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
Hi, Brooke. Thank you for joining us today on the Raw Nerve.
Brooke Campbell Bayes
Thank you for having me.
We’ve been looking forward to chatting with you today. So at MS Australia, we spend a lot of time working with journalists and media outlets around the country to ensure that Australians living with MS can have a voice and to ensure their stories are told. And here on the Raw Nerve, we’ve got this privilege of speaking directly with inspiring individuals living with MS. So today I’m really excited because today on the Raw Nerve, we get to do both.
Jeremy Henderson
There are so many places we could start the conversation, but perhaps we can kick things off with your recent Sydney Morning Herald series that spotlighted chronic disease and disability. You came to our attention last year with an article you wrote, a wonderful article you wrote for the series. You interviewed legendary Australian comedian Tim Ferguson. I wonder if you can tell me firstly, what was the genesis for that series of articles?
Brooke Campbell Bayes
Look, I just thought it was really important to shine a light on people living with chronic illness and disabilities and give people a real glimpse into what it’s like to live with these illnesses and disabilities. Because a lot of chronic illnesses are invisible and you might look at someone and they might look fine and look well and not look sick, but behind the scenes is a very different story. And I wanted to really showcase those people living like that, just so people can see what it’s like to live with a chronic illness or disability, but also for families and friends of people who have chronic illnesses or disabilities to know what it is like, what it’s really like. So I really wanted to chat to people who were really open to talking about the nitty gritty. I wanted…I really wanted to make sure that we were kind of doing the warts and all stories and people were being really open and honest. And I have just been blown away by the rawness and the honesty of all the beautiful people that I’ve spoken to. So yeah, I really think it’s a really important topic and I hope that it opens the eyes and raises awareness for people that are going through these difficult times.
Jeremy Henderson
What kind of public reaction did you get to this series? Have you had much feedback?
Brooke Campbell Bayes
Yeah, it’s been great. I’ve had such amazing feedback, which makes it all the more worthwhile. You know, I’ve had people contact me who have had, you know, their families or friends, you know, have had it, have a disability or a chronic illness and they’ve said, my God, I get, you know, I get it now. I understand more. So thank you. You know, and if that’s all the series does, then I am thrilled. You know, I think raising the awareness and giving people an understanding of what it’s like is really important. So I’m really happy to be able to do that.
Jeremy Henderson
What did you learn, anything, personally? What was your takeaway from doing those interviews?
Brooke Campbell Bayes
Interesting question. So I guess the main takeaway for me from all of these interviews is the optimism that these people have. You you’re talking to people that are going through some really hard, tough times, yet every single person that I have spoken to thus far has just been incredibly optimistic and able to see the silver lining in a pretty crappy situation, which I just think is amazing. It’s so uplifting and so inspiring to listen to their stories and just them talk about what they’ve taken away from this experience and all the good things that have come from it, because it would be very easy to dwell on all the bad stuff. But I’ve just found that these people just don’t, which is just incredible.
Jeremy Henderson
I like to think that most journalists have a natural curiosity about the world around them and interest in engaging with people and hopefully a degree of empathy that allows them to connect with others. I’m just curious to know whether your approach to interviewing people with disability has changed at all since your own MS diagnosis.
Brooke Campbell Bayes
100%, yes, definitely. Gosh, I’ve learned so much since my own diagnosis, but yeah, look, think having, kind of going into these interviews with these people and having a chronic illness myself, it just gives you that level of connection straight away. And you know the questions to ask because often, you know, while every illness and disability are different, there are common themes throughout, you know, there’s, you know, the chronic fatigue, there’s the feeling of need to, you needing to wear a mask, there’s the guilt and the, you know, feeling like a burden and there’s so many universal topics. So from the get go, I think, you know, you have that connection straight away and you know the questions to ask because often they’re things that you’re dealing with as well.
Jeremy Henderson
I imagine that connection was even more so when you were interviewing Tim Ferguson, who lives with MS. What was that experience like?
Brooke Campbell Bayes
I just love him. He’s just such an amazing guy. Such a special human being. I loved it. I interviewed him at a cafe near his home in Sydney and he came in on his wheelchair and he’s a very funny man, obviously. One of the first things he said to me was, I bet you’re looking at me in my wheelchair and thinking, God, this is my future. But look, I know every case of MS is so different. But look, I just loved meeting with him. Kind of, you know, both having MS, just being able to connect with someone that understands you and what you’re going through is pretty amazing. Yeah, he was honestly just incredible. I think, you, you share this secret language, I guess you could say, when you connect with someone else that has MS, even though you could have the most amazing and supportive family and friends around you. Talking to somebody that goes through what you do and understands it in the way that you do is pretty special.
Jeremy Henderson
Do you think the media pays enough attention to serious health reporting? Do you think there’s an appetite among the public for more serious reporting beyond fad diets or celebrity weight loss stories?
Brooke Campbell Bayes
I think no is the simple answer, no.
I say this because when I was first diagnosed, one of the things that I really craved and wanted was to read the stories of people like me, people who, know, just everyday people like myself and how they tackled it, how they navigate their life, how they juggle children and work and any tips and tricks they might have to make it easier.
And I really just couldn’t find anything. And I think I’ve mentioned this to you before, Jeremy, but one of the places I went was to this podcast and listened to so many episodes because you just want to be able to relate to someone and hear how it’s affected them in the hope that perhaps that can help you as well. And just gives you also a glimpse into what the future may be. So definitely no, I don’t think so.
And I have spoken to different media outlets over the last 12 months or so about ideas I’ve had around raising awareness for chronic illness and disability. And I haven’t had an amazing response, to be honest. And I think a lot of people seem to have this idea, this preconceived notion that it’s very niche, know, it’s a very niche market of people who have, you who live like this, who have a chronic illness or disability.
But in fact, it’s almost half the population. The latest stats show that I think it was like 47 % of Australians live with either a chronic illness or disability. And that is huge, know, that’s massive. So it’s definitely not niche. It applies and affects so many people here in our country. And I definitely think it’s something that we need to be talking more about.
Jeremy Henderson
I think your the series in the Sydney Morning Herald was notable because we don’t see enough of that kind of reporting and also notable because of the quality of the writing and the insights in the articles. in terms of sort of feeling hopeful, are you seeing are we seeing slightly more interest? Are we seeing any? Is it getting better do you think?
Brooke Campbell Bayes
I think so. think it is. I think it’s a slow burn, but I do think it is happening. There’s a series on, there’s a documentary on SBS with Osher Gunsberg talking about his experience with chronic health. And I know a lot of people watch that and have been talking about that. And even with, yeah, I think with this series, hopefully that’s helping other people see that there is a need and a market for this.
So I think it’s slowly getting there. There’s definitely a focus in the media at the moment on longevity, which definitely plays into people with chronic illnesses, but it can also apply to everyone. So the longevity thing is definitely something I’m seeing a lot more of. So hopefully chronic illness is also something we’ll start to see a little bit more.
Jeremy Henderson
I wonder if you’d be happy to share a little bit about your own MS diagnosis and the journey that you’ve been on.
Brooke Campbell Bayes
Yes, of course. So I was diagnosed about almost three years ago now. There were no signs or symptoms really in the lead up at all. I actually I went out to, don’t laugh at me, but I went out on a Saturday night with some of my girlfriends to an R &B Friday’s night. There was a concert in the city here in Sydney, Janet Jackson and all kinds of you know, fun people play. So we went to this concert, had a great time. And then the next day I, you know, went to bed, you know, completely healthy, woke up the next day and was numb down my right side, most of my right side. And at first I thought, perhaps I’ve like, I’ve hit a nerve or something. I’d had a couple of wines. I thought, maybe I’ve like, you know, I’ve knocked my leg or something on the way out of the concert.
So I just thought, I’ll just see how this goes. Of course I Googled it as we all do. And the first things that kind of came up were you either have MS or you’re having a stroke. And I was like, no, that doesn’t apply to me. That’s not what’s happening here. And then as the day went on, the numbness on my right side started to get a lot worse and was kind of all the way from the, you know, my…my toes to my shoulder at that point. So I did a telehealth with my doctor who said go straight to emergency, which I did. And I went to emergency at about eight o’clock in the morning and then by about eight p.m. that night, they had said you have MS. So it was all happened really quite quickly.
I hear a lot of stories about people who have MS that have fought for years and years for a diagnosis. Yeah, that didn’t happen. It was very quick. Huge shock.
Jeremy Henderson
How did you, I was going to say, how did you process that in the space of such a short period of time?
Brooke Campbell Bayes
Look, the shock was pretty overwhelming to start with. I didn’t know much about MS really at all. We did the MS Readathon as kids, my sisters and I, as did a lot of people in Victoria. And all I really knew was, and it’s funny actually, because the time that I was in hospital, there was an interview playing with Christina Applegate who was diagnosed with MS a couple of years before me. And she was walking with a cane and not in a great place. And so I was really nervous that I wouldn’t be able to walk again because at that stage I wasn’t really able to walk. And so I kind of, you go to the worst place, what if this happens or that happens? And so for the first, you know, 24 hours, I was kind of going through those motions of what’s going to happen and what does this look like, what is my life going to look like? But I was quickly reassured by the neurologists at the hospital that, you know, it will be okay. It’s not like it used to be. There are really effective treatments. And so I felt much more positive after that. I’m very much a get on with it. What do I do? Tell me what I have to do. I’ll do it. Let’s do it, let’s have a plan and I’ll do exactly what you tell me and I’ll be okay. So I think I just adopted that attitude pretty early on. I remember one neurologist at the hospital who said to me, I’d probably been there for about a week and I still wasn’t, I was having a lot of trouble walking. And I remember saying to him, like, what’s going to happen? Like what happens if I leave and I still can’t walk properly? And he said, you’ll just get used to it, this is your life now and you’ll just get used to it. And I just thinking, my God, that’s a bit harsh. Like I don’t think I will get used to it, but I did. And that’s just, I guess the case with a lot of MS symptoms. At first it feels like, holy moly, how am I going to live with, you know, no feeling in my hands or this happening or that happening, but you just do, you get used to it and doesn’t mean it’s easy or it’s fun. But you get used to it and manage it the best you can.
Jeremy Henderson
What does living with MS look like today for you?
Brooke Campbell Bayes
In terms of daily symptoms, yeah, okay. Gosh, I guess I have a lot of nerve pain. So in particular on my right side, so my right leg and my right hip, I have a lot of pain there. Sometimes it’s, know, some days it’s easier and better than others. Some days I find it really hard to walk. Other days, it’s fine. So it can often be day by day. I don’t have much feeling or sensation in my hands. They’re still quite buzzy. And again, at first I was like, it’s driving me crazy. But now I don’t really even think about it. But it affects me in terms of things like cooking and you know, I love cooking and things like that, but that can be tricky. Those kind of small movements can be hard. I rely on my two young daughters sometimes to kind of open containers and cans and things like that. What else? I have occipital neuralgia and trigeminal neuralgia. I won’t go into it in too much detail, but I have a face block for the trigeminal neuralgia.
And that is one of the worst pain, probably the worst pain I think I’ve ever experienced. It is really excruciating. At the moment that’s under control. I have occipital neurology as well, which kind of means like when I turn my head either way, I have like shooting pain that goes up either side of my head. Nausea is a big one for me.
I have a lot of issues with my digestion, which is also common for a lot of people with MS because of the brain slowing down the messages to your gut. So that has caused a lot of issues with my digestion. So I take medication for it, but when it flares up, it can be quite challenging. You never quite know, will it last for two days or two weeks? So that can be hard.
Day to day, what else? like I have a lot of like itching sensation on my face, more so when I lay down, which is a weird feeling. Often get like a burning sensation on my legs too. Yeah, I think that’s probably the main things. It’s a list, yeah, it’s a list.
Jeremy Henderson
You spoke earlier, you talked about people with chronic conditions, so many of those being sort of invisible impacts and symptoms and so people not recognizing that people are struggling and dealing in some cases with a lot at any one time. How have you navigated that in terms of family life, in terms of employment? What kind of impact has it had and what accommodations have others made for you to help you succeed and achieve?
Brooke Campbell Bayes
I don’t really know to be honest if I have navigated that as well as I would like to. It’s a really tricky thing you know I know a lot of people with chronic illnesses get quite upset when people say but you look great or you don’t look sick which I understand I don’t know if I necessarily feel like that but I definitely understand that you know because it can feel like what you’re going through is being diminished in some way and that’s that’s hard.
But you know, I do, I get that a lot, you know, whether it’s the supermarket or school pick up or, you know, work or wherever it might be, that people do often tend to say, oh, you know, but you look great. And on one hand, I think, well, that’s good, right? Like, I don’t want to look, you know, terrible. So that’s, you know, that’s good. I’m glad I don’t look sick. But also then it can be tricky. It can be hard because, you know, then people have these expectations of you, which are often just not, you you’re not able to live up to. So that can be, that could be tricky. I think a big thing is just being more honest to people about what you’re going through and what, you know, what your day’s like. But that’s something I’m still working on.
Jeremy Henderson
I’m not sure how old your children are but is that something you can talk to your kids about about your MS that mum has MS. Can they understand that?
Brooke Campbell Bayes
Yeah, yeah, yeah. So I have a almost 10 year old and a six year old. The six year old doesn’t really know any different. But my 10 year old was really, that was really hard, really hard time actually, because I thought for quite a while that I wouldn’t tell the girls, tell Edie, that’s my eldest, tell her about what was going on, but it got to a point where I had, sometimes when you’re in hospital, a social worker will come past and say, know, do you want to talk about anything? Do you have any questions? Can I help? And I spoke to her this one particular time and she had said, I really think you should tell your oldest because when you don’t, they think the worst. Their mind goes to the absolute worst place. And at this point, I’d probably in the space of six months had spent, you know, I’d probably been in hospital four or five times and each time for, you know, at least kind of four or five days. So it was a lot. And, you know, I didn’t know what to tell her. So we kind of kept saying things that, you know, just trying to make it easier for her. Well, I thought I was, but the advice that I was given really change things because I did decide to tell her and I’m so glad that I did because now we can talk about it openly and honestly and we have this little system where she’ll say to me, you know, if she can say I’m not well, she might say, how are you out of 10 today, mum? So that kind of works so well because, you know, I can say, look, I might be a seven today, but look at me, you know, we’re still swimming, you know, in the pool and we’re still, you know, doing all these things and a mum’s still playing with you. So it’s good, I think, for her to see even on the days when I’m not like amazing. I’m still mum, I can still do all of the things and I’m still going to be that person for her, that support for her. So that that’s kind of that system is working well for us.
And you know, like I do, I try not to rely on her, but she’s really helpful. You know, she’ll, you know, she’ll see me struggling with something and she’ll, you know, she’ll help or, you know, her little sister will say, mom, can you get with this from upstairs? And she’ll say, go and get it. Mom doesn’t need to keep going up and down the stairs all day. So she’s really gorgeous and caring in that way. And some, yeah, sometimes I think, is it too much for her? But then on the other hand, I think, well, I think I’m raising a really empathetic, caring little person and that can only be a good thing.
Jeremy Henderson
Outside of your children, what does your support network look like? And how important is that to you to have people around you that share a sort of a positive mindset and understand what it is you’re dealing with and they’re there to support you.
Brooke Campbell Bayes
Yeah, look, I’m really lucky. We don’t unfortunately have any family in Sydney. We’re from Melbourne originally, so our family are all in Geelong in Melbourne. But we have the most amazing support network of friends here who are just, they’re incredible. Like they will drop everything to help out. If I’ve got to go to hospital at the last minute, they will jump on the phone and say, I’ll take the girls to school or I’ll pick them up and they’ll leave food at the doorstep for my husband and the girls and they’ll drive me around and they’re really incredible. So yeah, unfortunately we don’t have family but they are like our family and we’re really, really lucky to have them.
Likewise, my husband, James, is incredible. He’s just been the most incredible support. He is one of those people that’s just eternally optimistic. So he always sees the good side in every situation. Nothing’s ever too hard or stressful for him. You know, I could call him at work and say, sorry, babe, I just got this call from Natasha, my neurologist. I’ve got to go to hospital tomorrow for four days. And he’ll be like, no problem. I’ll work from home. It’ll be fine. We’ve got this. So he’s really incredible and I feel really fortunate to have him in my corner.
Jeremy Henderson
Brooke, I wonder if we can jump back to your career now. I’m really curious to know why journalism and how did you get your start?
Brooke Campbell Bayes
Oh, okay. I have, I’m one of those people, like I’ve just always wanted to be a writer, to be a journalist ever since I was a kid. I grew up in Geelong in Victoria. You know, I did stints at the Geelong advertiser. As a teenager, I was writing book reviews for the Geelong News for free. I was like, whatever you want me to do, you know, I can do it. So doing movie reviews, book reviews. just loved it. Studied journalism in Geelong and then I was about, I’d just finished Uni and I was about 20, 19 or 20 and I had got a job offer at a magazine in Sydney and that was just, you know, that meant everything so I packed up and left and moved to Sydney and never looked back.
Yeah, I love it. I love what I do. I’ve been fortunate to work with a lot of great people, a lot of great publishers and TV shows and radio shows. And yeah, I feel really lucky and proud of everything I’ve been able to do.
Jeremy Henderson
is their one facet of the work that you’ve most enjoy?
Brooke Campbell Bayes
One facet, probably storytelling. I love telling people’s stories. I feel like it’s a privilege to be able to share someone else’s story. And I always try and do it with great understanding and empathy. There’s that side. Then also, I guess, I’ve worked a lot in situations like in newsrooms or as a producer on TV shows or radio shows where things are live.
And that fast-paced environment is so exciting. You get a real adrenaline from doing those kinds of things. So I, well, I do anyway. So I’d say that’s probably the other thing. I really enjoy that and working down to the wire to, whether it’s to get the news out or it’s to get a TV show or radio show on, it’s a really exciting thing to be able to do.
Jeremy Henderson
What advice do you have for people out there that might be interested in pursuing a career in journalism or working in the media?
Brooke Campbell Bayes
My advice would be get your hands dirty, get in there, volunteer, there’s nothing like, you can go to Uni and you can, you know, do all the, you know, the theory, but practical work means everything. So volunteer, volunteer, volunteer. That’s my big one. I did that all through Uni. Every Uni holidays, I would go up to Sydney or, you know, to country towns like Ballarat and Warrnambool and I would work for free for newspapers and magazines in my holidays and it paid off. that’s, you know, I think if you can go to an employer and say, I’ve done all of these things, it shows that you’re really determined and you really want to do it and you’ll go over and above. So that would be my advice.
Jeremy Henderson
Excellent. Brooke, I’d love to talk to you about your involvement in the Show and Tell podcast, particularly the Fully Sick episodes. So I wonder if you can tell me a little bit about that.
Brooke Campbell Bayes (26:49.622)
Yes.
Yeah, sure. So one of my best friends is Monty Diamond. She is a TV radio host and she invited me on to the Show and Tell podcast to talk about my experience with MS. Monty herself has chronic migraine, which is something as a side note, something else I’m hoping to highlight in the Sydney Morning Herald and the Age articles, because I do think people don’t know enough about that and how debilitating that is. So she suffers with chronic migraine and the two of us, doesn’t live, she lives in Byron Bay, but we talk on the phone all the time about all the things that we have going on with our health. And as I mentioned before, often in these situations, while you don’t have the same illness, there are so many common factors that you’ve experienced. So we talk all the time and I find it so helpful you know, to have her to talk to and I often get off the phone and I feel so much better. And so she’d asked me on before, I’d been asked to do a few things also before that and just hadn’t felt comfortable like I really wanted to talk about it. But then when she asked me again, I thought, yes, I have to do this because I get so much out of the conversations the two of us have and maybe someone else listening will find that as well. So I went on and we did that episode and the response was just so amazing and overwhelming. I just got so many messages on Instagram just from people saying, a lot of people who have different illnesses saying, my God, I love that. It was so honest. Can you talk about this next and this and this? And when you said that, I was like, my God, me too. And other people who said, I forwarded this to my sister or my mom because they don’t get it. And it’s just so many messages and it just felt so good, as corny as it sounds, it just felt so good to know, my God, this is actually, this made a difference, you know, we’re helping people. And so then we decided, let’s keep doing this. So now we’re doing a podcast together called Fully Sick, which I’m just loving, I really am loving doing with Monty and we talk about all the things that affect people going through chronic illness and disabilities. And in a really real and honest way that I hope people can relate and connect to.
Jeremy Henderson
I was going to ask you about that. I’m just wondering if you enjoy the freedom of the podcast as a medium, but also the freedom of your particular podcast. They are raw and they’re honest and they’re fun. But how much fun is it and how freeing is it to sort of have control of your own sort of a platform and, and content and to discuss things so frankly and, and, as candidly as you’re doing.
Brooke Campbell Bayes
Yeah, good question. Hugely, hugely freeing. It’s been something that we’ve been doing for probably three months or so. it’s been such a great three months doing it. As I said, the feedback’s been incredible. But it’s great to be able to have a platform to do it where you’re not being controlled by anyone in terms of what you can and can’t say. Because I think the best and most relatable podcasts are those ones that aren’t just kind of giving you the glossy version of what’s going on, but the really real day-to-day version. I’ve even had my own family and friends and husband say to me after listening to some of the episodes, I didn’t know that, or why don’t you ever tell us that? Or I didn’t know you had to go through that because I’m not always the best at you know, asking for help or telling people when, you know, things are going on that aren’t so positive. But I feel really open and honest doing it in this podcast. It’s kind of, I don’t know why I feel like it’s, I can do it there, but I guess it’s because I feel like the people I’m talking to understand. it, Yeah, it’s given me a, it’s a lot of fun and it’s given me a lot of enjoyment. And I hope that other people are listening and connecting.
Jeremy Henderson
I can clearly see the way you talk about it is clearly something that you’re incredibly proud of. And it’s a real joy for you to do. I wonder what’s ahead. What’s ahead for Brook in 2025? What are your plans for the year?
Brooke Campbell Bayes
Gosh, okay, so I would love to keep continuing the series I’m doing, The Sydney Morning Herald and The Age and shining a spotlight on chronic illness. I want to continue the Fully Sick podcast as well. I have some plans, fingers crossed, to write a book on chronic illness and disability in very much the same tone as the podcast, which is honest and fun and still informative and all those kinds of things, but in a really relatable way that people can take away tips and things like that that have helped other people in their situation. working on that in my downtime. Yeah, yeah, we’ve just booked a holiday to Bali in a few months. So I’m looking forward to that. Something about the ocean and the water definitely brings me lot of joy. So I’m making a real effort this year to try and get and do a quick ocean swim every day if I can. And yeah, that’s kind of, if I can tick that box, then I’ll be happy.
Jeremy Henderson
Excellent. Lastly, Brooke, I wonder if you’ve got any advice for people embarking on their own MS diagnosis journeys, things maybe that you’ve learned along the way or advice that you think might be helpful.
Brooke Campbell Bayes (32:45.418)
Yeah, sure. I think one of the biggest things is connection, like finding somebody who you can connect with that has MS. So that for me has been so crucial and so helpful. And I know you might not know someone that has it, but you can reach out to organisations like MS Australia and they can put you in touch with somebody. There are groups you can join on Facebook.
If someone reaches out and says, my aunt’s sister’s cousin has it, which you get quite a bit, take them up on it. Because to have one or two people that you can talk to, I think is really crucial. I have a couple of amazing women that I can call on who have MS. And I could get a new symptom. And I’ll pick up the phone and say, hey, this is happening. What do you think?
And it’s so reassuring to know that you can pick up the phone and have those conversations. So I would really suggest from the get-go, finding a couple of people that you can connect with. And then I guess I’d say, don’t be too hard on yourself. Learn to just, it can be hard to rest, you know I’m definitely someone that finds that hard, but I have learned to do it because if I don’t, my body will tell me when it’s too late. So, that’s a big one, just listening to your body and resting when you need to and not feeling any guilt or shame around that. know, there’s such a, I don’t know, society seems to place such a, you know, an emphasis on being busy and how it’s great to be busy, but that’s not always the case. Sometimes slowing down is just as good. So I’d say when you can, slow down and rest when you need to.
Jeremy Henderson
That sounds like the perfect opportunity to draw this episode to a close. I’ll let you go and have a cup of tea and a couple of minutes rest and relaxation. Thank you so, much for your time today. It’s been a real pleasure talking to you. Thank you.
Brooke Campbell Bayes
Hahaha
Thanks, Jeremy. really appreciate you having me on. Thank you. Take care.
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.
