Creating opportunities for people with MS to share their stories, find hope and build community.
Claire Reilly recording a MS Understood episode

“In the podcasts, we talk about the hard things, but we also talk about the good things. A lot of people tell me that their lives have changed for the better since their diagnosis. They have been given the wake-up call so many others don’t get and are now living their life unapologetically.”

Clare was diagnosed with MS when she was 32 and eventually started her own podcast series, MS Understood. Here, she shares some of her journey.
 

After a day of gardening, I was washing my hands at the outdoor tap. Bent at the waist, I realised I couldn’t get back up. I crumbled to the ground, turned to my husband and said, “what if it’s MS?”
 
At this stage, I had no reason to think that. I was working with a physiotherapist to improve my lower back pain, to help with my ‘weird walking.’ I was 32, with a 3-year-old son, my background was in outdoor education, where I led multi-day hikes for a living. I was working as a relief teacher and had just finished owner-building our home.
 
I was going to fix my issues and get back to regular programming.

When I finally went to my GP, he immediately referred me to a neurologist - my classic MS gait pattern was a dead giveaway. The neurologist told me that it’d either be a benign brain tumour or MS. To find out my fate, I had an MRI and waited six weeks for the results. Those weeks were hard.
 
When I was finally given the results, my husband and I had just applied for a position to run an off the grid outdoor education centre in Gippsland, Victoria. Our dream was to move to this camp with our son, spend two to three years living in the bush, accessing our home by flying fox over a river and working with young people to connect them with nature - not having to deal with a debilitating chronic illness.
 
We were successful in our application and accepted the position. I didn’t have time to acknowledge or process my diagnosis, so I told very few people and went to run the education centre.

Looking for support on my own terms

During our two-year contract, I secretly looked everywhere for support as I wanted to learn about my disease on my own terms without anyone knowing. I wanted to know what this diagnosis might look like for the rest of my life. I wanted to see others with MS living their ‘best life’ and I wanted to see people living with MS whom I could relate to.
 
I looked for podcasts that I could listen to while feeding the chickens or working in our 100 square metre garden bed but found nothing. Denial was my best friend, it fuelled me and kept me going. But only for so long.
 
Living in denial

Throughout our contract I noticed that the long days, the stress and the far distances I was walking were seriously impacting my symptoms. I noticed more days where I was relying on my hiking poles, more days where I struggled to walk from the homestead to the outdoor kitchen, more days where my husband would push me in the wheelbarrow from the main property to our own cottage. I was exhausted but I blamed the camp, not my illness.
 
I thought that finishing up at the education centre and returning home would improve my symptoms. My husband was tired too, the job was all-consuming. We thought that once we’d finished up and had some time to rest, things would return to normal. And while I watched as my husband’s energy returned, mine did not.
 
Why me?

Grief hit me like a freight train. I was consumed by it. Angry with everyone around me and also sad. Why did this have to happen to me? I was fit and healthy, I ate unprocessed foods, I went hiking. It was all so unfair.
 
At around this time, I began to embrace local therapy supports, both physical and emotional. I started seeing an amazing physiotherapist who showed me that by doing slow, specific exercises, I could start to see a reduction in my physical decline.

A ray of light

Almost three years after my diagnosis, at one of my gym sessions, I remembered my need to hear others’ stories when I was first diagnosed.

By doing regular gym sessions, I had taken control over my worsening symptoms and had started feeling more at ease with my diagnosis. I now felt like I had the headspace to think about creating something that would help others in a similar situation to myself.
 
MS Understood is born

With no experience in podcasting, and no connections with people who lived with MS, I decided to create my own podcast, ‘MS Understood’, where I have conversations with people from all over the world and from all walks of life who live with MS.
 
Initially, I found people on Instagram by searching #multiplesclerosis. As the number of episodes I released increased, people started reaching out to me wanting to share their own stories or suggesting people I could contact. I always felt honoured when people would say yes and so generously give their time, telling their story for me to share.
 
Finding strength and hope through community

I created ‘MS Understood’ because it’s what I needed when I was first diagnosed. I assumed and hoped that it’d resonate with others in the same position. Thankfully, it has. People love listening to this podcast because it makes them feel less alone and it reduces the stigma around living with MS.
 
I love telling all kinds of stories so that all listeners can find something that they can relate to, and each interview has taught me something. I’ve learnt to take ownership of my medical journey, to reach out to different medical professionals, to keep asking questions about how I’m feeling and why that may be. Above all else, I’ve learnt that there is hope.
 
In the podcasts, we  talk about the hard things, but we also talk about the good things. A lot of people tell me that their lives have changed for the better since their diagnosis. They have been given the wake-up call so many others don’t get and are now living their life unapologetically.
 
If you’d like to listen to Clare’s podcasts, you can find them on Spotify or Apple Podcasts by searching ‘MS Understood.’
 
MSL offers a range of podcasts which cover some common MS symptoms and wellness topics, providing you with some practical strategies to improve your overall health and wellbeing. Explore our podcasts



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