A Kiwi woman who is on track to be a high-performing athlete hopes to inspire other people with chronic illnesses.
Brianna Carson dreams of becoming a high-performing triathlete. Like those around her, she puts everything she has into training, is mindful of fueling her body, and is a resilient athlete.
The big difference between her and those she competes with is Carson has several chronic illnesses which nearly cost her her dream.
After years of searching for answers and itching to get back into sport, Carson is now not only on track to becoming a high-performing athlete but she hopes to inspire others who fear their chronic illnesses will hold them back.
"Everything I eat, I'm going to vomit."
Carson was a happy and athletic child despite experiencing "mysterious pain" beginning at age eight. Doctors couldn't find an explanation, telling her it was either growing pains or all in her head.
Still, she continued to train as a high-performance athlete and even won her age group at the 2018 ITU Aquathlon World Championships in Denmark.
But by 15, she was throwing up everything she ate and doctors still couldn't find a reason.
Carson hit her lowest weight of 37 kilograms in February 2022 and started getting hospitalised weekly. She also started needing a jejunostomy tube to eat. Her recurring hospitalisations coincided with her experimenting with getting back into sports and included abnormal heart rhythms and tube infections from the pool.
After years of agonising over her illnesses, Carson finally got diagnosed this year and many questions about her health were answered. Her laundry list of chronic illnesses includes classical Ehlers-Danlos syndrome, dystonia in her hands, gastroparesis, median arcuate ligament syndrome (MALS), superior mesenteric artery syndrome, Nutcracker syndrome, and IVC thrombosis.
Unlike most 20-year-olds, Carson spends her days worried about throwing up and lives with regular extreme pain.
"You've got to be prepared to randomly throw up bile or get awful cramps or have a MALS attack. It's literally the worst pain.
"Or for your hands to have a dystonic attack or for your bowel to absolutely rip like pain. Or peeing every single 15 minutes sometimes. It's real constant and you've got to be prepared for all of it," she told Newshub.
"Everything I eat, I'm going to vomit. It will sometimes come up 16 hours later. My food sits in my stomach."
Training for a triathlon - or being an athlete - requires a high-calorie intake to fuel your body. To reach this, Carson admitted she went against doctors' advice and trained her small intestine to cope with "ridiculous amounts" of the highest-calorie feed formula to pump through her feeding tube overnight. She did this, she said, because despite it putting her in crippling pain, she wanted to gain weight and get back into sports.
But she knows it's risky doing this and doesn't recommend others follow her lead.
"With me being on the high feed rate I often end up in a lot of abdominal pain as I am aware I am not fully tolerant - but I do it because I want to do sport and will do anything," she said.
Carson is critical of doctors in New Zealand who in the past misdiagnosed her with "all sorts of things".
"They ended up sending me to psychologists and everything. I was diagnosed with anorexia and I believed them," she said.
"Honestly, [they would say], 'Just don't throw up, just don't throw up'. And I'm like, 'Well, I'm sorry, I can't help it'. And I was always apologising for it."
All of her compressions were diagnosed by a doctor in Germany, and a doctor in the United States also picked up on her MALS. Carson is now planning a trip to Germany in July so she can get life-changing surgery.
The 'screw it' moment when Carson decided to get back into sport
Four years ago when doctors told her she couldn't do sport anymore, Carson took that as a challenge and decided to take matters into her own hands.
She was bedridden at her lowest weight, but reaching this point was a watershed moment for her and she decided to change her mindset towards her chronic illnesses.
"I was like screw it. I'm going to find a way [to get back into sport] because someone has to do it one day, and that's why I'm doing it. I want to show others," she said.
"I just kept seeing it, all these stories of people that literally have the same thing and it's always, 'I can't go to uni, I can't go to work, I can't do this'. And I was living that reality. I just couldn't take that anymore."
She attributes a lot of her success so far to navigating the "mind game" and persevering through mental barriers. But despite her determination, just getting through training can be a chore.
"At training, [I'm] dislocating all the time. It's constant because of Ehlers-Danlos … It's really hard," Carson said.
"It's as hard as not doing it because if you're not doing it, it's like, okay, yeah, you're sick enough to not be doing it. If you're doing it, you're expected to be 100 percent, whereas I'm never going to be either."
"Don't say 'why me', say 'try me'"
Carson hopes her ambition of being a high-performing athlete will inspire others who also have debilitating conditions who believe this could hold them back from pursuing their dreams.
Her favourite quote is "Don't say, 'why me', say 'try me'". To her, it means her mind has control and she chooses whether she can do something - she doesn't let her body decide for her.
As the first tube-fed triathlete, forging her own path to be an inspiration to those wanting to get into sports has been empowering.
"I look back at what I used to look like and what I was doing a year ago, and I'm like, 'Holy shit, I did that'," Carson said.
Her ultimate mission is to encourage people to chase their dreams - within reason.
"The last thing I want is for people to get hurt but I do want them to be aware of the power of the mind," she said.
"When I was lying on my death bed, I would envy people who had the chance to go do fun or adventurous things, but they wouldn't and that's when I realised how precious each day is.
"No one knows what tomorrow holds, so chase the dreams now, stop waiting, stop saying 'Why me', start saying 'Try me' and go live your beautiful life."
If you want to follow Carson's journey, you can check out her Instagram here.
