We’re putting the spotlight on Invisible Illnesses in this new series. Are you one of the many Kiwi women who suffers in silence?
In this series we’re talking to Kiwi women about their health battles with Invisible Illnesses, their journeys to being diagnosed and what’s given them relief along the way. Our hope is that by sharing these stories, they may help spread awareness of these illnesses to other women, giving some tools to help, inspiration to those who can sense something isn’t quite right with their health to continue to search for answers and ideally, get diagnosed sooner! If you’d like to contribute your story, please drop a line to [email protected]
Here, we talk to Jess Brien – the creator and host of the hit podcast That’s So Chronic. Jess takes us through her diagnosis of Multiple Sclerosis, why she started up the podcast and what the one thing is that ALL her guests tell her, regardless of what their illness is…
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.
It’s another one of the many reasons why Jess decided to start talking more about what it’s really like to be living with a chronic illness and normalising these conversations.
Her own journey with chronic illness began while she was in her final year of study at drama school in Christchurch.
For years a few strange things had been happening, but things came to a head when she was in a singing lesson and started crying.
“The crying was pretty normal for me, because singing lessons are really emotional,” says Jess. “But my singing teacher, Ange, was like, ‘What is going on? You’re crying more than usual!’ and I was like, ‘Ange, I can’t see out of my right eye – everything is grey and blurry!’”
Ange encouraged her to see her optometrist pronto – which she did that afternoon. “I even drove myself there,” says Jess. “In hindsight, I’m like, ‘What the hell was I thinking?’”
There, the optometrist couldn’t see any obvious reasons for the disturbances so told Jess it was likely an eye migraine and to go home, rest over the weekend and get back in touch if things were the same.
But by Monday, things were worse. The optometrist referred her to see an opthamologist – but through the public system there was going to be a wait of more than two weeks before her appointment. Thankfully, she called her parents for help, and by the end of the day she had an appointment, privately at 8am the next day.
Unfortunately she was then told that there was likely just two reasons for what was happening in her eye – one, that she had ‘eye flu’ or two, that she had multiple sclerosis. Immediately, Sarah Potts popped into her head.
Then, an MRI showed that yes, she indeed did have MS.
“It was my doctor who told me. My parents came with me, but they stayed in the waiting room, because I thought I wanted to go in myself. He said, ‘Ok, I’ve seen your MRI, I’m not a nuerologist, so I don’t know for sure but there’s a lot going on in there and it looks like you have MS. I just burst into tears. So, then I flung open the door to the waiting room and my parents came in. It was really devastating and really sad.”
Generally in New Zealand you need to have had two episodes or relapses before you can begin treatment, but thankfully, Jess had documented several episodes over the last year or so.
“My friend had Facebook messages where I wrote to her saying, ‘I can’t use my hands, it feels like they’re paralysed! Can you just call me’”
Her jazz dance teacher had noticed she was suddenly having trouble with her coordination and sent her to physiotherapy, where she was encouraged to take magnesium, and she did start feeling better.
She went to play and saw four actors on stage, when it was only a two-person show and documented it – doctors put her dizziness and blurred vision down to crystals in her ear moving.
Thankfully, all her “oversharing” and sending messages about her odd symptoms to friends, meant there was enough to get her properly diagnosed and started on treatment.
Jess was diagnosed with relapsing remitting MS. “So, basically, MS is an autoimmune condition where my immune system is mistakenly attacking parts of my body that it shouldn’t,” she says. “So, for me it’s eating the myelin sheath that wraps around the central nervous system. The way you can think of the myelin and the central nervous system is kind of like an electric cord and how it has that rubber casing around it – that’s kind of what the myelin does. So instead of eating viruses and bacteria, the immune system is nibbling away at that rubber casing of the wire.
“So then, because the central nervous system is how all of our messages go from our brains to the rest of the body, when the message goes down the wire, now it’s got a little speed bump, or a pot hole, so the message gets a bit lost and it doesn’t quite make it to the part of the body.”
“Relapsing remitting means that when I have a relapse – that’s where those legions appear and you might have perhaps a cluster of these lesions, and something starts going on for you, whether it’s lost vision, or lots of pain – or, there’s so many symptoms of MS! But then you recover from those relapses. The other type is secondary progressive MS, and that’s where you aren’t recovering each time, so that’s when things escalate and you can be more disabled with MS.”
After several years of living with MS and getting regular treatments, Jess got an MRI that was completely unexpected. The scan discovered a lesion that looked like PML (Progressive Multifocal Leukoencephalopathy) – a rare brain disease that has a 40% mortality rate and can leave patients with severe neurological disabilities.
When her GP mentioned the three letters, she knew exactly what it was because she had read that one of the risks factors of taking the treatment she was on, was that you had an increased chance of contracting PML.
Her GP tried to calm her, saying they were sure if it was something major the hospital would have already been in touch. “But I just sat in the car park and bawled my eyes out to my mum and frantically called the neurology department at Auckland Hospital.”
Suddenly she was undergoing every test under the sun – scans, blood tests, lumbar punctures, the works. PML was ruled out, but doctors couldn’t quite figure out what this lesion was.
“I was suddenly a medical mystery,” says Jess. “The neurology department called me saying no neurologist had seen this before and I was the only one in the world with it. I mean, I’ve always known I was special, but I knew I wasn’t that special!”
The ordeal really made Jess think about her life and what was important. “For a while there I was contemplating the idea that I might (I say might because I still had an ounce of fight left in me!) die a little earlier than previously anticipated. It got me really thinking about what I want to do with my life.”
And it was in the midst of it all that Jess found herself on that bus to Queenstown, when she decided that a podcast about living with chronic illness was next on the agenda. The performer, actor and yoga teacher is now regularly telling the stories of women – and a couple of men – who are in the midst of their illnesses. And in the process she’s connecting – and comforting – a large audience who are hearing about chronic illnesses in a way that they haven’t been spoken about before.
“When I first started it, it was perhaps selfishly at the beginning, because I wanted to connect with people who were feeling like me, and in fact I was kind of desperate!”
Now, she has loyal followers regularly suggesting guests they’d like to hear from and she has a steady flow of guests wanting to be involved.
If you’d like to tune in, search That’s So Chronic on Spotify or wherever you tune in to podcasts!