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.
Sharlene Brown:
Today, we mark Women’s Health Week 2024, and explore multiple sclerosis, the lived experience of MS, and women’s health. We know that our podcast listeners include people who are newly diagnosed with MS, who know someone with MS, are curious to learn more about MS and MS research, and also the carers.
Today’s episode brings all that together. My name is Sharlene Brown, and as someone living with RRMS, I’m excited to bring my lived experience as a female representative to the MS Australia Board. Today, I’ll be talking to our fabulous Head of Research, and two young women who like me, live with MS.
MS Australia is the largest Australian, not-for-profit organisation dedicated to funding, coordinating, educating, advocating for MS research, as part of the worldwide effort to solve MS. We also have a commitment to embedding, and leveraging lived experience of MS meaningfully, and effectively.
To that end, our first guest is the fabulous Ebony Moffat, who is a member of the MS Australia Advocacy Team, working as a communications officer, and has a passion for raising awareness of MS, and advocating for those also living with it. Our second guest is Lilian Law, originally from New South Wales, Australia. She’s joining us from New York City in the US and is passionate about mentoring other women with chronic illness, and disability.
Now, Lily is a former Diplomat as Executive Assistant to the Australian Ambassador to the UN and a final year law student to the Australian National University. She’s just commenced working (in) corporate law in New York. MS is a disease that commonly strikes at the prime of people’s lives, and most of us expect to be able to immerse ourselves in careers, start or add to a family, pay off the HECS debt, or simply live life to the fullest.
MS is the most commonly acquired neurological condition affecting young Australians and is also three times more common in women than men. The reason for this is an enduring mystery of MS research. I’ll be asking our third guest, Dr Julia Morahan, MS Australia’s Head of Research, about some of the clues we have to solve the puzzle of why three out of four people who develop MS are women.
This year’s Women’s Health Week shines a spotlight on some of the biggest issues in women’s health. Under the banner of Your Voice, Your Choice, we wanted to explore how some of these issues relate to MS, and how they’re experienced by women living with it. Year round, including during Women’s Health Week, MS Australia is keen to grow awareness of MS, of women’s health, and wellbeing, and of the lived experience of MS.
Good morning, thank you, and welcome to our guests today. Ebony, straight into the questions for you. You were diagnosed with MS three years ago, so in 2021 at the age of 24. Can you tell us a little bit about what your lived experience is like, and about your diagnosis generally?
Ebony Moffat:
Yeah, absolutely. I’ve talked about this before, but my very first symptoms, I went blind in my left eye. It was just like a really dark cloud. I could see through the corner of my left eye, but everything else was just completely dark. At the time, I was having just a really stressful experience. I was like, “Oh, it’s just a stress migraine. I won’t think about it too much.” Then it lasted for about six weeks. It wasn’t until I mentioned it to my mum, and she was like, “That’s not normal. You should probably go to the doctor.”
Yeah, went to the doctor, had the MRI, and the lesion showed up. Then a couple of months later, I recovered from that relapse, and then I had a spinal cord relapse. At that time, I was living in a little flat that had these little steps that would go down to the kitchen, and I really struggled to walk down those steps. I remember talking to my parents, and just saying, “I feel like I’m geriatric. I just can’t walk.” Then, yeah, so that was …
Sharlene Brown:
That was in ’21. Wow.
Ebony Moffat:
Yeah. It was quite scary. I think, yeah, the main thing that I felt a lot at that time, being someone who was really into fitness, I definitely lost a lot of trust in my body. I think that’s something that I’m still working on now, really.
Sharlene Brown:
Yeah. Did you know much about MS before you were diagnosed?
Ebony Moffat:
I did the MS Readathon as a kid.
Sharlene Brown:
We all did that!
Ebony Moffat:
I know. Exactly. We’ve done that at times, I know. But yeah, so I did the MS Readathon. Obviously, I’d heard of multiple sclerosis. I think there’s very few people who haven’t heard of it. But I didn’t know what it was. When I was told that I potentially had it, I thought that it was a terminal illness. It was really scary. It took me a couple of months to gear myself up to actually google what it was, and what it looked like. Yeah.
Sharlene Brown:
Oh, you showed more restraint than me. Yeah. Yeah. “I’m going to go to Dr Google.” Interesting. Because you’re working with MS Australia, which is just fabulous, and you’re in communications, and advocacy, how is your diagnosis influencing your day-to-day activities with MSA, or does it not? How do you deal with that?
Ebony Moffat:
Yeah, I think working in an organisation that is so informed around MS research has been really helpful. I think all of my co-workers are so understanding. If they’re asking me a question, they want to make sure that I’m comfortable to answer the question, and all of those sorts of things. I think to have that grace, and that ability to say, “Look, I’m actually having a bit of a fatigue flare up at the moment, I think I need to lower off for the afternoon,” having that flexibility has been really, really helpful.
Then on the other side of that is, I do the media monitoring for MS Australia. I get to see all of the research that’s coming out, and all of the great stories that people are sharing online about their experience, how they’re fundraising, and advocating for people with MS. Yeah, it’s a really incredible experience. I’m really enjoying it.
Sharlene Brown:
Oh, that’s fabulous.
Ebony Moffat:
Yeah.
Sharlene Brown:
Thanks for sharing that with us. Now, Lily, love your last name, by the way, Lily Law, who’s doing law.
Lily Law:
It works well.
Sharlene Brown:
Yeah, you did that. It was almost as if you were going to always end up in that area. I don’t know. You were diagnosed with MS just over 12 months or so ago. Can you tell me a little bit about your initial diagnosis?
Lily Law:
Yeah, absolutely. Thanks, Sharlene. Look, when I was first diagnosed, it was in July of last year, just over 12 months ago now. I was 21 years old. I was living by myself in Canberra, and very, very similar to Ebony. Funnily enough, I woke up one day, and I had sudden onset blindness in my left eye. But me being me, I was at the time training for a powerlifting competition. I feel embarrassed saying this, but I still decided to go to gym, because it was deadlift day, and I couldn’t possibly miss deadlifts.
Sharlene Brown:
Oh, my goodness.
Lily Law:
Now, within a couple of days, I listened to my parents. I went to my GP. I remember seeing him. He was very, very concerned. He told me to go straight to the hospital, and about five minutes later, I was standing outside the GP clinic thinking, “Okay, I need to go to the hospital. Should they have called an ambulance?” Because I can’t drive. I ended up taking a $50 Uber to get to the hospital.
Sharlene Brown:
As a student, that’s a lot of money. That was your food for a fortnight.
Lily Law:
You’re exactly right, Sharlene, completely.
Sharlene Brown:
Exactly. Yeah.
Lily Law:
For me, that was lesson one in learning to ask more questions, and maybe saying, “Hold up.” Even if you’re in front of a doctor, maybe twice or more your age. But yeah, that was my initial experience. I was hospitalised. I was youngest in the stroke ward by about 40 years. At the time, it was really scary. My family lived in regional New South Wales. They couldn’t come and see me immediately. I wasn’t really super comfortable sharing with many of my friends either. It became pretty isolating, and certainly not knowing at the time whether I would get my eyesight back, because they really didn’t know what was causing this.
Even trying to question whether or not I could continue uni for the semester, I have kept up working full-time and having a full-time load at law school for my entire degree, and even just questioning whether or not I could keep up with my goals, and my plans as certainly as someone who’s always been very strict to the plan. That was the initial.
But I suppose from there, it was a month before I was diagnosed, which in hindsight is so lucky, I realised some people, it takes years if not decades, to receive their diagnosis. I did CTs, MRIs, and I ended up getting a lumbar puncture, which I’m so glad I’ll never have to do again. But yeah, with the initial eyesight loss in combination with something I’d noticed, hadn’t even thought twice of, or thought anything of it at the time, which was some minor tingling down my arms and legs, which I thought was as a result of perhaps my exercise or stress. But with that, and (in) combination with the eyesight loss, I received the diagnosis after just four weeks and got on treatment since then.
Sharlene Brown:
I’m picking up on some themes here of us not exactly taking our health seriously at the beginning. That we put it off to, “Oh, it’s just another part of what we’re doing. We’re working too hard.” Look, I’ve got to admit, too, at the time, a bit like you, probably Lilian, I was doing a lot of sport, working at a law firm, private practice, so quite stressful. Absolutely loved the whole cut and thrust of the billable hour. Got into it, love, love, love, kept pushing.
I was numb from the waist down. I thought, “Oh, I’ve just hurt myself rowing or playing touch footy.” It took a nurse friend who said, “Oh, that’s actually not normal behaviour to do that,” to make me go and get diagnosed myself. I can relate to what you’re both saying there. But Ebony and Lilian, has your eyesight returned? Have you got most of that back?
Ebony Moffat:
Yeah, that’s returned for me. If I’m having a particularly bad flare up like a migraine or something, that’s probably the first sign. My eye will start throbbing. But for me, yeah, my eyesight’s completely returned. Yeah.
Lily Law:
Mine is back as well, thankfully. It’s interesting though. I do find with the flare up, it’s sometimes a little foggy, and weirdly though, it’s the day-to-day basis that I’ll still get that numbness, and tingling. But that’s of course far more common.
Sharlene Brown:
Do you listen to your bodies now? Now, this is a big thing. I learned that very early on. Now, I’ve been diagnosed about 23 years, so still working full-time. That should give you some confidence that you’re going to be okay. But I must say, when I get really tired or really stressed, I feel that my body goes straight to the tingles or straight to the eyesight in terms of a bit of fogginess. It’s like, “Okay, time to pull back.” Are you guys seeing those markers? Are you listening to your body?
Lily Law:
I think if I was being honest, maybe less than I should. I guess it’s the drive. It’s wanting to keep up with everything. It’s having big aspirations. It’s trying not to let yourself feel more limited than you want to, because I feel as though we already feel really limited already. There’s a lot of self-doubt, negative self-talk, and the idea that letting or giving into something like an MS symptom is almost losing for that day.
But I think it’s almost learning. Look, even if all you do that day is go for a walk by way of exercise, and you don’t lift a stupid amount. Or even if you work from home instead of just taking … Yeah, maybe not, maybe not. Or even if you make the choice to work from home instead of in the office or whatever it might be, making small choices, but admittedly perhaps less often than I should.
Sharlene Brown:
Great. Julia.
Ebony Moffat:
Yeah. I agree with that.
Sharlene Brown:
Do you agree, Ebony?
Ebony Moffat:
Yeah.
Sharlene Brown:
You’re all right. Let’s hear it.
Ebony Moffat:
Honestly, for those sorts of things as well, what I find, the opposite of that, when you have one of those days where you’re like, “I’ve got so much energy. I can do so many things.” I don’t think that I’ve had a day where I’ve had that energy, and been like, “Okay, let’s pull back, and be paced.” I’m like, “Let’s go to the gym. Let’s do the shopping list. Let’s do the cleaning,” all of that sort of stuff.
Sharlene Brown:
I’m with you. I’m with you. I get a moment where I’m feeling really full of it, and I do use it all. My husband goes, “Haven’t you learned to pace yourself?” I’m going, “Hell, no. Absolutely not. No.”
Ebony Moffat:
Yeah. This is my one chance to use all my energy. Then the next day, you’re just wiped out.
Sharlene Brown:
Yeah. Julia, welcome. One of my favorite people here. Why is early diagnosis so important?
Julia Morahan:
Okay, to counter everything that you’ve said, it is really important to listen to your body for a number of reasons, and really important to act on those symptoms. We know from the research now, and we’ve got really good long-term evidence to show that early intervention, and particularly early treatment of MS with a disease-modifying therapy, can have really excellent long-term outcomes.
People are reaching milestones much later, living really well for much longer. We know that the medications can do really well at suppressing the relapses, but we’ve now got evidence that they can actually stop some of those later accumulations happening. The message from me is to listen to your body, possibly listen to your parents, or your friends, and when you do have these symptoms that are quite odd, just get them checked. Just go and see if you can sort them out sooner.
Sharlene Brown:
I wonder if that is a very female thing, too. I can’t say that because my husband will wait until something’s falling off, before seeing a doctor. But we tend to put things down to, “Oh, we just run down, we’re just overworked, or we’re just a bit stressed.” We don’t listen to our bodies. But what you said then about the disease-modifying therapies, Julia, really hits home.
Because when I was diagnosed many, many years ago, I was told I probably had 10 years of being able to work. For someone like me who had worked her backside off to get through law school, to do what I did to travel to get to where I wanted to, I was like, “I’m not ready. No. It’s not going to happen.” I’m stubborn. I’m really quite stubborn.
Those DMDs have allowed me to work full-time, to do a lot of volunteer work. I have a child, and I’m still not lifting as heavy as Lilian, I do get out of bed in the morning. I occasionally go to the gym, which I think is quite a success story myself.
Lily Law:
Every day wins, Sharlene every day wins.
Sharlene Brown:
Thank you, Lilian. Yes, got to record that, and keep that. That’s the direct result of these drugs that we’ve been able to research and bring into foray. I am incredibly grateful for those.
I’m saying with those, I don’t know what kind of treatment Lilian, and Ebony are on, but obviously being able to have access to these very, very early is really going to help shape the outcomes.
Yeah. Okay. I guess for all women, managing health and wellbeing can be challenging. We know that. We’ve spoken about that. Lily and Ebony, can you provide some insights into the strategies that you’ve developed personally to navigate that, and maybe looking at the physical, emotional, and cognitive aspects of living with MS whilst also trying to achieve your day-to-day goals, and aspirations?
Lily, do you want to go?
Lily Law:
Yeah, absolutely. I think, for me, the biggest thing has really been the mental battle. I touched on it a little earlier, but especially in the beginning of diagnosis, it was questioning like, “What does this mean for my future? What can I and can’t I achieve?”
Especially when you’re in the midst of an episode or a relapse, it can feel really all or nothing. I know from my parents’ point of view, Sharlene, it very much echoes what you mentioned earlier about the understanding of what a timeline looks like for someone living with MS. I had no family members or didn’t know anyone that had experienced MS. At the time, my doctor couldn’t tell me what would happen in 10 years, 20 years. No one can.
But I think, for me in particular, a lot of young women struggle again with these ideas of self-doubt, this insecurity, that comes down to even a level of insecurity as to whether this symptom is normal, and maybe not seeking help when you need to. But on the daily, when it comes to your mental wellbeing, and your physical wellbeing, I think MS so easily really fuels a lot of the struggles that for young women are already there.
For me, how I’ve tried to overcome this, and navigate it more broadly is thinking about, “Sure, MS provides limiting factors on your life that can’t be overcome, that can’t be avoided.” We don’t know when a relapse might come up, and everyone will experience MS differently. But that’s very different, the limiting beliefs, we or others, whether it be family, friends, our employer, our doctors, let alone ourselves put onto us. That might impact, again, this idea of self-doubt that we can live with on a day-to-day basis.
I have really tried to utilise finding outlets, and finding, let’s say, achievable goals, small goals, bigger goals that I can do, and that I’m confident I can do regardless of the limiting factors set on by my condition. Yeah, that looks like empowerment through fitness, whether that’s yes, lifting something heavy, just going for a walk that day or doing some yoga depending on what’s best for me, what I can handle at the time.
But also, using the support available, using all of these people around us that believe in us, and want the best for us to set bigger goals. Know that while at the beginning, a lot of people might’ve told me, “Look, maybe this won’t be possible for you anymore, Lil. Maybe this might not be able to happen.” Knowing now that I know my health best, I can be my biggest advocate. When it comes to setting big goals, I can say, “Yes, I can accept challenges.” Understanding that while MS will affect me every day, it doesn’t have to affect my whole life for what I want to do, and what I want to achieve out of it.
Sharlene Brown:
Yeah, good attitude.
Lily Law:
I guess, again, it’s setting goals, whether they’re small ones or big ones, and trying to overcome them, whatever that looks like.
Julia Morahan:
That’s fantastic, Lilian.
Sharlene Brown:
So well said.
Julia Morahan:
As a person who doesn’t live with MS, I just need Lilian to call me for five minutes every morning, and just give me a speech about what’s possible, and being sensible. That’s just fantastic advice for everybody, particularly people …
Sharlene Brown:
Setting small goals, too.
Julia Morahan:
…living with potentially limiting conditions, but understanding when to pay attention to the limits, and when to push through them.
Sharlene Brown:
Thanks, Lil.
Julia Morahan:
That’s fantastic.
Sharlene Brown:
It’s the same with any chronic illness, isn’t it? Or neurodegenerative type of illness. Yeah, great advice.
What about you, Ebony? How do you provide yourself with the strategies to get through a day?
Ebony Moffat:
It’s a good question. I think, for me, especially of the last couple of years, my MS diagnosis, and there’s been a few other health things that have come up for me. I think that those things, whilst MS was the first thing that knocked back my trust in my body, those health things definitely were roadblocks.
I think the thing that has helped me most out of that is I’m currently working with an exercise physiologist who prescribes me workouts. I go to the gym three to five times a week. I’m trying to do cardio. Similar to what Lilian’s doing, getting strong, getting those muscles going. I think that’s really helped me see myself building up that strength. Again, going from, I was quite a regular gym goer before I was diagnosed. It just really dropped off when I was really struggling to walk.
It took me a while to get to that point where it’s like, “No, you can actually test your boundaries, and you can see what your body is capable of.” Obviously, you don’t want to push yourself too far, because you can have a flare up or you have a bad day. But I think testing those limits, and getting comfortable with just seeing how far you can push it within reason, as I say, I think that that’s been really helpful for me.
When it comes to seeking support from family, and friends, I think, I just try to be as honest about my symptoms as possible. Just say, “Look, this is what I’m going through right now.” A lot of my friends know pretty much from the jump that if I say, “I’ll come along to an event,” that might change. Within a day, I could all of a sudden just feel really tired, and not be able to come along. I’ve got very fortunate to have really supportive friends who are very understanding. That doesn’t bother them. I think that’s been amazing.
I think in terms of mindfulness and, I don’t know, general mental health stuff, I’m a bit of a crafter. I love a little ’crafternoon’. Do a bit of embroidery.
Sharlene Brown:
’Crafternoon’! Oh, I love that.
Ebony Moffat:
Yeah. We love our ’crafternoon’. I’ve just started doing these diamonte colour-by-number things. They’re terrible. They look awful, but they’re so satisfying. For me, there’s so many different places that you can pull strength and support from. Yeah, just really thinking about those things have been really helpful for me.
Sharlene Brown:
Good on you. This three to five days a week in the gym thing, guys, stop setting the bar so high! Mind you, my neuro did say to me that to get the most out, and to grow, now I’ll get this wrong, and Julia will correct me, to get the most out of my oligodendrocytes, I should be doing three to five sessions of HIT a week. Anyway, we’ll see how we go with that.
Ebony Moffat:
Oh, I don’t think I could do HIT that often.
Sharlene Brown:
No, exactly. But Julia, into the scientific side now. Let’s delve into the research. What are some of the clues that we have to solve the puzzle of why three out of four people who develop MS are women?
Julia Morahan:
It’s a really interesting question and has been from a research perspective for a long time. We do know that we have really more than the majority of people living with MS being women. The other thing about that proportion is that the number of women who are being diagnosed with MS is increasing and has been increasing quite rapidly.
MS comes about because of both genetic, and environmental factors that’s currently the risk is kind of a mix of the two. But genes don’t really change that much. They don’t change that quickly. It has to be something on the environmental side that is really driving this preponderance of women with a diagnosis, and the increasing rate.
We think there are a few factors that are floating around that might be interesting. We know UV, and vitamin D, we know the Epstein-Barr virus, which is the one that causes glandular fever are all risk factors. Not sure if those rates have changed. The one that I’m really curious about is actually sex hormones. Estrogen, progesterone, and changes with that over time. That’s a really big area of focus.
But I think really understanding how all of these factors work together will be really interesting. I think the answer at the moment, Sharlene, is we’re working on it. But it also I think, for me, is a really interesting way of trying to unlock the triggers of MS more generally. Then once you’ve got the triggers, you can try and do something about the actual condition.
Sharlene Brown:
It’s interesting, isn’t it? Yeah. Look, I know for myself when I was diagnosed, I was working too hard and pushing myself too hard. We have a bit of a theme going on there with us ladies. But then what I did was upon being diagnosed, I had quite a radical dietary change. I swear, obviously with the disease modifying drugs, put you back into remission. I had quite active disease. It took probably a good 12 months to bring that under control. Touch wood, the only other time I’ve ever had a bit of a hiccup was probably about eight years ago during a very stressful situation. Stress for me is a big one.
Diet. I think Ebony may have touched on it too, just trying to be a bit mindful, just trying to pull myself back, listen to my body. What’s happening? Am I uncomfortable? Do I need to take some time out? Pulling myself out of social situations or chronically stressful situations, I think, exacerbates any ill health that anyone might have. That’s how I’ve learned to deal with it.
But what about you, Lily? With your job at the moment, and you are living away from home, are you finding your stress levels waxing and waning or you’re completely loving the new life? How are you going to cope with that change being in New York?
Lily Law:
Yeah, absolutely. Sharlene, I think you spoke to this earlier, that during your diagnosis, you were full into the private law sector doing the billables. That’s really where I’m looking to pivot at the moment. It’s slightly daunting, considering, “Okay, how can I do this while knowing my limits and while understanding what’s possible?”
If I’m honest, I found the most daunting aspect about moving, purely being away from family, knowing that if I was hospitalised, or if I had an episode, there was no one to call. Every medical form will ask you to put an emergency contact. I couldn’t put one in. That was at least someone that wasn’t at work. That was certainly a challenge.
I think, look, it was a new country, all of the stresses that come along with that. But for me, I’ve found the ability to stay in touch with medical professionals, and family back home is a really great way to manage the stress of my condition, and just focus on getting the work done while knowing that my health is safe and secure, and I have the support that I need for it.
Sharlene Brown:
Yeah, being happy and healthy. If following your dreams to work in New York and doing what you’re doing is one of your dreams, then you’ve got to tick that box. You’ve got to do it. You’ll find what groove is right for you. I think that comes with time, comes with experience, and you’ll find it.
But like you say, having someone on the end of the phone if you need them is going to be incredibly important for you as you navigate the next few years in particular.
Lily Law:
Yeah, absolutely.
Sharlene Brown:
Which is good. Yeah.
Okay. Women’s Health Week is the biggest week in Australia, we think, dedicated to good health, and wellbeing for women, girls, and gender diverse people. This year’s theme is Your Voice, Your Choice. One of the daily topics which caught our eye was ‘Courageous Conversations’. Now Ebony, can you share with the rest of our listeners some of the support options that are available for people who are newly diagnosed with MS?
Ebony Moffat:
Yeah, absolutely. One of the first things that I did when I was diagnosed was go on Facebook and look for Facebook groups. There are so many great Facebook groups out there that you can find to connect with people and share experiences. But for me, I contacted my local Member Organisation, which is MS Plus. They’ve got access to an MS nurse who you can chat to, if you have symptoms that you’re concerned about, just to have a professional talk to you, and tell you what ways you can approach those symptoms, I think is really helpful.
I’m trying to think what else. Oh, I’ve found it’s like an online forum, and recently an app called Shift.ms which is an app. Yeah. It’s just like you post your thoughts and feelings for people with MS, obviously. You share like, “Hey, I’m having these symptoms. I’m not really sure about them. What have you guys done?” Diet and exercise. You’re asking people with MS about their experiences with trying different things in their lives, and lifestyle changes. I found that really, really helpful, just to talk to people in the community internationally.
Yeah. Meeting up with people in person as well. I’ve got a regular group that I meet up with every couple of months to have a coffee, talk about life, and all of those things. I think, yeah, it can be a bit daunting to meet new people, especially when you’re talking about something that you might not be fully comfortable talking about even with your family, and friends. But sometimes it’s about leaning into that discomfort and putting yourself out there.
Sharlene Brown:
Yeah. Sometimes I think using the anonymous groups is good, too, because you don’t have to eyeball them every day. You can actually reach out. That’s where those online peer groups can be really useful. What about you, Lilian? Have you had a similar experience?
Lily Law:
Yeah, absolutely. I think one thing I might point out in the front foot by way of this idea of courageous conversations, it pulls through a lot of what we’ve discussed. I would think that a lot of people, whether it’s with MS, or another chronic or complicated illness, would be very hesitant or would never even have thought that the conversations they have on a daily basis could be courageous. I think it’s a really good opportunity for reflection.
In the 12 months that I was diagnosed, six months of that was in Australia, six months has been in the States. Now most of that time has been in the US now that I’ve ticked over to 13 months since diagnosis. I found a lot of the tools that I found helpful when I was first diagnosed has applied here, navigating a new health system, and things like that, using education and information to build that confidence, and lead those more courageous conversations.
I guess even, again, the idea of going into a doctor’s office can be so daunting. Putting yourself out there, like Ebony said, can be so daunting, especially when it’s our health. It’s something that feels so personal, and very vulnerable as well. Certainly, on the doctor’s front, because very often, we’re confronted with doctors again, almost always twice my age if not more, people with lots of fancy degrees behind them, and with education that I couldn’t fathom at my age, certainly.
It’s just even going in; I’ve always used notebooks. I’ve always tried to have a friend or family member on the phone or present with me in appointments. That’s not possible now, but it’s the idea of me keeping my little bible of my health and having that with me almost as a backing to push me to ask the questions that I need to, to know that if I have another episode, and I’m at the GP clinic, that they call me an ambulance. Or knowing a little bit better if a doctor tries to make an assumption about your health, because I think maybe on the front foot of courageous conversations especially, and Ebony’s focus was certainly on the social aspects, feeling empowered by this wonderful MS community. But on the medical side, even using education as a way to feel empowered as your own best health advocate, I find is really, really great.
When navigating a new health system as well, that was really challenging. But again, leaning on resources, knowing that I know my health best, and that this doctor’s trying to fill in the gaps that I can ask more questions, and going into appointments, knowing what I want from the doctor instead of waiting for them to tell me what I need has been really, really helpful.
Sharlene Brown:
Yeah. Being a bit of an advocate for yourself, and you’d need to be an advocate for your own health, I think that is hugely important. I know I have had to move a couple of GPs because I didn’t feel they actually understood what was going on.
But there are some people, look, I’m in Tasmania, so I’m on the other end of the earth from where you are at the moment, Lilian, and our healthcare system is in desperate need of a band-aid, obviously. But how are you finding healthcare in the US versus Australia?
Lily Law:
Yeah, I think it’s a very hot topic in Australia. Before I moved, before I had the confidence to come over, I needed to have some pretty big conversations with the people around me, including my medical professionals, my specialists, to see if it was even something that was possible.
I had been diagnosed for five months by the time I got the job offer that led me here to New York City to work at the UN. I didn’t even know that it was going to be possible, because I was so new to treatment, so new to healthcare when I moved to the States. Yeah, back home, I think we all think of the State’s healthcare is automatically really, really terrible. It’s quite renowned.
I was certainly really fortunate to have private health insurance because of my employment, which is really a make or break here. I think that’s probably the most unfortunate thing. There’s lots of things to navigate there. Even being at the mercy of your health insurance a little bit more, I was told that while my doctor recommended a certain treatment, which I’ve recently started, it was at the end of the day up to my insurance, whether or not it would be covered regardless of the opinion of my specialists, which was really confronting.
But I would say, “Isn’t it backwards?” I would say though, Sharlene, on the flip side, while it’s not all doom and gloom. I think one thing I’ve noticed over here is a lot of the doctors have been world renowned, really, really leading in their fields. My neurologists have been fantastic. When I first sat down with my neurologist, I found out that he was funnily enough on the team that developed the medication that I’d been on since I was diagnosed. He was able to have a really great chat about that.
I think, of course, there’s a lot of nuance. There’s a lot of complexity and things that just don’t work right. But I think the opportunity to be around some really helpful specialists, even some people that could answer questions that I didn’t know I needed answers to, and giving a bit more certainty, I think all we want when we’re diagnosed with a complex condition is certainty, when often we can’t have any. A little bit of that has been really, really nice, even amongst all of the chaos of health insurance here in the States.
Sharlene Brown:
Yeah, true. Thank you. Julia, we’ve talked about some of the clues behind why women are diagnosed with MS more than men. Can we talk about some of the research priorities for women that we can focus on?
Julia Morahan:
Absolutely. I’m really pleased to be able to talk about this topic today, because we have recently had a bit of an international consensus, particularly around what are the research gaps for women living with MS. I think we’ve discussed that there are more women living with MS. It’s a very important topic, but we have found that for whatever reason, the actual research into women’s specific issues around MS has been something that has been lacking. Really pleased to see a consensus paper published earlier this year, really looking at these topics.
I think we know quite a bit about pregnancy, and MS. That makes sense because we know that women are often diagnosed in their childbearing years, younger, 20 to 40. We do know quite a lot about pregnancy in MS, and also the effect of having children on MS. But when we had a look at the landscape overall at an international level, we found that there’s actually really quite a lack of research into menopause, and perimenopause, and the effect of those stages on MS. When we think back to really, we are thinking there’s a bit of a hormonal component here, the fact that we really don’t know what’s going to happen at the other end of the spectrum, when the hormones are also changing with women living with MS, is really, really something that we’d like to think about.
We’ve also found that there wasn’t a lot of focus on sexual intimacy for women living with MS. Lots of issues around sexual health that come with MS, not always openly talked about on all sides of the equation. Low desire, changes to physical function, that kind of stuff. But really something that needs to be focused on, and focused on, I guess, in a “gender-specific” inverted commas way.
Then also other things like the effects of the disease modifying therapies on risks of gynecological cancer, that kind of thing. What are the knock-on effects, long-term effects of taking these medications or living with MS on those diseases that are specific to women? It might be a medical research thing more broadly, but particularly in MS, there are these really important questions that are related to women that are yet to be answered.
Very pleased that this first piece of work has been done. MS Australia and other MS organisations around the world at an international level are really trying to shine a spotlight on this now and push forward to try and get some answers.
Sharlene Brown:
That’s fabulous. I think also as a female of a certain age, too, I want to be represented by that people who understand what we’re going through, which is why it’s so important to get involved, too, if people can. Having a Head of Research here, Julia Morahan as a female, I think is incredible. It gives a lot of comfort for people who are being diagnosed. That there are strong females in these roles who are helping to uncover some of the secrets or the Pandora’s box of what is behind MS generally.
Thank you for all the work you do, Julia, in that space. We know that everyone is affected by MS differently. We’ve heard. Obviously, there’s a bit of a correlation here between optic neuritis seems to be quite common in a lot of people, when they’re first diagnosed, and we are not quite sure why. But what can we do to, I guess, help manage the impact of MS on our lives daily?
Julia Morahan:
It’s a great question. I think we’ve talked a little bit about strategies that Ebony, Lilian, and you, Sharlene have used on a daily basis. I think it will be slightly different for everybody.
I’ll talk about the proper messaging in a minute, but I think it’s about listening to your body, making sure that you are responding, giving your body that chance to recover when needed, and pushing yourself, but pushing yourself in a sensible way. I say that with loveliness. But there are some very sensible things that you should be doing hopefully, if you’re living with MS generally, but particularly women.
We always say, “Don’t smoke. Please don’t smoke.” It increases your risk of MS, but it also increases your chance of having a really bad outcome with your MS. We know it also contributes to relapses, and disability accumulation. If you are a person that smokes and has MS, it’s never too late to quit.
I think we come across this idea that it’s like, “Oh, I’ve already got MS. It’s something that is part of my life.” Please, please, please try as hard as you can to quit. There are lots of resources out there. It should make a big difference to the course of your MS as well.
Stay active. We’ve talked, too, a lot about exercise. I think this has both physical, and psychological benefits for a lot of women. If you can as much as you can or manage on a single day, you don’t have to be dead lifting. I’ve never dead lifted a thing, Lilian. But do as much as you can, try, and be consistent in that. That’s amazing.
Eat healthily. Sharlene had a really great outcome with thinking about her nutrition, her diet, and continues to do that over the course of her MS. We hear that a lot. Try to eat as well as you can.
Sleep, also really important. We hear all of the things. I personally read all of the things to try and improve my sleep. Sleep is huge, particularly when you have a busy life, particularly when you might have fatigue-related symptoms. I think one of the things that is always reflected back to me when I’m talking to people with lived experience of MS is the uncertainty.
I feel as myself, Sharlene, that I would be banking sleep. This is just my opinion. Also, a parent of small children, if you’ve got a chance, bank some sleep. But generally, just try and make sure that you get some good sleep. Then the other thing is the general health message. We know that conditions other than MS, when you’re living with MS can also affect your MS, if you’re trying to live with multiple things.
As people age, this is absolutely going to become something that is more and more common. The effect of other conditions on your MS is real. I think there’s a bit of confusion also completely reasonably, that people living with MS will think, “Oh, is that the MS?” Or “That must be the MS.” Sometimes, it’s not. It’s kind of the same as the diagnosis advice, which is, “Just go get it checked because it might be the MS, but it might not be.”
MS is so variable that sometimes it’s hard to tell. Try to keep an eye on everything, try and act on it in a timely way.
Sharlene Brown:
I think you just hit something on the head there. I remember a GP saying to me, “Just because you’ve got MS doesn’t mean you can’t get other things.” I was like, “Oh, the cheek of it. How can I? No, I’ve got mine. That’s enough. Thank you.”
I was like, “Oh, no.” It was just like, that’s not fair. It was very true. I think though that it was very true. I’ve got people who I hang out with, who I socialise with, and all, who’ve got all different types of things going on. Everyone’s got one thing going on, and apparently we can have more than one. It’s very true. As we get older, too, things start to break down. We’ll become a little less robust. I think we need to be mindful of that.
I’ve been asked to talk a little bit about MS, and women’s health generally. I’ll just tell you a little bit about my personal journey. I recognise now at the age of 51, that I had symptoms probably back in the early 20s, if not even earlier. It took me to 29 to be diagnosed.
I did a lot of ignoring. It’s just the stress of working, studying, and everything else going on in my life, to actually come to this stage. I ignored my symptoms because, again, I thought I was just working too hard, but I absolutely loved it. There can’t be anything wrong with working too hard, can there? The body went, “Actually, if you don’t take notice, we’re just; got to break down.”
I went numb from the waist down. I had blurry eyesight. I was walking to work half an hour each way with legs that felt like I had sandbags on them. But I’m like, “Oh, that’s okay. Just because I worked harder at touch footy last night.” Crazy stuff now in retrospect. But leading to the diagnosis of MS, which for me, I had one person who I was aware of who had MS, and she was much older than me. She did not have access to disease modifying therapies. Her outcome was not positive.
Naturally, my mind went straight to that. I was like, “I’ve just done all this study. I’ve just got myself ready. I’ve just gone to start to enjoy my career.” I was floored. I was really frightened by all that. But then at the time, I was in WA, and I had the fabulous WA society who came in, and basically just lifted me up. I had an MS nurse allocated to me, and she got me through those first few weeks of learning how to self-inject, one of the older drugs, which wasn’t exactly wonderful.
But here I am, like I say, working full-time, and being able to live a full life. I think everyone’s diagnosis is different. There is some correlations between what we’re talking about with the optic neuritis. I haven’t had optic neuritis that I’m aware of. She says, because I probably ignored it in my younger days if I did. Put it down to reading too much because I was a law student, for goodness sakes.
But it’s interesting how sometimes if we are not taught to listen to our bodies properly, we just ignore the symptoms. Maybe, we weren’t being listened to, either by GPs. I think Lilian touched on that a little bit, as to, “We need to be advocates for ourselves. We also need to stand up, and not be afraid to say, “Actually, I’m not happy with that course of treatment, or I’m going to actually ask some more questions.” We have done that. It has worked really well.
As a woman, I want to see us being able to advocate for ourselves more. I want us to feel more secure in being able to stand up and be a voice. Also, to have choices. I guess a bit like the theme of this year’s Women’s Health Week is for what we want to see studied in MS research. I’m a direct result of the great disease modifying therapies. I did not think I’d be here this time now, having worked at a high level for so long. I see myself as a success story.
I have a cousin who has MS, who got it well after me, who’s in a completely different situation. It is very unique, the way that it affects people. We don’t know enough about it. We want to keep, obviously, studying, and research is so incredibly important for that to occur.
Look, I just think if Ebony or Lilian, do you have anything you want to close off on, and how this MS diagnosis has affected you as a woman? Feel free to jump in.
Ebony Moffat:
Yeah, I think for me, honestly, when I was diagnosed as much of a stressful time as it was for me, in that situation, and in my experience having MS, and like you said, having to advocate for yourself as a patient, I think it is difficult, it’s scary, and it sucks to have to feel like you have to really push to get the answers that you need.
But I think ultimately, it’s so empowering to have that moment of realisation that you are the expert of your own body. You might not know all of the scientific terms for everything, but you know how it feels to be in your body. You have the right, as a person, as a woman to share that with your doctor, and push for the results that you need. If you don’t find something that you’re happy with that healthcare professional, onto the next one.
Sometimes, it does take a bit of shopping around, but you can’t put any value on what it means to have the right healthcare team, really.
Sharlene Brown:
I agree. If someone doesn’t fit your needs, jog on, find the next one. It is just keep going. What about you, Lilian?
Lily Law:
Look, I completely agree with everything Ebony said. You really can’t put a price on finding the right medical care for you. But I suppose, for me initially, what MS really impacted mainly, again, besides all that goes with it, with treatment, it was my confidence. But I think in my journey since then, is I’ve learnt a lot more about what I actually can do, what I’m capable of, and what I can overcome. Again, learning to be the best advocate for yourself in health is really a great way to translate that professionally, personally.
Once you get that skill underway you can be a far more confident individual. It’s been a really tremendous lesson for me. It’s something that I hope I continue to do.
Sharlene Brown:
I am confident that you’ll still continue to do amazing things, because don’t forget, the brain is amazingly versatile. It’ll find a way. With us stubborn people behind it, it will find a way to get through.
Look, I just wanted to say, MS Australia obviously is the leading organisation in the fight against MS. It plays a vital role in funding groundbreaking research, and providing resources for women affected by the disease in Australia. There’s over 33,000 people diagnosed with MS in this country. It affects more women than men. Obviously, three times more women than men. The disparity highlights the need for greater awareness, improved support systems for these women, and drives our ongoing commitment to addressing these challenges.
Early diagnosis, as Julia has said, and effective health management can significantly impact the trajectory of MS, offering hope, and ensuring better, longer-term outcomes, and quality of life. For women living with MS, the first step towards empowerment is knowledge. Share your knowledge. Reach out to peer groups. MS Australia offers comprehensive and relevant information about that, and lifestyle management tips.
I really think that with this knowledge, with carers, friends, family, and social connection is imperative to a good outcome, that you can make really good, informed decisions about your health and wellbeing. It is unpredictable. It can be, for some, debilitating. It can affect women with a wide range of physical, emotional, and cognitive symptoms that can range from fatigue, pain, mobility changes, to mood swings, and memory difficulties.
Given that MS is often diagnosed in young adulthood, it can dramatically impact a woman’s life, career, and relationships. Just as you get to the stage where you’re finishing your degree, obviously, Lilian, and can throw you for a sixer, but you’ll get back up again.
Find your support networks. Talk to them. Work with your healthcare team to make sure that you can manage it, and potentially treat it where possible.
Thank you so much to our guests today, helping us mark Women’s Health Week 2024. To Lily, Ebony, and Dr. Julia Morahan, you rock! If you want any more information, listeners, please go to msaustralia.org.au. Thank you very much.
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.
