Inspiring Lives: Clare Reilly

Kim: Welcome to the Inspiring Lives series. I'm Kim Repcak and today I have the absolute pleasure of interviewing Claire Riley. Claire hosts an international podcast series called MS Understood. During this episode, Claire is going to share her insight that she's gained through interviewing over 50 fascinating people from all walks of life, including comedian Tim Ferguson, Emily Padfield from the Netflix series Wing in the Wilderness.

As well as speech pathologists, teachers, journalists, artists and advocates, just to name a few. Each delve in and describe how MS has impacted their lives and the different ways that they've been able to overcome some of the challenges of MS. Claire herself was diagnosed with MS in 2017 at the age of 32.

Claire is a busy mum who juggles parenting, studying, facilitating an MS group and hosting this fabulous podcast. Claire describes herself as an advocate who is passionate about simple living. She tries to inspire others to adopt a slow and conscious lifestyle through MS storytelling and awareness. A big welcome Claire.

Claire: Thanks so much for having me.

Kim: It's an absolute pleasure. Firstly, a big congratulations on developing your podcast. Can you tell the listeners a little bit about what inspired you to start the podcast?

Claire: Yeah, thank you. It's been an incredible adventure. I first decided to start it, well, when I was first diagnosed, it's what I was looking for.

So I just really wanted to hear stories from people who were living their life and had MS, and it was just not something that I found that was out there, so I know that there's podcasts about MS and I know that there's so many amazing resources out there. But I really just wanted to hear from regular people living their life with MS and how their lives maybe changed or didn't change and how I could relate that to my own.

And so I yeah, just reached out to a few people and, and got it started.

Kim: That's fantastic, Claire. So it took a little bit of time.

Claire: Yeah, so it took time. I think we all have a stage of time where we really have to come to, come to some kind of acceptance of our diagnosis and I definitely was in denial for quite a few years.

So I think it had been two and a half, three, probably three years almost before I decided that I was ready. Or, not even decided I was ready before the idea came back to me as something that I could do and share with the world. And then I think at that stage, I was comfortable talking about my diagnosis.

Whereas before that I was really still quite unaccepting of what I was living with.

Kim: I hear many people, Claire, talk about needing to get their own head around it before talking about it with others. And I noticed in your podcast, you talk a lot about the healing involved in storytelling.

Claire: Yeah, I think the more I tell my story, and I think it happens with, with not just diagnosis, but I'm one of those people is if you tell a lot of people the issue, it kind of dilutes itself.

So I feel like the more I tell my story, the more It has less grasp or, ownership over me and the more in control of it that I am. So yeah, being able to tell my story, but also wealth of knowledge I've gained from listening to so many guests tell their stories about what they do and how they do things and how they manage their living with this disease has been incredibly healing.

Kim: It's been a two way process that the speakers have obviously been very giving of their time and their strategies in living well with MS, but you've gained a lot of benefit from it too along the way.

Claire: Oh yeah, absolutely. I think, I mean, initially it was purely selfish creating the podcast and I obviously hoped that someone else would get something out of it, but what I've gained out of it is an incredible wealth of other people's knowledge of how they've lived with, for 10, 15, 20, 30 years of living with multiple sclerosis.

And I think also how things have changed over that amount of time and given me ideas and suggestions of different ways that I can manage my own life and then obviously I hope that other people get something out of listening to the episodes also.

Kim: You've got people talking about physio, speech pathology, but also spirituality all sorts of different techniques that they use to be able to support them.

So you're seeing it from all sorts of perspectives as well as different ages. You've got someone that spoke about being diagnosed at the age of 11. Others

that have been older when they've been diagnosed, and I think it's that diversity that gives your podcast such richness.

Claire: So what I've wanted to do is tell as many different stories as possible so that everyone who listens can find something that they relate to because I think more and more these days we are seeing abled bodied people with MS, but I do know that as a kid when you grow up you know, do the MS read a thon and and those sorts of things.

It's the stories that we were told then are not the stories we're being told now. And the stories we told then were that you would end up in a wheelchair. I needed to be able to hear the story that was someone going hiking. Or someone running around playing soccer with their kid. Like I needed to be able to hear the stories that I wanted my life to look like.

Kim: You're creating an MS community, Claire. People are able to find connection and connection is so vital, isn't it, to not feel so alone.

Claire: So, yeah, we're just trying to be able to create a community so that everyone has someone that, or a story that, yeah, they can relate to.

Kim: Absolutely. So you've interviewed a diverse range of people, Claire.

I'm just wondering if there's someone in particular who stands out to you and why that might be.

Claire: I've honestly gotten something out of every episode. You know, I think about, I'm now seeing an exercise physiologist and I Very early on interviewed Gillian Kingsford Smith who has also been on the MS podcast and she saw an exercise physiologist so I jumped at that.

I interviewed Tim Ferguson which was amazing and hilarious and an incredible opportunity for me.

Kim: Tim Ferguson. I think what's really important with that is that it's showing people living well with different types of symptoms and different ways of managing MS. It's so diverse which I think is really great.

Claire: Yeah and so, you know, something he said in his episode is that the only people he's ever met with MS is really busy people with full lives and we get MS because we have to slow down. And I think it's, you know, it's really one of those things that I've spoken to so many people who really are living

such full, lives that it is really inspiring to speak to these people who live well regard, you know, despite all of the odds.

Kim: Other people have also talked about the importance of really taking care of your mental health and emotional wellbeing. Many of the people you've interviewed I noticed talk about the grieving process and that it can be up and down with MS.

Claire: Grief is an incredibly difficult thing to live through and to understand from within it and from outside of it and I think it really isn't the linear process or the five grief stages that we once were aware of.

It really is a day by day thing and I think part of that is around not having, not making yourself move through that and not being ashamed or upset if you have a day of being deep in grief because our illness is never going away and the grief of the life that we could have had or we believe we, we should have had, that grief will never go away because we're never getting that life back.

And I think we can live incredible lives and we can be inspiring and be satisfied with what we're doing and still have moments of deep grief, of missing what we want.

Kim: That's a really important message that does come through in your podcast. Grief isn't as simple as it was once, you know, measured in those five stages.

And the importance, I think, of reaching out when you need support.

Claire: It's pretty crucial that everyone sees a good therapist or psychologist after a significant diagnosis, even if you don't think you need it right away. It is really an incredible resource just to sit with someone who's kind of separate from what you're going through and talk through, even if you go once or twice, but I think it's a really important resource to be able to access.

Kim: Of the 50 plus people, Claire, what have been some of the biggest challenges that you've seen that they've faced?

Claire: I think grief is absolutely up there. Moving through that grief and really finding acceptance around the diagnosis, because as I said, grief. Our illness is never going away and the grief will stay with that and the acceptance around it can be as fluid as the grief.

You know, some days you can be on top of the world and I'm doing this and this is amazing and my life is great and the next day, you know, you're really

thinking this sucks and why me and I hate it. And I, I think the grief and the acceptance. Accepting that this is who you are is incredibly difficult.

Yeah, I really think of all of the people that I've spoken to it's the emotional challenges that are the hardest.

Kim: And I've noticed many also talk about the difficulty around disclosing their MS. And some have chosen not to and some have chosen to.

Claire: I think particularly at work, so obviously everyone who speaks on the podcast is comfortable enough to share their story publicly in, in some regard. I think work can be difficult, disclosing at work and disclosing amongst wider community can be difficult because people have that sad voice at you that, Oh, I'm so sorry. And it's really difficult to be someone's pity party all the time. And you just want to be able to get on with your life and do. you know, life to the best of your ability and it's hard when the people around you always look at you like a sad sack. Yeah, disclosure can be difficult. I think on the other hand is most people who I have spoken to their version of not disclosing and then choosing to disclose. There's such a relief around not hiding it anymore.

And I think that comes with a level, all the hiding, the not disclosing often comes with a level of shame around, around your diagnosis. And, and that's just as difficult, I think, because as, like I said, the acceptance and the grief is, is the shame of not being able to do. things anymore.

Kim: Hearing other people coming out and talking about their MS, which again, your podcast does so well.

It makes people feel that they're not alone. You know, there's no shame at all in having MS. So I think that that does serve that great purpose. One of the best comments I heard on your podcast was MS is a part of you but does not define you.

Claire: And it's something I say all the time is that it is something I live with.

And I do so many other things, you know, like you said at the start is I love to live this kind of the ideal, the simple life and we garden and have chickens and I go for a swim every day and there's so much more to me than my diagnosis.

Kim: Absolutely. Many of the people you've interviewed really do epitomise this of living well with MS.

I particularly loved your interview with Callie Wright, an MS advocate who walks across the Great Wall of China in red high heels. Can you tell us a little bit more about her story, Claire?

Claire: Yeah, she, I mean, definitely head over to MSUnderstood and listen to the episode. But she hiked the Great Wall of China as a fundraiser for MS and she can wear high heels for longer than she ever could before because there's no pain or she can't feel her feet at all.

So the pain from wearing high heels doesn't affect her. So she decided to hike part of the Great Wall of China in her red stilettos just to prove it to everyone that she still could.

Kim: That's fantastic.

Claire: Yeah, it was.

Kim: Another quote that I heard, so much is happening to a person more than you can see and I thought how true is that and in particular with MS and the invisibility of some of the symptoms?

Claire: Yeah, and I think like you said it does absolutely relate to MS, but I think what's really so poignant about that statement is that there's something happening to everyone so we can be in grief or shame or not accepting our diagnosis, but the person next to us MS is probably, possibly also going through something similar, their parents might be sick, their dog might have died, you know, like everyone's going through something and all it takes is just to be a little bit kinder to all of the people that you pass in your day, whether or not they're living with MS.

I think, like I've said, is everyone's living with something that is either directly or indirectly relating to them and how they live their life.

Kim: Really important message. Another interview I thought great as well was the one that you had with Annie Snowden, speech pathologist, and it was great the way she was able to talk about the importance of accessing support.

And she also tapped into MS's Employment Support Service. And it was just great to hear from a speech pathologist perspective. I guess she's been the health professional and now she's the client with MS. It was great to hear her dual perspective on it.

Claire: Yeah, really I'm really grateful to be able to share stories in that perspective.

I've had a few professionals or nurses or I spoke with a lawyer quite early on, and Being able to share stories from, you know, particularly health professionals who were working with people with chronic illnesses or disability and then be diagnosed with that and have to then come to terms with their own diagnosis while still working in the field has been quite remarkable to be able to share.

And I think, like you said, the MS Employment Service is an incredible resource and there are so many amazing resources out there that we have access to that can help us. you know, maintain our work or help with our mental health or, you know, even connect us with community of other people living with this illness.

So I think it's really important to be able to share the amazing resources that we have access to.

Kim: As a health professional, you can advise someone, you can provide information, but it's not the same as hearing it from someone who's actually receiving it. To hear how exercise physiology helps the actual person, or how speech pathology helps or myotherapy, whatever the therapy is, but to hear it from the person is so powerful. And that's what's great. I like the diversity of those over 50 people now that you're interviewing, Claire. And I understand you've now turned your attention to getting the other side, the flip side of the professionals working with people with MS.

Claire: Yeah, I decided I've had a lot of people reach out actually and ask for interviews with family members of people with MS. So that's something that I'm going to be looking into just to be able to provide some support to the supporters or the support people of those with MS. But yeah, I really wanted to be able to start sharing given my, my original reason for starting the podcast was to find stories I related to. Then getting so much out of it as being able to find a really great team of medical supports for myself is to be able to offer to others different opportunities or different options for who they can use for their support.

So I've got an interview with Sally Shaw coming up about therapy and that'll be an amazing thing. Like I've said, I think everyone should go to therapy, but I also have an interview with someone who used to work at the NDIS. Because I get heaps of questions about how to write a good plan and I know you guys have an amazing support with that.

Kim: Absolutely. I guess the other stream of people I've noticed in your podcast are the people in social media. You've got quite a lot of people that are on Instagram and a lot of people in the MS community, which is great.

Claire: Yeah, I think more and more the MS community, particularly on Instagram, It's becoming a super supportive place to be, and that's where I definitely find most of my guests on Instagram.

I have people, either I find them or they're reaching out to me to be able to share their story so that again, they can find, or they are offering someone a story that someone else could relate to, but yeah, the MS community on Instagram is an incredibly supportive place to be. So it's it's been nice to be able to find people that way too.

Kim: And it's great because you're, again, it's a ripple effect, isn't it? You're getting them to tell their story, but they're also promoting their Instagram or whatever cause that they're supporting. It's a great ripple effect. MS.

Claire: And it's a great way of being able to connect with people from all over the world.

Kim: One of the questions I think that's a great one, and I think it's one that you often use too, Claire, and that is What lesson would you pass on to someone newly diagnosed, now that you've gathered so many different tips and tricks around all the interviews you've had?

Claire: So you don't need to delve in and read all of the information at once.

You're going to have MS for the rest of your life. So take your time with that. I think It's a, you know, around that grief and acceptance is it doesn't have to happen today or tomorrow and it might happen tomorrow and then it might not happen the next day. So really go gentle with yourself around being angry.

I think it's, it's allowed and we're allowed to be angry that this has happened to us.

Kim: Some of the people in your podcast also talk about the importance of living in the moment and making the most of each day.

Claire: Yeah, it's definitely since diagnosis and since speaking with heaps of people obviously with multiple sclerosis diagnosis there has been a lot of talk about yeah, really embracing every moment and I think the last year and a half

or the last couple of years has really heightened that for everyone, because we don't know what tomorrow's going to look like.

No one does. And we all have that, you know, live like you might get hit by a bus tomorrow, which is very morbid, but people say it all the time. And I just don't know that we do or I definitely didn't. And now it's really as though like today really could be my last day of walking and it's not great walking but you know tomorrow I could be in a wheelchair so I should go for a walk today or go out for lunch because who knows we might be in lockdown again tomorrow you know so it's all these but it's all of these things around embracing life as it is because it really is a one off opportunity.

Kim: Definitely coming across in your podcast and that is that for some people it's a bit of a wake up call and that we can take a lot for granted and perhaps it is a diagnosis, maybe not MS, but something, some other significant change that makes you really look at what you do have.

Claire: Yeah, absolutely. And I think like you said, exactly, it doesn't have to be MS.

It could just be anything.

Kim: I think your podcast has had such an impact on so many listeners again with all those different perspectives. Yeah, a great tool for so many people and you've had mums that you've interviewed. I think there's a mum that you interviewed who has a particular Facebook page to help other mums.

You had a really good comment about telling your children. Great learning, I think, for other parents that may have just been diagnosed and want to know how to approach that topic of how do you tell your children.

Claire: Yeah, we talk a lot about or I had quite a few episodes there where I talked with mums who had to figure out the best way of telling their kids, and some people had told them and some people hadn't told them. And I think, again, it's just telling enough stories so that everyone can find something that they relate to and are comfortable with. Yeah, Clarissa has a Facebook page called Multiple Sclerosis Mummers, where she, there's a community of yeah, mums, she says, for mums, baby mammas and anti mammas. So I think it's for women in general who can go and be a part of that, but yeah, I think there's, I mean, there's so many amazing Facebook groups and Instagram communities and even in person coffee catch ups where you can be a part of a great community of support.

Kim: Great ideas around catching up with other people, people that get it. And I think that's one of the bonuses. I think you ask sometimes one of the questions is around, is there something that you've gained? It's funny to look at it that way, but people talk about that they have more of a community now since they've been diagnosed that they're actually more social and they have been before.

Claire: Yeah, yeah, absolutely. I think most people, I always ask at the end of. Every episode, what's the best thing to have happened to you because of your MS? And most answers are either the community they've connected with, or the way they've embraced life since diagnosis. And I think another one is really looking at people's health.

So a lot of diet changes and really focusing on The things that you can control now, I suppose, so eating really good food and, and doing as much exercise as you can and, and yeah, finding a really good support. I think a lot of people have spoken about cutting off the things that no longer serve them, whether that's food or people or work or lifestyle elements.

But yeah, you really, it really makes you realize how much life matters.

Kim: It sounds like you do a little bit of an audit.

Claire: Yeah, yeah, absolutely. Definitely, yep.

Kim: It's a great way of looking at things, isn't it? And it makes more time for the good things. I notice that you get quite a lot of feedback from listeners.

Claire: The, the reason it's able to keep going is because because of all the guests, I couldn't do it on my own. But the reason it is still going is the, the messages I get in my Instagram inbox and emails that I get or yeah, mostly those two, but the feedback is incredible and it's, it's amazingly supportive of the podcast.

But also, you know, people are saying all of, you know, thankfully all of those things I've said, so they're feeling a sense of not being alone and finding a community and being able to start to put a bit of acceptance around their diagnosis, and I think that. To me, it's the whole reason that it's able to keep going.

It's been going for over a year and, and it will keep going until those messages stop, I'd say.

Kim: So how do people get involved? How do people reach out to you, Claire?

Claire: Yeah, absolutely. So mostly, as I've mentioned many times, the best place to find me is on Instagram. So it's just Claire Riley. So C L A R E dot R E I L L Y.

And you can, if you're interested in sharing a story, You can just send me a message on Instagram and we'll sort something out and yeah, you can find the podcast on anywhere you listen to podcasts if you just search MS understood. Hopefully you find a story that you relate to.

Kim: Thank you so much, claire, for joining us today and for developing the podcast, just awesome.

Claire: Well, thank you so much for having me and being able to share it with you guys.

Kim: Thanks for listening in today. We'd also love to hear from you. You can subscribe to MS. Podcasts. You can email us any topics you'd like covered or send feedback by emailing MS. Connect at MS. Or get in touch by calling MS Connect on free call 1800 042 138. Thanks for your company.