“…the mental, challenges are as great as perhaps the physical ones “
Peta Hooke interviews Fran, an ambassador for MS Australia. Fran chats about confronting her late diagnosis of multiple sclerosis (MS) and some of the individualised challenges that people with MS face including heat sensitivity, fatigue, visual and mobility issues.
MS is the most common acquired chronic neurological disease and in Australia, affects three times more women than men. In MS, the body’s own immune system mistakenly attacks and damages the fatty material – called myelin – around the nerves. This results in a range of symptoms, but no two people experience MS in the same way.
For more information about MS, please visit the invisible disabilities index here.
For support please click here to visit MS Australia or MSPlus.
The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them. It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.
A big thank you to Peta Hooke for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Peta's I can't stand podcast here and Sandee Facy's music here.
If you want to share your experience, get in touch with us by emailing us here.
Transcript:
Peta [00:00:00] I would like to acknowledge the traditional custodians of land and waters of which this podcast is recorded, especially to those with a disability themselves. Hello and welcome to Sunflower Conversations, a podcast where we explore the experiences of people with hidden disabilities and what the sunflower means to them. My name is Peta Hooke. I'm your host. I have cerebral palsy as well as other non visible disabilities. Every episode we're going to be chatting with a different sunflower wearer to understand what it's like for them to identify as somebody with a hidden disability and how people can best support them in different circumstances. Let's add a little bit of sunflower sunshine to your day and get started.
Fran [00:01:04] Hi, I'm Fran and I'm an ambassador for MS Australia. I'm 60 years old and I started out life as an engineer, and then I raised a family. And, then I was a maths teacher at about seven years ago. I was diagnosed with multiple sclerosis, or as most people commonly know it, Ms.. And there are a lot of us around because there are about 33,000 people in Australia who have multiple sclerosis. And, I'm now retired, because of the multiple sclerosis. And, it it does pose some challenges.
Peta [00:01:50] Having a disability is challenging, like, there's no doubt about that. But I can really see that you're comfortable with your disability. How how has the process been in accepting your disability, Frances?
Fran [00:02:04] Not easy in the early stages. I think for everybody, when faced with something like that, there's a lot of grief and sadness, and a lot of adaptation that has to happen. And the, the mental, challenges are as great as perhaps the physical ones. So, so it's not an easy journey for anybody, but, very lucky. I still think that the glass is half full rather than half empty.
Peta [00:02:37] What do you think people most misunderstand about your disability?
Fran [00:02:42] Well, MS is, a neurological condition, and because it attacks the brain and spinal cord. A lot of the symptoms are actually quite hidden. And it's, it's known for that reason as the invisible disease. For everybody who, gets MS, the symptoms are a bit different as well, because it can attack you in very different ways. Some people have eyesight problems because it can attack the optic nerve. A lot of people have, mobility issues. And indeed, the common perception of multiple sclerosis is of somebody sitting in a wheelchair. But, but for many of us, that's just not the case. Even though we can have, some fairly extreme mobility issues. Fatigue is is huge. Huge. That's a massive part of MS. We get up very easily and, that can be exacerbated by it being a hot day perhaps. We are often very heat sensitive. For some people, cognitive issues are as bad as the any mobility issues, and it can make sequencing tasks and undertaking complicated things, a real challenge. So so it can present in, in hundreds of different ways. And for each person, the experience is unique.
Peta [00:04:18] And I have to say that really resonates with me. I don't have MS but I have cerebral palsy, and it can vary so much between each person who has cerebral palsy, of course, as it does with many other disabilities. But did you have any misconceptions about MS before you were diagnosed?
Fran [00:04:41] My major misconception would have been, oh, that means I'll be sitting in a wheelchair very soon. That hasn't been the case. It's seven years since I was diagnosed. And that's probably a few more years of having it and not realising it before then. So I've probably been living with this for for more than ten years now. And I mean, I'm not using a wheelchair to get around. So, I think, that has blown my major misconception out of the water completely. I think more about what I can do than what I can't do, and I like to keep pushing the envelope still as much as I can.
Peta [00:05:25] So keeping that in mind that you don't necessarily need to use a wheelchair for your mobility. What challenges do you face as a result of your MS
Fran [00:05:36] Well, my walking is restricted to. It gets pretty, pretty shonky after about 3 or 400m. I can often look quite drunk at that point. Look as though I've had a few. Because, it's quite lopsided. My right side is heavily affected. My balance is shocking. So if I'm trying to, walk across an uneven surface, that can be a real problem. I trip over very easily, and I've had quite a few nasty falls. I also have quite a problem writing. And that one is a very invisible, problem that most people wouldn't expect. But fatigue is certainly an issue, and there are days when getting off the sofa seems like a really big ask.
Peta [00:06:30] You're wearing the beautiful Sunflower lanyard as I talk to you today. So clearly I don't have to ask you whether you choose to wear the lanyard. You're already wearing it, and I love to see it. Why do you choose to wear it? And is there particular circumstances that you tend to wear it in?
Fran [00:06:48] If I'm going out, and particularly if I'm using transport, if I'm, flying or going by train or catching a bus, even on a ferry, it's really handy to, to wear because it's, it's such a visual sign to other people, the, the, perhaps the need to give me a little bit of help or, just be aware of, I have a hidden disability. I first came across the Sunflower disability, the hidden disability lanyard because, I was in, New Zealand with a whole group of other people, 22 of us packed on a boat in New Zealand. And one of the ladies said, if you take nothing else from this trip, you you should go and get your sunflower lanyard. And, she said, I've been using it for a while, and it's absolutely fabulous because it really announces to everybody that, you know, give me a hand. And so immediately at the end of that trip, I went to the help desk to, Auckland Airport on my way home to Sydney, and I got my sunflower lanyard and I haven't looked back.
Peta [00:08:14] So how do you feel when someone does recognise the sunflower lanyard and ask you whether you need assistance?
Fran [00:08:21] Really pleased. I'm wearing it because essentially I'm saying I'd like a hand. And so if somebody recognises it offers a hand, I'm thrilled. That is nothing but good. I'm very, very pleased when it when people recognise it and go, oh, yeah, what can I do to help?
Peta [00:08:45] When you think back of all the times that you've worn the lanyard, is there an exceptional experience that you had that made you feel really understood?
Fran [00:08:56] I think that very first time I wore it going through Auckland Airport and I just walked into the, the departures, area, and you're going through customs and passport control and there's, a queue a mile long snaking around the barriers. And I'm looking at it going, I'm going to have to stand up for half an hour to get through that queue. And then one of the staff just saw the lanyard and just whisked me to, to a much, much shorter queue had me through that process in five minutes. And I was, wow. That is just amazing. I never had to say anything. It was just, the sort of just quiet little bit of, of help that made everything easier. And that was absolutely golden. I would love to see it in every public space. I'd love to see it anywhere on transport because getting around is is is a huge issue anywhere in shopping centres, in entertainment venues, anywhere where people are moving around and, you're out and about. Having that sort of visible sign that perhaps, you know, you need a helping hand. Perhaps you just need a bit more space and a bit more patience, and a little bit more time. Those things can be absolutely critical. So I would like to see it everywhere in public and just to have it, so recognisable. Everybody knows what it means.
Peta [00:10:49] Do you find that there is still a bit of a knowledge gap on what the sunflower is?
Fran [00:10:55] Yes. I'm often asked, oh, what's that? Have you been to it, been been to some, some event or something? And I explain what it's all about and the reaction is always positive, when I do those quite often times when people have absolutely no idea what it is and why I'm wearing it.
Peta [00:11:18] Apart from using it in public transport settings. Are there any other circumstances that you pop it on, so you make sure that people understand that you might need a little bit of help.
Fran [00:11:29] Going to the shops, as it is a big one. Even the sort of the checkout, at a supermarket or something. And very often the expectation these days is you're handling heavy bags, standing in to check out. Somebody may very easily, not pick up that, that you have a real problem. And by the time I've. I've walked around any supermarket, I have a problem. So, so that's a big one for me, is going around shops.
Peta [00:12:02] And for those who are listening, who might not know how to help or how to best help you. What would you suggest?
Fran [00:12:10] Well, I think that that's a really good question. Sometimes, it can be a help with the bag. Sometimes it can be a help with a chair. If I've been on my feet for a long time. There are lots of ways that people can help. Nobody need be embarrassed. You know the person who is wearing it will be absolutely thrilled to be offered help. So. So just go for it and and don't hesitate. Whoever you interact with any, any time in life. Respect and courtesy and a smile go a long way. And, I've never experienced, anything other than that with the when I've been wearing the, the lanyard. It's a wonderful thing.
Peta [00:13:04] And that's another episode for Sunflower Conversations.
Peta [00:13:28] Don't forget, you can always connect with the sunflower between episodes either via our website HD sunflower.com/au via our Facebook Hidden disabilities ANZ or via Instagram hidden disabilities_ANZ. Those links will also be in the description. Thank you so much for listening. Until next time, have a lovely sunflower day.