Voiceover
Welcome to the Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments and advocacy efforts, as well as candid and informative interviews with our community, those living with MS and their families and carers, together with leading clinicians, researchers and advocates.
Jeremy Henderson
Hello and welcome to The Raw Nerve. I’m your host, Jeremy Henderson. Today on The Raw Nerve, we’re spotlighting MS carers, those in our community caring for people living with multiple sclerosis and the issues they face as we mark National Carers Week.
We’re going to explore the lived experience of MS carers, their challenges and wins, and we’ll also talk about the role of MS Australia’s Lived Experience Expert Panel.
National Carers Week raises awareness and support for unpaid carers across Australia. National Carers Week is a time to recognize, celebrate and raise awareness about the 3 million Australians who provide care to a family member or friend. Now this year’s theme is, you are one, know one or will be one. Today we’ll be speaking with two of MS Australia LEEP members who represent the important cohort of MS carers.
Let me first welcome into the studio, Rebecca Small from New South Wales. Welcome to you, Rebecca.
Rebecca Small
Hi, Jeremy. Thanks so much. Great to be here.
Jeremy Henderson
Now, Rebecca, I’m keen to hear about your lived experiences as an MS carer for a family member living with MS, your thoughts on the system and the support needs for carers and engaging with other carers through your work as an occupational therapist, treating many people with MS. But I wonder to kick things off, I wonder Rebecca, if you’d like to share a little about your experience as a carer for a family member with MS.
Rebecca Small
Yeah. So caring, I guess it doesn’t always look the way people would expect. ah When my family member was diagnosed with multiple sclerosis, it’s that kind that hides behind a steady gait and very composed exterior. So I quickly learned that support would be less about physical assistance and more about understanding the invisible.
So there are no walking aids, but there’s cognitive and physical fatigue, memory lapses, difficulty multitasking and processing rushed instructions, as well as the emotional weight of remembering what once might’ve been easier. So the symptoms can be unpredictable, subtle, but deeply personal, I would say. So my care can look like noticing what others might miss.
So I’ll listen when they say that they’re tired, not trying to relate and say, oh yes, I understand I’m tired too, but understanding that they’re tiredness is an all-consuming fatigue. So I step in when I know they won’t ask for help. I be patient and I can break down new learning into smaller steps. So the mental load, I guess, isn’t quite as heavy.
I’ll remind them of their worth when they might not be seeing it. And I’ll talk about life beyond MS because their identity isn’t their MS diagnosis. So sometimes my support is more practical, you know, doing the cooking, vacuuming or tidying when their fatigue takes over. The other times it’s helping them work through new tasks. So as I said, like learning unfamiliar technology or navigating general systems that really aren’t designed excessively or for a spectrum of learning styles.
So these moments seem small, but they’re often the difference between someone’s independence and feeling overwhelmed. And I do like the Cancer Council has a breakdown of carer roles, which helped me put some language to my type of carer role, which was particularly the emotional support category. So that’s where I operate as a sounding board, a steady presence and a quiet advocate, I would say. But it’s also just being family. That’s how I see it.
Jeremy Henderson
Talk to me about some of those challenges. So you mentioned that with MS, so many of the symptoms can be invisible. When you can’t necessarily see the person you’re caring for is struggling. And if they don’t ask for help, how do you, how did you become that sort of, finally tuned to sort of really recognize when that that person really requires that helping hand?
Rebecca Small
I would say it’s tricky. I, I, I’m not too finely tuned to be honest. It’s still really hard, but at the end of the day, I say giving someone space and time and just being open minded to sit there and listen and check in, can create that space for them to tell you more about what you can’t see and how they’re actually feeling because they know that you’re not going to dismiss it. So I think at the end of the day, it does come back to the general attitude and understanding you give to that person. And then if they’re able to share more comfortably in that space, then you’ve given them that time, hopefully that invisible becomes a little more visible.
Jeremy Henderson
I understand through your own work that you’ve also have experience with, with other people who are sort of operating in this care space. What have you, what have you learned and seen?
Rebecca Small
Yeah. So I work as an occupational therapist, as you mentioned before, and I predominantly visit clients in their homes, in the community. I don’t do a lot of clinic work. So I see clients and their families a lot. And I would say that there’s common threads in terms of the carers and the experiences that I see, but no two experiences are the same. So each carer will bring their own perspective shaped by their own relationship, their circumstances and their unique progression of the MS of their loved one. So there are certainly shared challenges burnout, financial strain, navigating support systems.
But the way that these plays out vary a lot. So one thing that I have noticed is that many carers tend to downplay their role. They’ll say, oh, it’s just what I do. Even when they’ve made significant sacrifices, like stepping back from work or having difficult conversations about needing to bring in formal supports through schemes like the NDIS. Then in some cases they don’t have access to those systems, and they haven’t been able to secure that help. So it can then be very emotionally draining and time consuming. So as a result, a lot of the carers are left behind to balance employment, family responsibilities if they are family member, and the demands of their carer role, often without adequate support. So they might not identify with the label of carer, but the impact of what they do.
I see all the time it’s undeniable. And I guess I’ll only briefly touch on this issue here, but having seen the financial burden on family, because often the client with MS has lost their job, in itself, I see this as quite a big issue with a lot of employers kind of assuming about people’s MS and what they can and can’t do or dismissing them prematurely without having those conversations and really asking the person with MS, what can they do in their work?
So only just going off to the side for a moment there, that does feed back into this kind of financial strain issue for carers because if they are family, then they’re the one that’s trying to keep up that job. So I think that’s also a big issue that if our general employers did appreciate more about MS and keep people with MS employed as best as possible and to their capacities, then that would help address that issue a bit. So I guess just bringing it back to carers, regardless of all of these issues I think the main thing that stands out to me is their quiet resilience.
So they’ll adapt, they’ll advocate, they’ll persist. And it’s a reminder that they’re a significant part of the whole care of this person. So they definitely need to be part of these conversations.
Jeremy Henderson
Obviously National Carers Week is an important opportunity to raise awareness about the importance of, of carers and the contribution they make. Beyond that awareness raising piece, what do you think are the gaps in terms of carers, in terms of making sure that carers are adequately supported? What are your biggest concerns, both as a carer and also somebody, I mean, you touched upon some of them just a few minutes ago, but I guess one of the big questions around carers is who cares for the carers? What’s your support system look like? And when you get burnt out and when you need support, who do you turn to?
Rebecca Small
I think that’s a very good question. And it is who’s caring for the carers, right? I guess in my role, I find I can manage it ok. But I will lean on other friends and family as I need to. I think we all have to share the load in different ways. And also just being able to speak about it. So the more that you can have those open communication channels is really important, but that’s not the case for everyone. So as you said, there’s many issues for carers. And I remember actually reading something recently from Carers Australia, what they said about the unpaid care and what that amounts to financially. And it’s huge; they think it’s in the hundreds of billions. So I think that as a general rule, we then really need to be caring for these carers because if you can’t sustain that work and the carers do burn out, it has a huge financial impact on our system. And there’s already escalating costs for the NDIS, but already the informal care that’s provided by family is a huge cost that’s offsetting that. So we need to make sure we’re looking after these carers.
Jeremy Henderson
Rebecca, I think I mentioned in the intro, you’re a valued member of the Lived Experience Expert Panel here at MS Australia. I wonder if you could tell me a little bit about your passion for advocacy. What drives you and motivates you to contribute in that space?
Rebecca Small
I’d say my passion for advocacy is a fire that continues to grow. Uh, the fire did start completely as a result of my family members MS diagnosis.
I, as I learned the nature of MS, I remember hearing the diagnosis for the first time. And that’s really what comes to your mind as well. What’s going to happen? Uh, and my family member likened MS to a roulette wheel. He said, you don’t know if you’ll develop new lesions, where they’ll be on your spinal brain and when that may happen. So constantly living with the unknown is very hard.
But I think sharing this lived experience is something I’m passionate about. And in particular, I would say sharing the insights into invisible disability. So when people see MS due to much publicity and media, I guess most people think, oh, they must be in a wheelchair. But I see firsthand how those invisible disability symptoms are very visible and present for the person who has it.
You know, the brain fog, the leg heaviness, the fatigue, comparing what they used to be able to do. And then at the same time, they often won’t disclose their disability because it isn’t so visible. But by not disclosing it, then they’ll try to push through or put on maybe a facade that can be really tiring and it doesn’t lead to much understanding or accommodations from the general public. So it’s a bit of a cycle with a lot of dismissing or even internalizing blame for their own symptoms. And I see it so clearly through my work actually as well. My clients with MS often start their sentence with, know, now this probably sounds really weird, but I got, you know, this symptom last week and then it went away and now it’s back yesterday, but gone again today. And just giving them the understanding of the absolute spectrum of MS symptoms, both visible and invisible, allows them to go, hey, you know, it is okay. I’ve got these symptoms as part of my MS, but making sure that people do understand that. uh So I think that if I can advocate more to our general public so they can be aware and see the invisibility of disability, not assume about other people, so just show compassion and kindness and that, you know, everyone has their own situation and they shouldn’t feel like they’re forced into disclosing their disability just so the general public adapt. So I think that if the general public are more aware about MS and how it can be an invisible disability, then maybe those with MS are actually more likely to disclose their condition because they’ll know that they’re understood. we’ve been talking a lot about invisibility and invisibility. Do you think carers are visible?
Jeremy Henderson
Do you think carers are seen and appreciated and valued as much as they should be?
Rebecca Small
Generally, no. I would say a lot through my work with family and the clients. Naturally, the client has to be at the centre of any decisions that are made about funding and schemes. But what they often don’t realise is that the carer is such an integral part of that network. So when you’re asking for things like respite or things that are also relating to sustaining the carer. A lot of the time, the funding schemes don’t look at that as well because it’s not directly relating to the client, but in my mind, it is, but that’s how we have to draw those links. So I think that that’s something where they really aren’t recognized. So trying to, in my OT role, make it as clear about how this is a system, this is a client support system, a mixture of formal support workers, but also these informal family carers or whoever the carers are. That that’s all a network. So they need to be appreciating every link of that network. Cause if they don’t, then the network falls over.
Jeremy Henderson
How challenging do think is it for carers to ensure that they provide that support to the loved one, to the friend or family member that they are caring for, and that they can advocate for them on their behalf without taking away their agency and their own and that person’s voice. Is that hard? Do you think is that sometimes a problem?
Rebecca Small
I would say is sometimes it’s a problem, but I think at the end of the day, if it was me making those decisions about funding or anything like that, I would want everyone at the table. So have your therapist there, have your client there, but have their carers there as well. So the client can still feel like they’re being heard, or they can hear everything that is being said about them and all the recommendations such that they can speak up if it’s not something that aligns with them. Although I mean, in my work as an OT, I go to every effort that I can to talk about that with the client before those meetings. But in that case, if the carer does advocate, I think that’s okay. And they understand the client, but it should still be with the client understanding that and being present for those conversations.
Jeremy Henderson
Rebecca, one last question for you then. National Carers Week will draw much-needed attention to the importance and value of carers in the Australian community. What would you hope would be the greatest takeaway after at the end of the conclusion of this week in terms of people’s attitudes, in terms of government action? What do you hope to see?
Rebecca Small
So government action, I guess, for carers and support is not too much of a complex answer, to be honest. I think there’s that well-known phrase in disability advocacy, nothing about us without us. And I think that applies here very strongly. So decisions that affect people with MS or decisions that affect the carers of people with MS should be shaped by those who live the reality. So I think from my OT job, it’s like thinking about me designing a therapy plan or setting goals or prescribing a wheelchair before meeting the patient with MS. So I wouldn’t do this because I don’t understand their needs or their preferences or their circumstances. So I think the same principle really needs to apply with our policies moving forward. Without lived experience at the table, our decisions risk being misaligned, ineffective or counterproductive.
So I understand governments can’t consult every individual, but they can create structures that make this consultation really meaningful. So panels like the MS Australia Lived Experience Expert Panel, the LEEP, are a great example because that offers us a direct line between the government and the voices of people who have that lived experience such that there’s a co-design happening where we’re grounded in the reality of carers experiences rather than government assumptions. So I think investing in this kind of engagement early on is something I’d really like to see happening more. So before funding is allocated or legislated, can we have better outcomes and maybe even cost savings when we’ve designed them from the start based on actual needs and reduce those inefficiencies or like constant revisions that need to happen?
So I guess if I kind of had to sum it up, just basically hearing from carers and people with MS, is really about, not just inclusion, but effectiveness for government policies. So I think we can design systems that’ll work built more on this lived experience and understanding through consultancy. It’s going to help make everything a little bit more effective in the longer term.
Jeremy Henderson
Rebecca. That’s a powerful and positive message to leave this conversation on. We’ll take a short break now. Can I thank our first guest, LEEP member, Rebecca Small. Thank you, Rebecca, for joining us on the Raw Nerve Podcast and sharing your story.
Rebecca Small
Thanks, Jeremy. It’s been a pleasure.
Jeremy Henderson
We’ll be right back after this short break with our next guest. Thank you.
Voiceover
You’re listening to the Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Subscribe to our podcast today at msaustralia.org.au/podcast. And now back to the show.
Jeremy Henderson
Hello and welcome back to the Raw Nerve. Today we’ve been talking about and spotlighting MS carers, those in our community caring for people living with MS and the issues they face as we mark national carers week. I’d now like to welcome our next guest into the studio to speak about her experience as an MS carer, as an MS Australia lived experience expert panel member. And her experience engaging with other carers through her work with people with disability. Chloe Colles from Tasmania. Welcome Chloe.
Chloe Colles
Hi, thank you. It’s nice to be here.
Jeremy Henderson
Great to have you on the Raw nerve. Chloe, I wonder if you’d be happy to share a little bit about your experience as a carer for a family member with MS.
Chloe Colles
Of course. So my mom was diagnosed with MS about 11 years ago in her late forties. At that time I was still living at home and like many families, we didn’t know what the diagnosis would mean for her or for us. Not long after that, I started working in the disability sector, which has grown into a really passionate career for me. And it’s shaped how I’ve been able to support her over the years. So I’ve navigated her through the NDIS, been a part of her review meetings, giving my dad advice so he can follow up on things and being there emotionally for her and the rest of the family. I now live in Tasmania, and my mum is in South Australia. So most of her day-to-day support comes from my dad, my auntie and her service providers. So my role now feels more of an informal kind of caring. So checking in, advocating when needed and making sure she feels supported.
So one of the hardest things is balancing the different hats I wear. So professionally I’m a disability support service manager, so I bring a lot of knowledge, but at the end of the day, I’m also just her daughter. She calls me to check in, catch up and connect, not for a professional opinion as such. So that line between carer and family member is a tricky one. And yeah, there’s definitely no rule book for when to know to step up or to step back.
Thinking of my dad and auntie in particular, as their roles are more hands-on, their support for my mum never ends. It can be tiring and emotional, but it’s also deeply rewarding. There’s many things that can happen that you just can’t control and are unpredictable. But just like in my professional role in life, it’s about showing up, supporting and caring for the person in front of you.
Jeremy Henderson
Chloe. You mentioned a couple of sorts of issues ah that carers face. You talked about, for you particularly both with your personal connection to caring, but also your professional that you’re wearing different hats. But you also talked about the pressures on carers. What do you consider to be the important issues that are facing carers of people with MS?
Chloe Colles
Yes, I think one of the biggest issues carers face is recognition. So often the role of carers, especially for people with MS is invisible. Does the wider community truly understand what it’s like to live with MS or to support someone living with it? Do they see the countless of hours unpaid, the behind-the-scenes effort and work that goes into providing emotional, physical and practical support? In many cases, I would say the answer is no. Carers are often the quiet backbone, and the lack of recognition can sometimes feel isolating and undervalued. Another big issue is the emotional toll.
MS is a fluctuating and unpredictable conditions. As you know, you can have good days, really tough days. And as a carer, you ride that wave alongside the person you love. So personally, I’ve experienced grief at losing parts of my mum that I’ll never get back. Her capacity has changed a lot over the years, and it can be heartbreaking to witness that. But equally, I know she feels the same grief in losing some of her independence.
So it’s not just about the practical challenges but also processing the ongoing loss while still being present and supportive. Access to right supports is another huge area of concern. Things like timely respite care, affordable and effective medications, mental health support for both the person with MS and their carers, and clear accessible information about navigating systems like the NDIS or health services. So too often carers find themselves trying to piece together a very complicated puzzle with very little guidance and that can be exhausting. There’s also the issue of connection. Many carers feel incredibly isolated because so much of what they do happens behind closed doors.
There also can be stigma, not only around disability generally, but specifically around MS and what it means to live with a condition that is so unpredictable. Creating spaces where carers can come together, share experiences, and learn from one another is vital.
Not only does it help carers feel a less alone, but it strengthens the whole support system around the person with MS. So recognition, emotional wellbeing, systematic access and social connection.
But most importantly, it’s about ensuring carers feel seen, heard and valued for the crucial role they play.
Jeremy Henderson
Chloe, in the introduction, I mentioned that you have experience engaging with other carers through your work with people with disability. I wonder if you could share your experience engaging with carers professionally and what have you learned through that experience?
Chloe Colles
Yeah, in my professional role, I work with families and carers every single day. And I feel really privileged to walk alongside them in that space. I get to hear their stories, so their challenges, their achievements, and most importantly, the love and commitment they have for the people they support. What strikes me time and time again, while every journey um is that, while every journey with MS is unique, there are threads of common ground that connect carers across different circumstances. So many carers tell me what they need most is to be heard, supported, and most importantly, included in the process.
They don’t want to be on the sidelines as such. They want to be partners in decision-making. They want clear, timely information to be consulted with and to be updated when it’s appropriate. That inclusion not only helps them feel valued but also improves outcomes for the people they care for. Because carers often know the person best and can bring insights that no other service provider ever could.
Another theme that I see is the need for reassurance that they’re not alone. Carers can sometimes feel like they’re carrying the weight of the world, but when they connect with others who are going through something similar, there’s this immediate sense of recognition and relief. I’ve seen carers share practical tips, emotional support, and even just a knowing nod that says, get it. Those connections are powerful, and they can transform isolation into community.
For me personally, engaging with carers in this way keeps me grounded. It reminds me that behind every service plan, every policy and every care arrangement, there’s a real family trying to navigate something incredibly complex. And it reinforces that the idea that no carer should feel like they’re carrying this alone. In reality, they are part of a much larger network of people who understand, who care and who want to make a difference.
Jeremy Henderson
Chloe, earlier you talked about this idea that carers in Australia are underappreciated and undervalued. And I think that is absolutely the case. And so I wanted to talk to you about National Carers Week and the theme. The theme of National Carers Week this year is you are one, you know one, or you will be one. And I think that theme is really trying to drive home this idea that, you know, everyone’s lives is going to be touched in some way by a carer – that carers just plays such a critical role in the community, in our society. What do you think about the theme? What do you think about national carers week and this opportunity to put a spotlight on the huge importance and value of carers?
Chloe Colles
Yeah. So I think this year’s theme is fantastic. And it really highlights the fact that there’s millions of Australians currently that are in a position that can sometimes be unrecognized and that there’s a lack of recognition for that being a carer to a family member, a friend, a neighbour, someone in the community. So I know for my family members, there’s a lot of stigma around what that looks like and my family members and the support that they provide to my mum. More of what they see as just being a family member to my mum, but are not really, how do I put this? I don’t think that there’s enough understanding in the community about the hours that are put in with physical support and the complexities and navigating service providers and the NDIS and coordinating supports that goes in from unpaid carers. So yeah, I think the theme really highlights that this affects a lot of families and community members out there. And it touches everyone at some point in their life.
Jeremy Henderson
Chloe, in terms of your involvement, both personally as a carer and professionally, um, who do you turn to for support? When you’re giving so much of yourself to others. Yes, I think self- care is extremely important for people in highly stressful roles, if that’s in their career or in their personal life as well. So I know for me personally, trying to have boundaries when it comes to my professional roles and have time off to take care of myself and exercise, eat well. I love cooking. So nutrition and getting well-balanced diet, connecting with friends and family and having meaningful vulnerable conversations about what I’m going through. Yeah, I find those things really help for me in my professional life and also in my personal life to, and especially to, like I said, debrief and be vulnerable about where I’m at and what I’m thinking and feeling at times as well.
Jeremy Henderson
You mentioned earlier this idea of carers often being invisible and not seen. Do you think that’s a large part of why sometimes society just doesn’t value carers enough that this, this critical work is, being done so generously, but so often, not sort of seen by the community?
Chloe Colles
I think so. Like I mentioned before, people were saying that it’s just part of being a family member, but there’s so much.
There are so many more layers than that with navigating systems and coordinating services. When you’ve got a disability, there’s endless medical appointments, assessments that need to happen and reviews, um getting service providers, and then you have the added complexities of getting personality matches when services are being provided. And, you know, for my mum being in a remote region as well, being able to connect with service providers and then have services when things go wrong and increased services. So yeah, there’s a lot of work that goes on behind the scenes that people don’t understand if they haven’t been in that carer role themselves. And it looks different from every person and every family.
Jeremy Henderson
I can tell, just in your voice that you’re incredibly passionate about the role of a carer.
and the importance of carers in the community. I know you’re also very passionate about advocacy more generally as well. You’re a highly valued member of MS Australia’s Lived Experience Expert Panel. I’m really curious to know what drives your passion for advocacy.
Chloe Colles
Yeah, so I think advocacy is really important and I think there’s a ripple effect that everyone can contribute to in the community and that can be done in lots of different ways.
Advocacy for me is really important. Having my family in South Australia and now having my new family and husband in Tasmania. It’s a way where I can speak up and use my voice and be a part of certain communities. And the lived experience expert panel for MS Australia is a great example. I can be involved in something that’s going to shape the future for my, for my mum and for people living with MS, while being in a different state from my mum. So that physical support that I can’t provide, I can still shape, you know, policy changes and operational changes and service delivery in the future, being so far away from my family and being disconnected with the physical support.
Jeremy Henderson
Chloe. I wonder if I can ask you a question. What have you learned? So you’re a carer, but you’ve also professionally, you’re also witnessing and working alongside other carers. What have you learned from seeing other people as carers and seeing them in action? Have you learned anything yourself?
Chloe Colles
Yeah, I think the biggest thing you learn over the years, I’m very mindful that everyone’s circumstances are very different and to never assume someone’s capacity or what their circumstances look like and what they can or can’t do or should be doing or what their goals look like or their aspirations. So a big thing for me that I’ve learned over the years is to be non-judgmental, don’t ever jump to conclusions and hear people out actively listen where they’re at and what support they need and what their goals are, and wishes are and work with their carers and stakeholders and informal supports to come together and be really person-centered with the approach.
Jeremy Henderson
Thank you, Chloe, National Carers Week is an annual event. What would you hope would be the takeaway? What would you hope that the general public would be left with at the end of National Carers Week?
Chloe Colles
So I hope from each year that passes that there’s more recognition for carers in the community and what that looks like. I’ve spoken a little bit today about a lack of recognition about the things that happen behind closed doors for carers um and the stigma that’s around that. I do believe that there’s a lot of stuff going on where people aren’t speaking up about it and it’s not recognised. And I think that we can change from a legislation perspective as well how we can support carers through paid subsidies or sorry, tax subsidies and physical payments and flexible working arrangements to accommodate more for carers, ensuring that they have what they need to continue providing that support whilst working and actively contributing to the community so then they can keep being in that caring role rather than service providers coming in.
Jeremy Henderson
Chloe, thank you so much for your time today. Just to give you the last word and let you close out the podcast today. I wonder if I can just ask you, how are you going to be marking National Carers Week this week?
Chloe Colles
Yeah. So I’m looking to host some celebrations within the workplace to spread awareness of the work, the fantastic work that carers do across Australia and in our community. And I think for me on a more personal level, just checking in with my family members, my dad and auntie in particular, they provide a huge amount of support to my mom every day in their caring roles and just checking in with them and making sure that they’re well supported and if there’s any way I can help.
Jeremy Henderson
Chloe, that’s excellent. Thank you so much for joining us on the podcast and for being so generous with your time and for sharing your knowledge and lived experience as a carer with us on the Raw Nerve today.
Voiceover
Thanks for listening to the Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today at msaustralia.org.au/podcast.
