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.
Julia Morahan:
Hi, I’m Julia Morahan. Welcome. This week on The Raw Nerve, we are marking National Pain Week.
Pain is one of the challenging invisible symptoms of MS. It can be chronic, debilitating and affect your daily life. Due to its invisibility, others may need help to understand your pain, learn what makes it better or worse, and what they can do to help.
Tell your family, friends, carer and or coworkers about your pain, so that they can understand what you’re going through. It’s important to assess whether any pain is caused by your MS or other reasons.
With the right information and support, pain can be minimized or managed effectively to maintain a healthy and active lifestyle. If you are experiencing pain, talk to your healthcare team about ways to manage and potentially treat it.
Thank you to our guests today, to Chronic Pain Australia Chair, Nicolette Ellis, for talking to us about National Pain Week, to Deanna for sharing her connection to chronic pain and MS, and Dr Alice Saul for her insight into chronic pain and MS research.
If you want more information, please go to the MS Australia website symptom page and search on pain. Thank you.
We’re talking today to the Chair of Chronic Pain Australia, Nicolette Ellis, on the Week of National Pain for Australia.
This week is National Pain Week, Nicolette, can you tell us a little bit about your goals for this week?
Nicolette Ellis:
Yeah, so National Pain Week is our largest conversation about chronic pain in Australia, and chronic pain affects over 3.6 million Australians, and it’s the leading cause of disability. It affects, over 33,000 people experience multiple sclerosis as well, and secondary, most people with multiple sclerosis also experience pain.
Not only is it the leading cause of disability, it’s really expensive chronic pain, so it costs our economy more than cancer, diabetes and cardiovascular disease combined, and in 2050, I think it’s going to cost our economy at least $250 billion each year.
For National Pain Week, we really want to, we’ve been doing this for over 10 years, we’re getting lots more awareness, advocacy and also interest from federal government and other peak bodies and organizations, who really see this as a core issue, that we really need to change the way that people can access affordable care.
Our main goal this year, is to stop the bottlenecks that’s going to tertiary pain clinics. A lot of those people are what we classify as category three, who could be really well managed in primary care, in their localized area with their general practitioner.
There’s amazing models that have already been really tried and tested out there, well evidenced, where you can access an allied health team, a multidisciplinary team, which we say is the gold standard of chronic pain management, and access them within one month rather than three years, when you’re waiting for that tertiary care in that hospital pain clinic.
That is our core ask to government, is that through primary health networks that help to manage the primary care sector in their local region, that they receive core funding to specifically target chronic pain management in their local region, and really allow that, Australians getting access to early intervention and care for chronic pain management.
Julia Morahan:
You’re really asking for a change in the model of the way people who’ve had chronic pain are cared for in the community. Incredibly important as you have said, and very expensive, and on an individual level, incredibly debilitating for people trying to cope with some long-term issues and long-term pain.
For 2024, for National Pain Week, it has a specific theme. Do you want to talk a little bit about how that came about?
Nicolette Ellis:
Yeah, it actually came about from our National Pain Survey. We’ve been doing the National Pain Survey for almost 10 years now, and this is our largest survey into the lived experience of chronic pain.
This year, what we see time and time again, is that pain colors your world as well. It doesn’t just impact the experience of feeling pain every day, it impacts our ability to work, our relationships with others, having meaningful connections, simple things like picking up your children, and also of course, mental health is drastically impacted by chronic pain.
One of the things that continue to come through the National Pain Survey is this statement about pain changes, and I think it’s a nice, powerful and positive experience for people, and a name to put towards things that have really changed the way that they’ve been able to navigate and manage their chronic pain condition.
Whether that’s through a particular health professional, or that might’ve been just even through their loved ones, in getting validation and support, so recognizing those pain changes that have really influenced and helped support them in their journey.
Because living with pain is really challenging and it’s a difficult space to navigate, and I think what people are lacking is hope.
Hopefully Painchangers is a way that we can reframe things and give hope to people, and have that shared lived experience. Because what we see is most people learn how to manage their pain experience well, from other people with lived experience who have been through the same journey.
Julia Morahan:
Really picking up on the lived experience of chronic pain and being able to use other people’s experiences potentially, to improve your own or improve your own outcomes if you’re a person living with chronic pain.
Nicolette, as the Chair of Chronic Pain Australia, we’ve been talking to a lot of people about all of the different management techniques that people use for chronic pain.
In your position, do you want to talk a little bit about what those techniques are or whether you have any advice for somebody that was listening to this today and maybe is living with chronic pain, that doesn’t know where to start or what’s out there for them?
Nicolette Ellis:
Yeah, I don’t think it’s really well recognized, what is best practice in chronic pain management for the average person, let alone the average health professional as well.
There’s a lot of misinformation out there, and very much a focus on biological aspects of why you have this pain condition. Which, chronic pain is a biological, psychological and social condition, and then when you look at, this is backed by the National Pain Survey obviously, because we say that pain colors your entire world as an individual, because of the impact that chronic pain has to our ability to work, our mental health, our relationships, etc.
Everything is touched by chronic pain, for a lot of individuals, and it becomes this vicious cycle of, how do I get out of this space? Unfortunately, what we do see is a lot of people on this merry-go-round of either seeking a diagnosis, so at least three years it takes on average for people to get a diagnosis for their chronic pain condition, from what we see.
Then, from the respondents of the National Pain Survey, 10% don’t have a diagnosis for their chronic pain condition, which can be quite disheartening, to not put a name to why you’re experiencing this pain condition.
When we experience pain over more than a three to six month period, that’s when we say it’s become a chronic pain condition, and fundamentally there’s changes to our nervous system and our immune system, which allow amplification of pain signals.
I think this is a really important aspect that we should really be teaching around the neuroscience of chronic pain, and going back to what is best practice or what people should be looking for for chronic pain management is a multifaceted approach.
You might want to see multiple healthcare professionals, or you might get that from one healthcare professional who is quite good in chronic pain management, or pain coaches as well, is a common term that’s been used.
What I would be looking for, as someone who lives with chronic pain in that space, and interviewing that person to help you be supported with your chronic pain journey, is around, they should be doing an assessment of your whole history, how chronic pain is affecting your ability to be functional, work, the psychological impacts of it and the social impacts of that.
Have you been noticing that you’ve been reducing going out and seeing friends or connecting with other people? Because that’s a really important part that we don’t want to be stopped because of chronic pain, because that gives us our own helpful endogenous pain relieving agents that reduce pain signals as well.
They should be looking at that holistic approach to an individual, and that’s the first key thing that I would be doing when I’m interviewing someone who’s there to help me manage and navigate my chronic pain.
The next key part for me would be around goal setting, and goals of intent and very specific goals. I would frame them around your personal, vocational goals and your social goals, of what you want to achieve.
That might just be for a short period of three to six months, and have a timeframe around it, make them really realistic for you. Then I would be looking at, okay, let’s step out this plan a bit further, about how we’re going to achieve those goals.
It could be a goal about, I don’t know, weight management or just introducing some exercise back into your daily regime. It could be about a return to work plan.
There’s so many different ways that you could carve it through, and part of that plan really has to encapsulate good knowledge about, what is your pain condition, what are your contributors, and how can we help to support and reduce down, I guess, that overactivity of that nervous system that’s helping to amplify pain signals?
That’s where I would start, and then you might want to add in some health professionals who are experts in those particular areas, and do some research on your own to really navigate.
Because I think, where I see people who manage their chronic pain condition the most, they probably have more knowledge than the health professionals who are helping them manage their chronic pain condition as well.
Having that empowered knowledge is such a key aspect of chronic pain management.
Julia Morahan:
Yeah, I think too, in multiple sclerosis we talk a lot about, everybody’s journey being very different, and the constellation of symptoms that a person has is almost completely unique to them, and the uncertainty of those symptoms.
It just strikes me that chronic pain is very similar, so there’s a broad definition of this, more than three to six months, but everybody’s pain and the triggers for the pain and the types of pain are very unique.
Nicolette Ellis:
Absolutely, and everyone’s Painchanger is being different, from what we can see on our social media, and what people say to us as well.
It might’ve been easier for people with chronic pain to have a very clear roadmap of how you can live a better quality of life with chronic pain, but I guess it just talks to how individualized chronic pain is as a condition, and how complex it is as a condition. It would be lovely if we had a cure.
Julia Morahan:
Yes, absolutely. I wanted to also just ask you more generally about the work that you do with Chronic Pain Australia, it’s such an important organization and voice. Can you tell us a little bit more about Chronic Pain Australia?
Nicolette Ellis:
Chronic Pain Australia is a not-for-profit organization, and we solely represent consumers and their lived experience of chronic pain.
We do this as a, Chronic Pain Australia is really about advocacy of that consumer lived experience, and making sure that policies, the way the healthcare system is set up, is all thought about from the consumer lived experience.
The other components that we do, so we run the National Pain Survey, National Pain Week, we’ve got further events that are kicking off this year.
We’re very committed to children with chronic pain as well, so in September we’ll be running a campaign and advocacy about kids with pain, because a lot of people don’t understand or are even aware that children are, one in four to one in five children live with chronic pain too.
It’s not a condition that, I think it was always thought of, it just affects older people, but it certainly affects young people and particularly in our most productive years, between 25 to 65 years old.
Chronic Pain Australia is also really committed to supporting people who live with chronic pain in their local region. Fortunately we’ve had some funding from both Queensland Health and New South Wales Health, that allows us to provide support groups in the local regions.
In the next few weeks we’ll have an update to our website, which basically shows a map of where you can interact and get involved with those groups, if that’s something that you would like to do. It’s led by people with lived experience and all about the self-management of chronic pain and connecting with others who live with chronic pain.
Then, our phone line, Pain Link, will be relaunched at the end of August. Then, this is really to help people navigate the healthcare system with chronic pain, also, if they’re in distress, have someone to speak with who also understands deeply the chronic pain experience, and also around just simple education, self-management, understanding the latest neuroscience around chronic pain, and give that education to people who are seeking that support.
We particularly get a lot of phone calls from rural and remote areas, because we see that as a really core area of need for people living with chronic pain, and so hopefully it’s an access point for those people who might feel disconnected or isolated with their chronic pain experience.
A very busy, small organization, but we are very passionate about what we do. Our board is full of people with lived experience, and that’s one of the key things that we make sure is incorporated into our board of directors, is that they have lived experience with chronic pain, whether that’s living with the condition themselves or the caring for someone with chronic pain.
Julia Morahan:
It’s a fantastic organization, with such an important goal and a very long list of significant activities that we hope will make a difference to those people living with chronic pain, so keep an eye on the website and keep an eye out for the peer support groups and the phone line that will be coming back online, all amazing, helpful, practical things for people living with chronic pain.
I think, thank you so much Nicolette for your time today and I thank you. I hope National Pain Week allows you to shine the spotlight on chronic pain and those living and caring for those that live with chronic pain, and allows us to really make a difference for people living with chronic pain in 2024. Thanks so much.
Nicolette Ellis:
No, thank you for having me, and thanks to MS Australia for all of the amazing work that they do supporting people with multiple sclerosis.
Please get behind National Pain Week, we’ve got loads of free events that you can be involved with. It’s all on our website, which is chronicpainaustralia.org.au.
Julia Morahan:
Today we mark National Pain Week 2024, with an important subject area, chronic pain and MS. As our introductory guest, Nicolette Ellis, Chair of Chronic Pain Australia, explained, the focus of this year’s National Pain Week and Painchanger theme is on the lived experience of chronic pain.
For many people living with MS, pain is a constant. Pain covers a wide range of unpleasant physical sensations, but everyone, people living with or without multiple sclerosis, experiences it differently.
Pain is one of the less recognized common symptoms of MS, with an estimated two-thirds of people living with MS experiencing pain. Today we will hear about chronic pain and MS from someone with lived experience.
We will also talk to a specialist researcher who works in the chronic pain and MS space.
Deanna, you were diagnosed with MS 18 years ago, at the age of 17. Can you share with us some insight into your lived experience of pain and MS, also chronic pain?
Deanna Renee:
Yeah, so my journey with MS has been marked by various types of pain, both acute and chronic. My specific MS related pain includes painful spasms, which is often in my trunk area, I think also known as the MS hug.
I also deal with stabbing facial pain. I struggle to pronounce this, but I think it’s trigeminal neuralgia, maybe someone can jump in if that’s not correct. Along with, that I have migraines and eye pain, when I’ve had episodes of optic neuritis on top of these MS pain issues.
My chronic pain comes from my pelvic pain as well. It’s expected to be potentially due to my endometriosis, but there is a possibility that it could be neuropathic pain from my MS, so we are still trying to work that one out today.
Julia Morahan:
How long have you experienced chronic pain, and can you tell us a little bit about what it feels like and how it changes from day-to-day?
Deanna Renee:
I think I’ve had chronic pain ever since my journey with MS. I wasn’t really sure what it was back then, since I was only 17. There wasn’t much information and I did really struggle with that diagnosis, as well as my family, we really didn’t really understand much about it.
It’s really a constant challenge to differentiate with my endometriosis. I was diagnosed 10 years after my MS diagnosis, with endometriosis, the source of the pain, which I feel really does overlap and intensify each other, so it’s quite hard to see where one starts and one begins.
With the MS pain, I don’t think it’s just also physical sensations, it also takes quite a mental and emotional toll on my life. The pain varies from day-to-day, some days it could be dull, a persistent ache, while other days can be sharp, debilitating, stabbing.
I think the unpredictability of the pain is also one of the hardest aspects to manage, as it affects my ability to plan and participate in my daily life.
Julia Morahan:
Yeah, that makes perfect sense. Dr. Alice Saul is with us to talk a little bit about the scientific aspects of pain in MS. Alice, can you tell us what is chronic pain, exactly?
Alice Saul:
Chronic pain is a pain that lasts beyond normal healing time, so after an injury or illness, generally three to six months.
I guess it is pretty common, in MS it can affect anywhere between 28 to 92% of people with MS. I understand that’s quite a large range, it’s hard to give exact percentages. As researchers, we are quite cautious about comparing studies, different studies that are a bit too different in methodologies.
Why it’s such a common symptom? We think it’s more so due to the underlying biological mechanisms of pain. They’re yet to be fully understood, but what we think are, that different types of pains in MS are thought to be caused by the disease processes of MS itself, so that’s generally why they’re so common, we think.
Examples of this could be lesion formation in certain parts of the central nervous system, so either in your brain or your spinal cord, but it also could arise from tissue damage from irregular movements or different postures, etc.
I guess, as a result of this, it means that pain can manifest anywhere in the body.
Julia Morahan:
Why do you think the research into chronic pain is so important for our sector?
Alice Saul:
Yeah, so research into chronic pain is important, because it affects so many people with MS.
A previous study from our team, found that feelings of pain, alongside feelings of depression and walking difficulties were the MS symptoms that had the greatest impact on quality of life.
Now, the goal for almost everyone in the MS sector is to improve quality of life for those living with MS, and so that makes pain research pretty important in my opinion.
Julia Morahan:
Yeah, absolutely. I think the numbers of people and also just the level of debilitation from the chronic pain means it really needs to be a research priority for us as the workers in the MS field.
Can you talk to me a little bit about the current evidence and what we do know specifically about chronic pain in MS, and how that might be a bit different to chronic pain in other diseases?
Alice Saul:
Absolutely. Look, as I mentioned, unfortunately pain is a pretty common challenge for those of us with MS, and there’s still a lot we just don’t understand about it.
We’re uncertain about how MS related pain changes over time, and that could be both in the short and the long-term of the disease course, and we are still a little unsure of how it connects with other MS symptoms.
What we do know and what we’re finding out more now, is that there are multiple different types of pain that someone with MS can experience. We know that there’s around nine different types or potentially 10, if you count musculoskeletal pain.
Examples of this list could include trigeminal neuralgia, which Deanna mentioned, which is an intermittent, often severe, repetitive, a light sharp pain to one side of the face. Optic neuritis could be another example in this list, and that’s an aching or throbbing pain, it generally occurs after movement with the eyes.
What we’re finding in our own work, is that people can experience several different types of these pains at once. In previous literature we’ve really focused on the percentage of occurrence or the prevalence of these pain types, but the literature is still pretty limited as to knowing the nitty gritty issue behind these pain types.
I guess the duration of which they’re experienced or the impact and severity, how much it interferes with the different aspects of daily lives.
I think there’s more work to be done in terms of the triggers of these pain types as well, and we’re not entirely sure how they cluster together in occurrence.
It’s having this lack of information, and the fact that not everyone’s MS journey is the same, it can make pain pretty difficult to manage and research effective treatments.
Julia Morahan:
Deanna, one of the aims of National Pain Week is to reduce the social and other barriers related to living with and managing chronic pain. Would you be comfortable discussing social or other barriers that you have faced, and potentially how you were able to overcome them?
Deanna Renee:
Yeah, of course. Living with chronic pain has brought numerous social and other barriers for me. One of the biggest challenges I think is the invisibility of these conditions. Since I often don’t look sick, not many people understand the severity or the reality of pain, leading to a lot of common misconceptions, lack of empathy, and sometimes some skepticism about my symptoms.
I think, socially the invisibility makes it hard to maintain relationships, friends and family might not grasp exactly why I have to cancel plans last minute or why I might not participate in particular activities that seem really simple for others.
The feelings of misunderstanding can lead to feelings of isolation or loneliness in myself. To overcome some of the barriers, I found that open communication has been really key for me, talking about my condition and the impact on my life has helped build understanding and support.
I do share a lot of my experiences through my Instagram account, and being very open about my journey. I’ve connected with others facing similar challenges, and I’ve created a community of support and solidarity.
Julia Morahan:
Yeah, thank you Deanna. You have been very honest publicly, about your lived experience of chronic pain plus pain and MS. Can you share with a little bit about your MS journey, and in particular your experience of engaging with others on social media and elsewhere, who likewise experience chronic pain and also pain in MS?
Deanna Renee:
Yeah, I think engaging with others on social media has been really rewarding for me and quite eyeopening. Sharing my journey with MS or chronic pain on my Instagram account allowed me to connect with a community of people who do really understand what I’m going through.
It was comforting to know that I wasn’t really alone, that there are so many stories out there, of other people going through similar struggles. It really gave me a feeling of belonging with a community.
I think, through the connections I was able to develop my own set of coping strategies and receive support and raise awareness about the reality of living with chronic illnesses and chronic pain.
One of the other services that I have used in the past was, one of the things that helped, I should say, was the appropriate healthcare and support services.
I do use the NDIS services, which has been quite instrumental in providing the supports I needed. I have a great team of allied health providers. I see a psychologist, I do hydrotherapy, physio, I’ve done a lot of things to keep my pain and my disability in check, I should say, as best as I can.
I think also, engaging on social media, I’ve been able to … Sorry, engaging in social media has given me quite a lot of strength and personal motivation to keep doing what I’m doing.
It is really great to get that positive feedback and see others that are still doing their thing, despite living with disability and chronic pain that’s impacting aspects of their lives.
Julia Morahan:
It’s a little bit about making the invisible visible I guess, but then also sharing your story and hearing the story of others who are able to still live well with pain, and find ways of managing it and sharing that in a group, so that you’re not isolated and separated, and being able to make that story resonate with people who potentially don’t have an experience of ongoing chronic pain, they don’t really understand what it is.
That’s amazing. Okay, so Alice, so we would love to hear your perspective as a research expert. Can you talk to me a little bit about current evidence on management of chronic pain for people living with MS?
We know that everybody experiences pain differently, and we’ve talked a little bit about, there are multiple different types of pain and people might experience more than one at a time, but what’s out there in terms of management at the moment, for chronic pain in MS?
Alice Saul:
We have quite a lot of different options actually, in terms to manage pain, whether it be medication or other treatments and strategies such as physio or acupuncture.
Although we often treat pain in MS, or manage pain in MS, there’s quite a significant number of people with MS that have reported that our current treatments don’t always work so well for them, and some have reported that, in some people they result in quite low levels of relief.
It can be challenging to determine which treatments in the current literature are most effective for the different types of pain that those of us with MS experience, and that’s because we know that people tend to have multiple different types of pain at once.
I think this complexity has been highlighted in recent clinical trials. In a lot of previous trials, the kind of pain was unspecified.
Some specified pain, certain pain types, in terms of when we’re evaluating effective treatments, but when the pain is unspecified, it can lead or it may lead to uncertain or conflicting findings about different treatments being highly effective for certain pain types.
The reason that they’re unspecified is, it’s partly due to the fact that we’re learning so much more about the fact that there are many different types of pain in MS, and I think once we have this greater understanding of these pain types, it may be easier to design these trials and it may lead to stronger evidence of different effective treatments for specific types of pain.
Julia Morahan:
Yeah, that makes sense. Deanna, you mentioned a little bit about this before, but how do you manage your pain? Given that you mentioned there are several different types of pain happening to you at any given point, what strategies have worked for you?
Deanna Renee:
I definitely take a multifaceted approach these days. I have a lot of support, so I see a pain specialist who helps tailor a specific pain management plan for me.
I do a lot of different types of therapy with allied health providers, such as I see a physiotherapist, I see an osteopath, I do hydrotherapy. I’ve also engaged in neuro rehab over the years, when I have had a relapse with my MS, which has been really, really helpful.
Definitely psychological support has been really key. My experiences living with chronic pain really do impact my depression, so I see a psychologist quite often, just to talk about the emotional psychological impacts of having to deal with daily chronic pain.
NDIS, as I mentioned before, when I got that, that really was a game changer. I think that’s one of the themes for the Painchanger, a game changer for me. I was able to access these services and therapies without having to have financial stress around being able to access them, so that was amazing.
Then, a few of my own, obviously self-care strategies, just trying to be really gentle with yourself. I used to really bully myself when I couldn’t go out with my friends or keep up.
I really had to learn how to pace myself, especially from a young age, being diagnosed at 17, so that was tricky, so that’s been ongoing, just being gentle, and community support.
I do engage in several MS support groups. I’ve done that over the years. I have good strong friends and family that support me on maybe some of the lower days, who really do understand. I don’t have to always advocate and explain why I can’t come out or why it’s a bad pain day.
I think combining all these strategies, it really helps, effectively help me manage my pain and improve my quality of life as well.
Julia Morahan:
That’s so wonderful to hear, Deanna. I think you’ve captured so many different strategies in that list as well, but it also highlights, I think for me, and Alice as well, just the complexity of what you’re dealing with requires a multifaceted and complex response, and it includes everything from physical management all the way through to emotional management, because none of these things happen in isolation, so well done for getting everything organized.
Deanna Renee:
I should add that that’s taken 18 years to get to that sweet spot of knowing what I’m doing. At the start I had no idea.
Julia Morahan:
We’re still proud of you, that’s fine. No, yeah, no, yeah, we love to hear when people are getting on top of things. Yeah, because this is part of your life now and I think it is also that transition, as you said, as a 17-year-old being diagnosed with MS, transitioning into a different space where this management and complexity of life has come in, and having to deal with all of the pain and all of the emotions that come with that. Absolutely it’s a big achievement.
Okay, so Deanna, you and Alice have special links to MS Australia, and are much treasured.
Deanna, you are one of our national advocates and a recent member of our lived experience expert panel, which helps to advocate and raise awareness of MS.
Alice, you are a long time MS Australia funded researcher. Alice, would you be able to tell us a little bit about your Fellowship?
Alice Saul:
Absolutely, so my Fellowship revolves around understanding the different types of pain in MS. I’m utilizing data from a large MS Australia funded study that’s based in Australia, called the Australian MS Longitudinal Study. This study has followed over 2000 people living with MS since 2002, so it’s been running for a really long time.
I’m currently using one of the survey’s data to understand the various types of pain in MS, in terms of how frequently they occur, their severity of impact, the duration of which they’re experiencing, as we want to measure the predictability, of being able to forecast when these flare ups are going to occur.
I’m also exploring different management strategies, to identify their perceived effectiveness. This could be either medication treatments or strategies in overall pain, but also in the context of these individual pain types.
This research will touch on how pain connects with other symptoms as well. We’re looking at the moment at different pain triggers in terms of overall pain, but also too, looking into the various different types.
We’re also looking into the different fluctuations over time too, so it’s a three year project.
Julia Morahan:
Yeah, fantastic, and we’re really excited to be part of it, Alice, and very much looking forward to the results of your work, so thank you.
Deanna, you are also an artist, and I was looking at some of your works earlier this week, and it’s just incredible, so beautiful, you’re so gifted. How did you get involved in it?
Deanna Renee:
I was actually in hospital for pain management, and I thought it might be … They said, “Do some art therapy,” and I started doing it as a bit of a creative outlet, to cope with the challenges of living with MS and chronic pain.
I used my emotions to make medical imagery, like MRI’s, into something a little bit more colorful and beautiful to look at. They used to fill me with quite a lot of dread, to look at that black and white MRI, and try to find the lesions or whatnot.
I decided to transform them into very vibrant intricate art pieces with hidden details around the outside of MRI’s. I made them quite colorful, which I found really rewarding.
It’s very relaxing to actually do the circular artwork and just keep building on it, like a circle, that’s why I ended up choosing the name Circular Blooms because of the circles of love, obviously.
I did see on, for Chronic Pain Week, that one of their taglines is, Pain Colors Your World, which I thought is very, points to my art pieces, because I always say, “I like to be seen in color instead of being seen in black and white,” which is typically how you would see your MRI scan.
I think it just for me was transforming a shift, from viewing pain and illness as monochromatic, and making it more into a vibrant, exciting thing, where I say, it’s a bit like, Where is Waldo? You can find little hidden pieces, and bits and pieces, and the focus is more on the outside of the art than the inside.
I think it showcases for me, hope and resilience in adversity, so thank you.
Julia Morahan:
Yeah, no, I think too, that’s a very articulate way of putting it, and I think that’s what struck me when I was having a look at your work, Deanna, is that you have taken something that is quite flat, possibly quite frightening, and turned it into this beautiful colorful piece of work, that would potentially give people some hope, and understanding that there is more to them than those flat images.
As a person living with a disease, there’s lots of other aspects, and just absolutely lovely. On your Instagram profile, as you said, that’s @circularblooms, if anyone wants to have a look, they’re very lovely.
As a final question for both of our guests, is we want to take home message for people. What is the main thing that you would like to share about chronic pain and MS, if you had to put it into a snappy sentence? Maybe Alice, you could go first?
Alice Saul:
Yeah, that’s fine. I actually found this question quite hard to answer, and I may have decided in a couple of sentences, I’m sorry.
I guess the main thing I wanted to share about pain in MS, that it just varies widely in its nature and intensity. It can impact those of us with MS physically, emotionally, and socially.
I just thought it was important to share that, and to acknowledge that this pain is real and significant, even if it’s not always that visible to others.
Deanna Renee:
I would say that chronic pain in MS can be incredibly isolating and challenging, but I think it also reveals the immense capacity for resilience and growth and strength.
It’s crucial to remember while these conditions may shape our lives, they don’t define our potential or diminish our worth.
Advocating for ourself and connecting to others who understand our strategies, can transform our experiences into a powerful source of community and support.
Julia Morahan:
Yeah, so echoing what you both said, I think, well, I couldn’t agree more. As the Head of Research at MS Australia, I’ve been thinking about MS for a long time, as you can imagine, and pain as a research topic in MS wasn’t on the radar nearly as much 10 years ago.
I think, from my position, I can see that there’s been a lot more growth and awareness and interest, both clinically and from a research perspective in pain, which I think is hugely important and goes to the conversations that we frequently have with people living with MS and at MS Australia, about the invisibility of symptoms and trying to make those invisible pieces of MS visible, so that we can help ultimately help people and improve their outcomes.
I think we are on a trajectory that is going very well, and Alice is part of that research piece, but also to understand that there are people at the end of this that are trying to live their best lives, and it is our job to try and make it possible for them to do that, and that requires all of the multifaceted pieces.
Thank you so much, both of you for your time and your amazing insights. I’m very pleased to have you here.
Deanna Renee:
Thank you.
Alice Saul:
Thank you for having us.
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.
