Episode 25

Work, Life, Balance: On living and working with MS at MS Australia

Andrew Potter and Ebony Moffat share three things in common; an employer, a neurological condition, and a passion for raising awareness of multiple sclerosis and advocating for those living with MS.

On The Raw Nerve this week we sit down with two members of the MS Australia Advocacy team to discuss their work, MS Australia’s commitment to embedding and leveraging lived experience meaningfully and effectively, working with a disability, and the lessons they have both learnt along the way.

Episode Transcript

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 podcast. I’m your host, Jeremy Henderson. Today, it’s my great pleasure to introduce you to two of our MS Australia staff members. Now, MS Australia has a demonstrated commitment to consumer engagement and to embedding the lived experience voice within our organisation. And we do this in a number of ways. We have our long-established National Advocates program. We have a newly established Lived Experience Expert Panel, the LEEP, and we also have people living with MS on our board and on staff.

Today, I’m delighted to be talking to two of my colleagues and both members of the advocacy team, Ebony Moffat and Andrew Potter. Ebony, and Andrew, welcome to The Raw Nerve.

Ebony Moffat:

Hello, everyone. My name is Ebony. I’m 26 years old, and I was diagnosed with MS in 2021. I’m the Comms Officer for MS Australia and started in January. Happy to be here.

Jeremy Henderson:

Thanks, Ebony. Andrew, over to you.

Andrew Potter:

Good morning, everybody. I’m Andrew Potter, obviously. I was diagnosed with MS a long time ago, September 1989, a year after I’d been married and for almost the past 10 years I’ve worked for MS Australia as the National Advocacy Coordinator.

Jeremy Henderson:

Now I mentioned at the start, MS Australia’s commitment to embedding the lived experience voice within our organisation. A question for you, Andrew, why is that so important?

Andrew Potter:

I think it’s absolutely crucial that for the organisation that represents over 33,000 people and their families in the nation, that we demonstrate excellent practice in all that we do. And part of that is ensuring that we have people that are living with this interesting neurological condition so that we can absolutely share what’s accurate, what’s up to date, and demonstrate not only to our team at MS Australia, but also to the broader audience and most particularly people with MS, that we’ve got a really good idea of what we’re doing or attempting to do.

I think it adds life and credibility to all that we do and it is good practice that we happen to have Ebony and myself working for MS Australia. We are living with this interesting condition, MS.

Jeremy Henderson:

We’ll come back to both of you about what you both do at MS Australia, but maybe just briefly to you, Ebony, I remember when we first met and your were interviewed for your role, and you talked about MS Australia really being a dream opportunity for you in terms of being able to bring together both your professional expertise and passion together with that lived experience. I wonder if you just want to briefly touch on that.

Ebony Moffat:

Yeah, absolutely. I mean, I think finding the listing of the MS Australia Comms Officer role came at a really good time when I was wanting to seek opportunities outside of the job that I had. I think it was just really perfect timing that it popped up when it popped up. And for me, professionally, I find especially in communications, you get the most out of your content when you’re passionate about what you’re talking about.

And obviously, as Andrew said, having lived experience of such an interesting disease that is so different for everyone I think really keeps me going. It’s really cool to see all the different stories that we come across every day pretty much. And seeing how I relate to those people as well in my lived experience with MS.

Jeremy Henderson:

Ebony, are you happy to share a little bit about your experience with MS and to talk to us about your initial diagnosis and the journey you’ve been on?

Ebony Moffat:

Yeah, absolutely. My first symptoms were in probably middle of the year 2021. I was dealing with quite a significant period of stress, which I know is a pretty common, I guess, accelerator of symptoms with MS. Basically I went blind in my left eye. It’s like this big dark cloud that fell over most of my vision. And initially I just thought, “I’m really stressed. I’m probably just having a migraine. It’ll go away.” It probably stuck around for about six weeks and then I told my mom about it and she’s like, “You should probably go to the doctor about that. That’s probably something you should look into.” And then, got an MRI and the lesions were found in my brain and was referred onto a neurologist and diagnosed after that.

Jeremy Henderson:

You were smiling when you retold that story, but I imagine that vision loss must’ve been incredibly frightening. And then the MRI and the results, again, very confronting.

Ebony Moffat:

Yeah. I mean, as a kid I did the MS Readathon and I’ve obviously heard about multiple sclerosis. I think a lot of us have, but I don’t think I really understood what MS was until I was diagnosed and I was like, “Well, I’ve got to figure out what this means for me now.” So it was definitely a very scary time, I think especially in COVID as well, not really knowing what that meant for my health in that time as well was quite confronting I would say.

Jeremy Henderson:

Andrew, I wonder if you wanted to jump in.

Andrew Potter:

Yeah, sure.

Jeremy Henderson:

And maybe take us a little bit through your story.

Andrew Potter:

As I mentioned, I was 23 and you never forget when you’re going through a diagnosis of something like this. I had a numb finger and thumb and thought I needed new reading glasses. So I went to the doctor about my finger and thumb on my right hand thinking I’d pulled a tendon or something playing tennis. I hadn’t, went to the optometrist, had a check and had a referral then through to a specialist and saw the specialist a couple of weeks later. And he said at the time… Bear in mind, this is almost 35 years ago.

He said at the time, “I think you may have three conditions. Well, I’ll have to do some tests to find out what they are. You might have leukemia, you might have a brain tumor, or you might have a neurological condition. Come back in a week.” That’s probably the biggest week I’ve had in my life of stress, I reckon. And anyway, I went back a week later and he said the indicators are that it looks like you have multiple sclerosis.

And I’m like you, Ebony, thought, “Oh, I’ve done the Readathon.” This is again 35 years ago. “Oh, I better tell my wife.” So I phoned Joan and said, “Look, this is what they’re saying.” And she said, “Oh, I’ll phone the MS society.” So she did and spoke with an MS nurse. They then contacted me and I didn’t believe it. This was back in the day where I live that MRIs were not available. So I then pretty much a couple of days later had a referral from my GP to go to Victoria for an MRI, had an MRI there a couple of weeks later and it was confirmed. And that’s when my journey started.

So the finger and thumb numbness went, my vision was well again for me, but within six months I’d had a few exacerbations of other symptoms that started to appear and then I was wheelchair dependent for the next six months. So that was my introduction of the first six to nine months of living with MS. And one never forgets, but it was a very challenging time back in the day. And I was young, infallible, young bloke, all that. Recently married. So it brought me back to basics to be quite honest and started to… We obviously had to reflect on what our future plans might be and what do we do about this condition?

So it was interesting time and it’s quite strange to go back and reflect 35 years later nearly, but you never forget the impact it has on your life and it’s certainly been something that’s framed my life’s journey ever since.

Jeremy Henderson:

Ebony, Andrew spoke about the support he sought after that diagnosis. What type of support did you seek out or did you receive after getting that diagnosis?

Ebony Moffat:

Yeah. It’s an interesting question. I think for me initially I had a pretty big break between my being told that I may have MS at actually receiving my diagnosis. I think in that time it was a bit of a bury my head in the sand sort of situation. Didn’t really want to know about it, didn’t really want to ask any questions, or I think it was just a bit overwhelming I guess. But I think the first thing that I actually looked up was I think I just Googled “What is MS?” sort of a thing. And actually a video from MS Australia came up. It was like a cartoon video of a woman.

I think she was riding a bus and talking about all the symptoms that she experiences. And I just found that how simple that language was really helped me be like, “Okay, so maybe I should try and learn a little bit more. Maybe this isn’t the catastrophe as much as I think it could be, I guess.” And yeah, I really sought a lot of support and help from family, from friends, from people around me. I think I really just needed to talk about it and stress a little bit. And eventually I did reach out to an MS nurse as well, had a phone consultation just to get my bearings and get a little bit of professional support.

But I actually had my second relapse in between my optic neuritis and my next neurology consultation and that was when I was diagnosed and I experienced like you, Andrew, difficulties with walking. I wasn’t wheelchair bound, but in the flat that I lived in, I had two steps in my apartment and I really struggled to get up and down those steps. It’s quite confronting.

Jeremy Henderson:

So what period of time are we talking, Ebony, between that first sort of onset of symptoms and that actual diagnosis?

Ebony Moffat:

So I would say my symptoms started in June of 2021, and I was diagnosed in September and then treated in December. So it was quite a quick procession. I think it was the classic case of having two relapses quite close together in I think it was within a month of each other was what really solidified it for my neurologist to then go on and confirm my diagnosis.

Jeremy Henderson:

So, Ebony, I think you are correct in terms of relatively speaking, I think it was relatively quick, but we’re still talking many, many months of, I imagine, a lot of incredible uncertainty and worry. I wonder if I can talk to you both about that. I know that this year, World MS Day, the focus and the theme this year of World MS day is your diagnosis, your MS diagnosis and telling the story of people’s journey being diagnosed. What is it like, I suppose of you, Andrew, maybe first that period of uncertainty of knowing there is something not quite right and being concerned about that, but not actually having that definitive answer. What does that do to your state of mind and those relationships?

Andrew Potter:

It certainly brings extraordinary levels of stress, not knowing. Knowing on one hand that your body’s not right, but then not knowing what’s really going on. And for me it was over 12 months from first onset of symptoms until I had a conclusive and real diagnosis through an MRI. And that was a very challenging time. That situation still happens today with people that are being diagnosed and that’s frustratingly exceptionally challenging for us all to be a witness because we relate back and think, “Oh, yes, I recall when I was going through that journey, it was really hard yakka.” And it’s still three and a half decades later in my world. It still happens.

For some, it’s great that the diagnosis course is relatively quick, but for others it’s a real challenge. And the sooner you’re diagnosed today, the better off you’re going to be given the range of DMTs and allied health supports that you can harness. Back in my day, there were no… I’m old enough to recall the times when I was first diagnosed. There were no DMTs. You just have to go and live, do what you could as best you could. So my journey was a bit interesting for the first decade or so in that progression happened with the lesions by virtue of the fact there were no DMTs approved in Australia at that time.

So it’s wonderful that there are a range of options in relation to medications to assist with symptom management and so on. And we brace ourselves waiting for the ultimate cure to be here so that we can just move forward. But the challenge is real. It takes far too long for us to be diagnosed. And the quicker we are, the quicker we can be on DMTs and the less impact potentially some of the symptoms we experience will have on us for the longer term. So bring it on.

I say quicker diagnosis as best we possibly can because everyone that you speak with that’s living with this condition remembers their diagnosis story because it’s a life changer and it reinstates and reinvigorates where are you going to head. What are you going to do? But it’s a life’s absolute, an alteration to your life’s journey. No question.

Jeremy Henderson:

How did that diagnosis alter your life’s journey, Ebony? What were you doing? Where were you up to in your life in terms of education, in terms of employment, in terms of living your life, how did it have an impact and did it change what you were doing at the trajectory that you were on?

Ebony Moffat:

Yeah, absolutely. I mean, I think for me it was due to COVID. I was initially working in a retail store and obviously COVID sort of knocks that back a little bit. And so I think I had to take a bit of a step back and think about the things that I want to do. Again, thinking about being compromised in a world of COVID as well, thinking about things that are compatible with a life where I need to look after my immune system and protect myself. So yeah, I think for me being a naturally quite creative person, I turned to communications as my way of finding that, I think office work is definitely what I found suited me best, given my circumstances. I would say that that’s probably the best way that I could have gone about it and worked out the best.

Jeremy Henderson:

Where were you up to in your life in terms of work and employment, Andrew, when you were diagnosed?

Andrew Potter:

We’d moved. I used to work in Melbourne and Sydney and we’d relocated to Tasmania because previously I’ve worked as a travel consultant and then I was working as a fresh food company as their sales manager. But obviously, it was challenging for me physically, so I couldn’t. And particularly given I was using a chair at the time and so on, the fatigue was starting to happen. I made the decision myself because it was just too difficult, and I changed positions. Actually of all things, I applied for a position that I saw advertised in the newspaper and it was working for an employment service for people with disability.

I thought, “Well, this is interesting. I wonder what they do.” And naively I applied for position and was successful. And that was probably inadvertently a great decision because that then started my journey working in this field. And so it’s included over the years I’ve worked in employment support and accommodation, supported accommodation. Support and advocacy. I’m a good storyteller. Communications are all that is, Ebony. And the journey and the challenges that people face, if you put it in a good story, it’s easy to use that as leverage for positive change.

And that’s been my mantra I think all the way through the last 30 odd years that it doesn’t take much to implement good positive change. And if you have a good story and you’ve got other people that have good stories, stories are amazing, powerful mediums to implement positive change. So that’s pretty much I’ve been a… And people joke with me all the time, “You’re a good talker, a good storyteller, but if it’s for the right reason and we can implement by using people’s stories positive change, then we’ve done a good service.” It’s pretty basic really.

Jeremy Henderson:

So, Andrew, I was going to ask you the question, what does meaningful work look like to you? But I think you’ve just answered that question totally unprompted, so thank you. Ebony, if I can ask you that question, for you, what does meaningful work look like?

Ebony Moffat:

Yeah, absolutely. I mean, I think very similar to the tune of what Andrew said, I think it’s really… Communicating for me is obviously what we do as humans all the time. And I think when you are passionate about something and you want to advocate for something, that’s where I get my fire from and pushing for change. Self-advocacy is something that you learn as a massive learning curve, at least what I found from diagnosis is like when you’re going to the doctor and you’re going to your neurologist, you need to be asking the questions and you need to push for yourself.

I think using the voice that I’ve gained for myself and for my own health and safety, I guess being able to use that for other people as well I think is so important.

Andrew Potter:

It’s really empowering, isn’t it, that someone said to me years back that, “Living with a neurological condition, the best thing you can do is to be your own CEO of your body and your mind as best you possibly can because no one else is going to really do it for you.” They may well assist you, but you need to be and feel empowered to be your own managing director of your own sense of self. And that’s hard sometimes, but the power of support and good information and good advice is amazing. And if you can harness that from the support services that are around and your family and your friends, then that’ll serve you much better than just sitting back and waiting for things to happen because it doesn’t.

Ebony Moffat:

Absolutely.

Jeremy Henderson:

A follow-up question for you, and again, I think you’ve both sort of asked and answered this, but does working increase your quality of life and how do you find that balance and make sure that it doesn’t actually negatively impact that quality of life? And obviously, working for an accommodating employer is obviously key. I guess, first of all, does it increase your quality of life? And to that second part of the question, how do you make sure it doesn’t negatively impact?

Andrew Potter:

After a few years of being diagnosed, I had repeated exacerbations of my symptoms and we had a young family then and it was too difficult for me. I wasn’t well enough to work, so I chose to resign from my position that I loved at the time. I was at home and played dad at home for seven or eight years with our girls and my wife went back to work full time. Then I progressively DMT started to come on the market that assisted with my symptom management. I was hungry to go back to work. Kids were at school and I started part-time in a role and then that set me back in vein of working. But it took a long time because my body had taken absolute hit with the impact of MS.

Obviously, it’s changed our place in community coming back to work and that I was earning money. We could afford to pay our mortgage more than we were otherwise. We could do things that we were not able to do fiscally when the children were young. So it’s made a huge difference being able to work or be it only part-time. But for the past 20 odd years I’ve worked part-time. My wife still works and that’s made a difference absolutely fiscally. It’s also a sense of self and sense of purpose being at work and your identity isn’t necessarily solely around what you do for work, but as a person it’s empowering and gives you a sense of place and value.

I love doing what I do and I think for the benefit of not only my own sense of place and self, but if I can make a difference in the community for other people, then I provide a good service.

Jeremy Henderson:

How about you, Ebony? How do you find that balance and make sure that work doesn’t impact on you, negatively, but also sort of enriches your life?

Ebony Moffat:

I think going back to what Andrew was saying in terms of when I was diagnosed as well, I think having difficulties with vision, difficulties with mobility, I think really made me have to take a good break for myself. I think once I got back into work, being able to earn money for myself, obviously, financially, you have to think about that. And at the time I was living by myself and my family were out of state. So a lot of different challenges with that.

But once I started working, I think I found the flexibility in casual work. Initially I took a casual job in the government and that really helped me get back into the swing of things, remember the things that I can do and the things at work that I really enjoy. And then moving on to more permanent work. I definitely had to learn that working full time is a lot of work and a lot of energy, especially for someone with MS who deals with fatigue, which is so common. I think coming to a place like MS Australia where it’s part-time, it’s flexible. And being aware of my own limits and being able to communicate that as well is just, “Yeah, I think that’s what I try and keep at the forefront.”

Jeremy Henderson:

I think MS Australia is always keen to make sure that we’re advocating on behalf of the community we represent, and a big part of that is to making sure that people living with MS are supported in the workplace. How does MS Australia support and accommodate you both in terms of the work you do? Maybe starting with you, Andrew?

Andrew Potter:

My history with MS Australia has been that I’ve always worked from home even before COVID and the onslaught of lots of people working from home nowadays. So working from home for me is the best case scenario because I’ve only got to go from the kitchen to the dining when I’m at work. So for me, that’s great. There’s no commute to and from work. Technology assists me with all that I do every day, which is fantastic. I can manage my fatigue level better from home obviously.

I can sit next to the air conditioning unit that I have, which looks after my heat sensitivity and so on. So that’s good. My allocation of time is set so that I work 25 hours and it’s over four days, so they’re not big days. Undoubtedly, there’s flexibility that’s within that time, which is wonderful. The day I don’t work is my day, which is my recovery day really more than anything.

I’ve done this for nearly 10 years and I really welcome every Friday because for me it’s the day when my body takes stock and my mind and I’m able to recalibrate and get ready for the weekend and then I can know that I’ll be okay to come back to work the next week. That’s made a difference. I think the other thing that’s helped me work has been part of the benefit undoubtedly that my NDIS plan has had for me as well. So I don’t have the challenges like I used to have years gone by of mowing half the lawn one weekend and then the next weekend do the other half of the lawn and I’ll be fatigued all the time.

So simple things like that have made a big difference. Someone to assist coming in to provide in-home supports sometimes a couple of times a week has made a difference too. So it’s not only the flexibility within working for MS Australia, it’s also the other allied supports that I’ve had and have been in receipt all the last few years that have made a really big difference and it’s made it okay and my body okay to continue to work.

Jeremy Henderson:

Ebony, you are a relative to Andrew’s long tenure with MS Australia. You’re a relative newcomer, but I’m hoping that you can give just as glowing a testimonial to MS Australia in terms of the way you’re supported in the workplace.

Andrew Potter:

Now, is your opportunity, Ebony?

Ebony Moffat:

Yeah, absolutely. I mean, for me, I think coming across a workplace that is completely remote is so… I can’t even use words to describe how much it helps having that. That’s such a simple thing to manage your fatigue is just to be able to work from home and still have the time to do some of the extra things around the house, have the energy to do those things as well. It’s also save a lot of money on petrol and parking and all of those sort of things. So that’s another bonus. Coming from a job that was sort of hybrid, but I think in the aftermath of COVID even though it’s still very much happening.

I think a lot of offices have the perspective that people should be going into the office more often than not. And I think that that was a really hard thing for me to be able to fulfill in my previous workplaces. But I think here it’s just having that flexibility of working from home and I think being able to say, I’m really not feeling well at the moment. I think I just need to take a break for a little bit. And being able to communicate that and not feel like I need to pretend that I’m going okay and needing to mask those symptoms, which is so often encouraged in other workplaces, I think, yeah, it’s been really helpful.

Jeremy Henderson:

A question for both of you and I imagine this is much more of a challenge when you’re actually professionally engaged and working in this particular disability space around MS and living with MS as well. How do you find that balance? Because you are much more than your MS. How do you make sure that you don’t become defined by your MS? And maybe another way into this question, Ebony, what are your passions outside of your work and in terms of telling the audience who is Ebony and what are the other things that you love doing? How do you find that balance? Because you’re obviously so much more than just the condition that you have to live with that impacts you so much.

Ebony Moffat:

Yeah, I mean, absolutely. I guess that’s another part of what’s so great about this job is I’m often asked by opinion on I guess what sort of information we should be sharing or talking about to our audiences and all of those sorts of things. But I think there’s a sense of boundaries there, I guess from everyone else. It’s like when they come to me asking those questions, it’s here’s a question I have for you and there’s not any pressure for me to answer it quickly or if I’m not comfortable answering it, I don’t have to or I’ve never been made to feel uncomfortable using my lived experience and my perspective within this job.

I think that that has really helped with my enjoyment of this work because, again, I get to incorporate the way that I have experienced MS into my role. I don’t think that I find that exhausting or I don’t really struggle with that at all. I actually quite enjoy it. And to the other question, outside of work and all of that stuff, I really enjoy textiles. So I actually studied design at ANU, so I really enjoy doing basket tree and tapestry and embroidery in my spare time.

Sometimes make earrings, sometimes just tinker around with my iPad, do a bit of drawing, all of that sort of stuff. So that’s where I spend my time. I’m a gym goer as well. I go for going for long walks and bike rides. We’ve got a cat and we can take him out in the pram sometimes.

Jeremy Henderson:

Can you top that, Andrew?

Andrew Potter:

There’s no topping it, Jeremy.

Jeremy Henderson:

You don’t have a cat?

Andrew Potter:

No, we have had cats when the kids were younger. They had one each, so they didn’t fight. I think answer to the first part of the question is that I’m a person first, and MS is second in my world. So when I finish work, I finish work and I’m Andrew the person, not Andrew the person with MS as best I can. Sure it’s with me all the time, but I try and separate that from me. I’m a dad, I’m a husband, I’m a friend. I’m involved, and I volunteer in environmental things on the coast here as best I possibly can.

Not as much as I used to be able to do, but I still contribute. Grew up believing in clean air, clean dirt, clean food. I still try and practice that as best I can, and that gives me a perspective outside of all that I’m exposed to working from MS Australia. It can be all consuming sometimes. So for me, it’s very crucial that I separate when I finish work and I do other things that are outside of that sphere as best I possibly can.

So I’ve got a whole world, a whole globe of relevance outside of MS as well because it’s not necessarily the entire controlling authority within, but it’s part of my journey. But there’s much more to our lives than just having MS. So I do lots of other things, big garden. Try and bike ride as best I possibly can, which is interesting sometimes. But I think it’s important to maintain solid relationships with our friend network as well and do other things outside of all that I’m exposed to.

I mean, it can be challenging sometimes because we’d be witness to so many different people living with MS and everyone’s journey and trajectory is different or with respective challenges. So we need to make sure that mentally we look after ourselves too. I’m very conscious and cognisant of that, hence my endeavor to do other things outside of not only work, but to be a real person as best I can.

Jeremy Henderson:

MS Australia is incredibly committed to embedding the consumer voice that lived experience voice into our organisation. You can see that demonstrated by the people working within our organisation on the staff team, yourself, Andrew and Ebony. People, members of our board, but also in terms of our National Advocates program and our newly established lived experience expert panel. It’s something that’s really, really important to the organisation. How does that make you feel as individuals living with MS when you see that demonstrated commitment within our organisation? Maybe if I can start with you, Andrew.

Andrew Potter:

I think it’s first class in that of all things we need to, as the organisation representing and attempting to provide research outcomes and positivity for people with MS, we need to practice what we preach. And I think part of that is through the lived experience expert panel and through the National Advocates program that we harness that and demonstrate that at that good practice is ensuring that we do include the people we’re here to serve in all that we do. It just makes very practical and common sense to be quite honest. So it’s great that we do it and we should be doing it and we do, which is terrific.

Jeremy Henderson:

Thanks, Andrew. Ebony, how does that… Again, you’ve been with us for a relatively short period of time compared to Andrew, but how does that make you feel when you see the organisation that is so committed to ensuring that we’re accurately capturing the lived experience voice that we’re genuinely representing the community and what the community needs?

Ebony Moffat:

I mean, it’s just so important, isn’t it? Having an organisation, seeing an organisation walk the walk. I think it’s something that we don’t see all the time, especially in the disability sector. And I think it’s great to see, like I’ve said before, all of the different stories that people have with their MS diagnosis, with the things that they experience with their MS. and just being a part of that is really important. And it’s so exciting to be able to contribute my voice as well in my own way.

Jeremy Henderson:

Two final questions for you both. Just staying with you, Ebony. So if there was one thing you could convey to the general public about MS, about the condition, about living with MS, and obviously there are a multitude of things to convey. One of the things we speak about so regularly is the fact that MS is an incredibly complex condition and that the impacts and the way it impacts individuals is different from one person to the next.

But if there was one thing that you could say to somebody, what would that one thing be that you would tell somebody about MS that you think would be valuable for them to know?

Ebony Moffat:

I think we’re not a monolith. I think people with MS have very different experiences with the symptoms that they have and the way that they move through life. And the way that they approach their identity and what it means to have MS as well, all of those things. I think people who don’t have MS, if you have questions, be curious and be open to the answers. I think that that’s the most important thing for human connection in general is just curiosity in other people’s lived experience.

I think that having MS has been such a learning experience of seeing so many other people be so open about how they move through life. I think, yeah, just engaging in conversation, I would say is the best way to go.

Jeremy Henderson:

Thank you. Andrew.

Andrew Potter:

I would agree with absolutely what you just said, Ebony. I think also that two things in my experience for so many decades now, MS only touches good folk generally. So welcome to the family of good folk if you’re listening. And the other thing that I would say is that education and information is power. So the more information you can find out about MS, the more you can educate yourself about it and those close to you. The less daunting and less dramatic it may well be for you. If the information and education is empowering for you, then you’ll be best served to deal with the challenges that may well present.

Jeremy Henderson:

Andrew, that’s a beautiful segue to my final question because that idea of always learning and being curious and wanting to find out more and the importance of that knowledge, is there anything that either of you have discovered about MS since you’ve been at MS Australia that you found interesting or remarkable or that you didn’t know before joining this organisation? Perhaps start with Ebony.

Ebony Moffat:

Yeah. I think the thing that I’ve learned a lot is just how much research there is into MS in all of the shapes that it takes in different people. I think it’s just so interesting to see how many different studies are coming out every day, really, and what people are learning about from exercise and diet to DMTs and everything in between. I think it’s really encouraging. As someone who didn’t know that there was that much research, it’s been really cool to learn and see since starting here.

Andrew Potter:

I can contribute that I’ve born witness to and it’s been wonderful to see over the years, the increasing number of people with MS living with MS that are contributing to research. I thought I was pretty well across a lot of things in the MS sphere when I first started working for MS Australia. But it’s amazing now that universities and research institutions not only throughout Australia but throughout the globe, are including people with MS in their studies.

And that’s, for me, I think been the biggest eye-opener that I’ve borne witness to since I’ve been within MS Australia. And it’s fantastic. As some universities uses their catchcry, nothing about us without us, it makes for good practice that we are being used as contributors to research, and we’ve got a lot to give.

Jeremy Henderson:

On that note, thank you very, very much to both of you. Ebony Moffat, Andrew Potter, thank you for joining us on The Raw Nerve.

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.

Views expressed on the Raw Nerve Podcast, including any discussions or reference to medications or treatments by podcast guests, do not necessarily represent the views of MS Australia and should not be seen as either an endorsement or rejection of a treatment.

 MS Australia does not recommend any specific treatment for people living with MS. Decisions about any treatments, taking into consideration the potential benefits and side effects for each individual’s circumstances, should be made in careful consultation with the person’s neurologist.

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Work, Life, Balance: On living and working with MS at MS Australia