That's So Chronic: Jess Brien on Her MS Diagnosis at 21, Being a ‘Medical Mystery' & Finding Humour Along the Way
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Loading... - Charlotte Reid
- 23 Dec 2021
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When doctors suspected that Jess Brien might have Multiple Sclerosis (MS) they asked her if she knew what it was, and Jess didn’t have to hesitate.
“It was like, ‘Yip! That’s what Sarah Potts on Shortland Street has!’”
In a cruel twist, right as Jess was being diagnosed with the very same illness, a storyline was ramping up on the show that saw Sarah get very ill and then eventually suddenly pass away from a deadly virus.
“It wasn’t great timing,” says Jess with a laugh. “I was only 21 and here was this woman – the only person I really knew who had it – who was really, really sick with it.”
MS presents differently for everyone who has it – it’s symptoms and prognosis differ from case to case and Jess found herself searching for stories similar to hers.
Then, years later, just as Jess was getting her head around the diagnosis, the symptoms and the many different treatments she needed to take, she was dealt another blow when a routine MRI took things down another dark path, where she was suddenly a medical mystery.
Jess found herself searching for a community to chat to about what she was going through. She wasn’t just looking for people who had come out the other side and had great stories to tell about their recovery, but she wanted to hear from those who were still in the trenches, figuring things out and living day-to-day with worrying symptoms.
It got her thinking, if she was looking for that – surely she wasn’t the only one.
Then, she saw something that only confirmed it. She came across the story of Kris Hallenga – a British woman who was living with breast cancer and documenting it online, as well as in a BBC documentary.
“There was something she said on a podcast that really resonated with me,” says Jess. “She said, about that BBC doco, ‘I was really keen to make it because all I’d ever seen on TV was shows or films ab0ut people who either survive it or die from it and there was none of this in between phase of actually living with it so I was really proud to get out there.’
‘It was like, ‘Yeah! Where are all the stories of people living with things? Not dying of it, but simply living their lives with these things? Why do I have to feel so alone with all this brain drama? Surely I can’t be the only one. So it was on that bus trip to Queenstown, listening to her, that I decided I wanted to start a podcast.”
Now, That’s So Chronic has a solid following, and each week she shares patient stories and discussions while “having a laugh and keeping it real”.
She’s now spoken to dozens of people, including sufferers of PCOS, Endometriosis, breast cancer, Crohn’s and Hodgkin’s Lymphoma. But no matter the illness her subjects are facing, she says there’s always one thing they all have in common.
“They always say, ‘Oh, other people have it so much worse,’” says Jess. “It’s like, no matter what they have, they always say they don’t have it as bad as others.”
It’s something that comes up – without fail – when she’s first talking to people about coming on her podcast, with some even saying they feel like a bit of a fraud talking about their health in comparison to what other people are going through – even though they might be facing a debilitating diagnosis, chronic pain or cancer.
It’s a sentiment we’ve heard echoed time and time again ourselves in this Invisible Illnesses series. One woman even said, “Are you sure you’re okay having me a part of this? I mean, I’m not good, but it’s not like I’m terminal.”
This woman had spent years bed ridden and was in daily pain, but still, she was mindful there were other people who had it “so much worse”. Yet still it’s something that – mostly women – feel they’re not really entitled to talk about. Read More…
