median Arcuate Ligament Syndrome (MALS) and Superior Mesenteric Artery Syndrome (SMAS). 

Emma says while finally receiving a diagnosis was exciting, it ultimately led to more guilt. 

"She shouldn't have gone through this."

For Chelsea, it was heartbreaking. 

"To this day, I still don't know the full extent of my health conditions, as every step of this journey has been a battle—a battle to be heard, a battle to be seen, and a battle for my life.

"When I finally received my SMAS and MALS diagnoses, it was heartbreaking. I had endured years of suffering, only for a random GP I had never met to refer me for a scan—one that an ER doctor would ultimately perform, giving me some of the answers I had fought so hard for.

"I was shocked because, during a previous hospital admission, I was told with certainty that I didn't have these conditions.

"At the time, their dismissal felt like a relief. After all, these illnesses have no cure—just a lifetime of daily struggles and pain."

Chelsea now needs urgent surgery to survive, and is currently on an emergency waiting list. 

"The upcoming surgery is scheduled to take place at Canberra Hospital in about three to four weeks, depending on the emergency waiting list and triage. Afterward, Chelsea will stay in ICU for one week, followed by another six weeks for the recovery period," says Emma. 

The cost of Chelsea's treatment is currently $2000 each month, with Emma the main provider and carer post-surgery. Recovery could take up to a year and there will be lifelong challenges for Chelsea to become fully independent.

"She's going to need pain management, which will sometimes involve going back to the hospital to have Ketamine treatment, and other times it will be in private rooms with a pain specialist. They also suggest doing hypnotherapy, counselling, and physical therapy to help improve strength and regain muscle mass, as well as regular Celiac Plexus Block to the nerve endings and continuous NJ tube feeds for weight gain and nutrition."

Emma has set up a Go Fund Me page to help raise funds for Chelsea's treatment and recovery. You can help by visiting here.

Feature image: Supplied.