A Host, A Disease, And The Power Of Shared Stories

What if the cure for isolation isn’t a fact sheet but a voice that sounds like yours? Colleen opens up about why she created a space where people with multiple sclerosis can hear themselves reflected back—without any pressure to be anything other than themselves.

If you’ve been waiting for the “right time” to speak, consider this your nudge. You don’t need polish or perfect words; you only need your own experience. By sharing, you might give someone the relief of feeling understood on a hard day.

And if you’d rather just listen for now, that’s welcome too—connection doesn’t demand performance. Follow or subscribe for more real-world Aussie MS stories, share this with someone who needs to feel less alone. Ready to add your voice to the chorus? Reach out and let’s keep connecting one story at a time - msmspodcast@proton.me

Chapters

• 0:00 Why This Space Exists
• 0:23 Loneliness And The Need To Be Understood
• 1:01 How The Podcast Began
• 1:46 Quiet Submissions And Why Sharing Is Hard
• 2:23 The Power Of Story
• 2:47 Not Science, Just Honest Lives
• 3:30 Finding Common Ground In Symptoms
• 4:19 From Lost Identity To Meaning
• 5:18 An Open Invitation To Share

Transcript

Speaker: 0:00

Hi everyone, it's Colleen here, your host at MSMS, The Many Stories of Multiple Sclerosis. Now this episode isn't going to be an interview, I'm not actually talking with somebody else. It's me and my MS talking with you. When I first started this podcast, I didn't know if anyone would listen. But when I was first diagnosed, I just knew that there'd been times when I'd felt like nobody knew what I was dealing with, and nobody could, unless they were confronted with what MS does to us every single day. But you know, I had people around me, but there's this different type of loneliness, and isolation, it's different, a lonely isolation where I yearned for understanding, even though I was surrounded by people who did care. I think I simply wanted to hear how other people handled this disease MS. I wanted to know other people's stories from people who understood as well, who really knew. And that's kind of a part of how this podcast began. Now over time I've spoken with some incredible people who've shared their their stories with us. They've talked about their ups and downs and their fears and their triumphs. But lately it's been very quiet here. People haven't been reaching out to tell their story. And I understand that, I think we all do. It's difficult, um, it's emotional, and sometimes you're just not ready. Just not ready. But I also know that when we do share, something powerful happens. Someone listening feels less alone. Someone else out there recognises their own story in your story or my story, or someone realises that while MS affects us all differently, there's still common ground. I think that's what sort of keeps me going. This podcast isn't about statistics or science. You will know I don't speak with doctors and you know researchers and that because that's, it is all out there, and I don't feel qualified myself to even speak with those highly qualified people. .. just being honest. But I'm happy to speak to people that I feel I understand, and that's you. That's you. And while I understand you, I think you understand me too, because we are talking that same language. We're talking MS, and that's a specific kind of language, isn't it? And it takes some understanding. So, no, I don't talk about uh well I do talk about research, but I talk about it only from what I find myself. From my own research, I'm happy to share that, and I do, and I hope that helps people when I have done that. But this podcast is more focused, it leans toward you and me. All of us. It's about connection, it's about those moments of 'I'm not the only one'. It's about that realization that we have and those things, and that happens that happens when we speak with each other. There are so many things that we think we're a bit freakish, you know, like that's only me. Well, it it probably isn't. It probably isn't only you. Someone else will have something, and if it's not exactly the same, it'll be damn closed. So I think it's those moments when we realise somebody else is dealing with what we're dealing with. It just makes the world feel a little bit less heavy. When I was first diagnosed, I didn't know well, I just thought that I'd lost everything. Everything that defined me, who I was, you know, it just all went. I didn't know who I was. It's like, how did this happen? What is this? I was so unsure of everything. And I'm sure that you might have felt similarly, but slowly through through storytelling, through your stories, I found a way to turn something difficult into something meaningful. Well that's how I that's how I talk to myself, you know. Um and I hope I hope you feel the same that that our stories are helping to turn what's difficult into something that means something for other people, that's helping other people. And that's why this podcast matters. It's not just a podcast, it's a space where we show up for each other, even if we never ever meet. It's just proof that connection can exist in so many ways, even through a microphone, some earphones, headphones, through the internet. So if you've ever thought about sharing your story, you don't need to be confident. You just need to have a real story that's yours. You just need to be you. Because every story, every person's experience of this disease MS, it adds something important to that bigger picture because together we show what life with MS really looks like. It's hard, yes, but it's also strong and it can be funny and it can be very brave and hopeful. Thank you for listening. Thank you for being part of this community and for always reminding me why it matters. And at the end of the day, it's not about MS, it's about us. Thank you so much for listening. If you'd like to share your own story on MSMS, this podcast, I'd love to hear from you. You can reach me just by emailing MSMS@ proton.me. That address is in the show notes. Just send that email to me and say that you might be interested in sharing your story and we'll start from there. I'm Colleen Daniels. Thank you so much for listening. Until next time, take care, and we will keep connecting one story at a time. Bye now.