When Portarlington mum Clare Reilly was diagnosed with multiple sclerosis, she found it hard to find inspiring stories of people who had learned to thrive with their illness.
So she decided to tell them herself – through a podcast, MS Understood.
Clare had no experience with podcasting but decided in late 2020 she wanted to share the stories of people living with multiple sclerosis and how they managed to succeed.
“For two and a half years after I was diagnosed, I ignored my diagnosis and pretended it would go away,” she said.
“It wasn’t until we moved back to Portarlington that I realised it wasn’t going away and I had to learn how to live with it.
“I was in a headspace at the time where I wanted to hear stories of people with MS who were active and running marathons, who were working as lawyers or teachers – those real life stories of people living with MS.
“But I found it really hard to find those stories. I found it hard to find anything that related to my life because most of the stories were about people with different symptoms who were in wheelchairs.
“I’ve found out that while that can happen, for the majority the symptoms aren’t that severe, so I decided I’d reach out to a few people and tell the stories I wanted to hear.”
The Portarlington mum’ s journey with multiple sclerosis started in 2016 when she began suffering pain in her lower back.
“My husband and I had a two-and-a-half year old at the time and we had just built our house and my lower back had been really sore,” she said.
“It was a weird pain because it was like I couldn’t hold the half of my body up, so every time I’d be standing up, I just slowly bending over from the hips and I couldn’t stop it.
“So I went to a physio and she was like, ‘this is just kind of out there’. But then she took some leave and so I went to a spiritual healer because I was trying everything to get this fixed.
“Finally my parents pushed me to go to the GP and he almost immediately sent me to a neurologist, who told me it was either a benign brain tumour or multiple sclerosis.”
Clare said it was about six weeks between that day and her diagnosis.
“I spent six weeks with no idea whether it was going to be benign brain tumour or multiple sclerosis, which was really tough,” she said.
“In that time, we applied for this job up in Gippsland at an outdoor education centre, and as just as I got my diagnosis, we got the job.
“So we moved and I ignored it for the next two and a half years. I just focused on the work and when I had a day where I couldn’t get out of bed because I was so tired, I blamed the job and not the MS.
“But it wasn’t until we finished our contract and moved home that I realised I had MS – which sounds silly because I always knew, but that’s when it hit me.”
Clare said she had difficulty walking because the multiple sclerosis had weakened her hip flexors, but she was thankful she hadn’t experience cognitive issues associated with the disease.
After getting the help she needed for the first year back in Portarlington, Clare made the decision to start the weekly podcast and in October 2020, she released the first episode.
“I’d never done anything like it before – I still don’t really know what I’m doing when it comes to the technical side to be honest,” she said.
“I remember for the first few episodes I had reached out to some possible guests on Instagram and they were great about it, but I was so nervous for the interviews.
“We were doing it over Zoom and I was probably quite stiff and followed my list of questions really closely … but it was a lot of fun and everyone had interesting stories to share.
“I found it really beneficial for my own mental health around my diagnosis.”
Clare said for the first year of the podcast she focused on telling the stories of people who lived with multiple sclerosis.
“I got to talk to people like Tim Ferguson, the comedian who was in a band called [Doug Anthony All Stars] and a English woman, Emily Padfield, who was on a Netflix TV show called Win the Wilderness,” she said.
“I’ve interviewed a bunch of people from different backgrounds who have done amazing things, like a woman who’s hiked the Great Wall of China in stilettos since her diagnosis to raise money, lawyers and teachers and I’ve got one coming up where interview a non-binary person with MS.
“I’ve got the privilege of just being able to share as many different stories as possible, but after that first 12 months, I got what I suppose I needed out of the podcast, so I branched out.
“I’ve started, every second week, to interview professionals, so therapists, neurophysios, physios, sex therapists, people who used to work for the NDIS.
“All of those people who can support people living with MS.”
Now more than 70 podcasts in, Clare said she took something from every episode, but one with Melbourne-based psychologist Dr Sally Shaw stood out to her.
“Every episode I do has shaped the way I look at my health and how I of manage my medical team, but there was one episode that stands out where I interviewed a woman called Dr Sally Shaw,” she said.
“She’s a psychologist who has MS. Just speaking with her, given that she’s a psychologist and I’m studying psychology, to hear her perspective as a psychologist, but also with the understanding of the diagnosis and going through that process was really great.
“She shared an incredible analogy that has stuck with me – we are the CEO of our own multiple sclerosis business.
“We employ the neurologist, the physiotherapist, the therapist, or whoever, because they are the specialists in their field but if we don’t like them, or if they’re not doing the job, we’re allowed to find them.
“To me, that’s really important – it’s about taking ownership over my diagnosis and my own life, which when you’re in this situation, you can get pulled around a lot.”
Clare said she hoped to see the podcast continue to grow and develop because “there’s still a lot more stories to tell”.
“I say this all the time but I couldn’t do it without the guests and I wouldn’t do it without the feedback,” she said.
“The feedback I’ve received from people had been great.
“Hearing from listeners that they’ve just devoured the first however many episodes while waiting on a diagnosis or things like it’s made them not feel so alone [are why I do it].
“That’s what I wanted when I was diagnosed – I wanted that support where I could just put my headphones in and I didn’t have to tell anyone. But I wanted to feel not so alone.
“From the feedback I get, that’s what I think I have been able to provide for other people, and that’s why I do it.”
MS Understood is available on all major podcast streaming platforms.