MS management: It's not what you know, it's who you know

In this spirit of reconciliation, MS Plus acknowledges traditional custodians of the country throughout Australia and their connection to land, sea and the community. We pay our respects to elders past and present and extend that respect to Aboriginal and Torres Islander peoples of today.

Jodi: I am going to talk to you today about a subject that I feel incredibly passionate about. And from my 25 years of nursing, I have come to see that in MS management, it really does take a village of people. I sort of captioned that with, it's not what you know, it's who you know. And such an important. Because I found that not only people living with MS, people they had in their lives to be able to help them, but my job as a MS nurse was also to help people know who can be the best benefit to them as well too.

My name's Jodi. I am an MS nurse Practitioner. I'm now Executive Manager here at MS and I've been an MS Nurse for 25 years. Sometimes the things that we talk about can really touch a raw nerve. For many people, there's trauma associated with MS, the diagnosis of MS, how they live with MS. And we really want to acknowledge that and recognise that things that we raise and topics that we discuss can really touch more nerves in people and we really encourage people to reach out and talk about that if they need some more immediate support. Beyond Blue have some brilliant resources, Grief line, Lifeline and Plus connect if you need to give us a call as well too.

What I'll be covering today is why a village, why is it important, why is it it's not what you know it's who you know. Then we'll cover a little bit on how to gather your village and also navigating the changing roles and relationships once you have a diagnosis of MS, but also as things change in MS, which we know that during the course of MS, you can have daily changes. You can also have big changes in your life, which means that you need to look for the roles and relationships will change. A couple of the subtopics we'll cover as we're going through these three major areas is loneliness and social isolation, health system overview, practical concerns, and social support.

So, why a village? And why is Jodi Haartsen so passionate about this topic of gathering a village and making sure that you know people who can help you in the best way?

Well, the term it takes a village does originate from an African proverb which was about it's taking a village to raise a child and it's a common enough adage that we hear and mothers around the world and fathers around the world will tell you the importance of a village in how you raise a child. When we think about human adversity and raising children can be a blessing, but it also can be a human adversity, it really does strengthen us to have a village around us. And Hillary Clinton coined it well when she talked about it's taking a village, not just the primary geographical village any longer, but more about the networks of relationships and values that connect and bind us together.

As humans, we are herd animals. We need people around us. We are socially connected people. And if COVID taught us nothing, it taught us the value of the village and the importance of people around us and the consequences of not having a village around you. And so, I started thinking about this more and more and thought about all the people who I've provided support for with living with MS, which must be thousands now, over my years.

And What people really drew strength upon, what was really important to them and what was really sort of helped people feel a sense of control over their MS, feel like they could live well with their MS. And I came to see more and more that it was the people around them. It was the people who they brought into their village to help them navigate the disease right from diagnosis all the way through the life course of the disease. As I've mentioned, diversity occurs in a social context. An MS diagnosis does not occur to just a person alone. It occurs to the individual and the family and the community around them. And so, we constantly, we need to think about the fact that adversity can be challenged and managed with those around you as much as it impacts them in all different ways.

So, what creates a positive village environment? When we think about relates to what we need to create a positive sort of village environment for children, they're often very similar when we think about how we can create a positive village environment for someone who is suffering some adversity in their lives, and that's that their voices are heard. But there are multiple providers of care and support involved in their village.

There's a sense of shared responsibility. There's a sense of safety and safety is something I'm going to mention numerous times over this presentation because I think it's an essential part of any, and when you're thinking about your village feeling safe in your village, feeling safe in your friendships, in your healthcare practitioner relationships, in all those relationships that you have safety and trust are such essential ingredients to that.

But you have shared values, common sense of purpose and a set of practices and standards and rules. These are all things that when we think about raising a child, we can translate to also thinking about how we can actually purposefully build a village around us to help manage the MS.

So, the context of not having a village for people is a sense of social isolation. And more and more people with MS expressing to me feeling a sense of social isolation. And I think post COVID now we really understand what that looks like. And it is becoming more widespread, it is painful, and it is definitely harmful for our health. This picture and work is from the World Health Organization who very recently placed an enormous amount of influence and done a whole lot of work around social isolation and what impacts that has on people's physical and mental health, quality of life and longevity and we're learning more and more about that. And so, MS can be a very lonely disease and it's very easy to feel socially isolated for a whole lot of reasons.

But social isolation and loneliness are slightly different things. And if we look at the way even in that they impact people, again looking at some of the work that's done by the World Health Organization and even the Australian Institute of Health Economics have done some work on this as well too. If we look at social isolation, it's an objective thing, it's measurable by the number of people around you. You can have few or no social contacts. Social isolation is not necessarily linked to feelings and emotions and its causes are usually geographic, physical, or by choice. And we know that there are lots of reasons why people with MS can actually have this experience of social isolation, which is no people around them.

Loneliness is slightly different in that it's an emotional experience. You can feel lonely with having many, many people around you. It's usually associated with feelings of sadness, and it's a perception of the quality of the relationships around you. Both of those things, loneliness and social isolation, impact people's health significantly. And we are learning more and more the way that this impact is felt across mental health, psychological distress, life satisfaction, even general brain health, social isolation is being recognised more and more as an element of that. It's the opposite to not having a village around you, is to feel socially isolated and even though in a village you can sometimes feel lonely if you don't have that village working with you and for you. So that's what we're going to talk about.

In terms of the research, social connections that not only reduce isolation but also impact loneliness have certainly shown over and over again to demonstrate increased resilience for people, so reduced loneliness, reduced negative impacts, reduced the impact of negative personality traits. There's quite a lot of studies that look at negative personality traits and how they're influenced by having people around you and reduced. Increased conscientiousness and better outcomes overall. And I think it's important to remember that when you're thinking about the village and gathering your village, it is often the people who need the support find it hard to ask.

So, let's go back and think a little bit about MS and loneliness, and why this concept of having village people around you is so important. MS can make a person feel very lonely for lots of reasons. And these were just some of the reasons that I started thinking about. MS is very variable for people. So, most people told me that they didn't know what they were going to get every single day. They didn't know what morning it was going to be and that can be really lonely. If you just think I don't want to talk about this again in the morning, because I don't know how I'm going to feel today. And I feel alone in this disease because I don't know what my day is going to look like. It's unpredictable, not just unpredictable in some degree to the disease course, it's unpredictable day to day and that can make really result in people feeling lonely regardless of whether they've got social context or not. It's hard to describe. MS is hard to describe and when it's hard to describe a feeling like numbness and tingling, it can be so easy to just not talk about it and just not describe it because it's just too hard to describe and then look it's just I'm not winning in terms of this description and so I can't connect with people because I can't describe how I'm feeling.

MS is very fatiguing it can be exhausting and that can also result in loneliness just by itself not being able to go out and have those again those reduced social connections. MS can also make people around you feel really lonely and that's for very much the same reasons. It can feel lonely because it's variable day to day and unpredictable so almost for the same reasons except for the people around you I've just added can feel like a passenger I don't feel like they can fix it and they too can experience reduced social connections So it can also make that especially partners and close family also feel really lonely because of all similar reasons, not the same, but similar reasons.

Research has shown that it really can just take one quality connection. There's lots of different research studies on this, some say five, some say 20, but you know, studies have shown that social support can mediate the degree of resilience and loneliness that people experience.

So, what might be some of the signs that you can see in yourself? Or that you can see in others feeling lonely. So, what you might see is people withdrawing, or you might even see yourself avoiding or withdrawing from others to prevent a sense of rejection. You might feel like I'd love to catch up, but I don't want to put you out, soft request and not to burden others. People might sort of say that sort of language. Poor eye contact and withdrawn body language, such as going like this or, you know, arms across the back. They're sort of withdrawing body languages. And less engaged conversations at work. People can just be sitting and staring outside of their windows. I've got a lovely window there, I stare out the side there for joy, not for loneliness. But what you might hear yourself say, and what you might hear from others, if you're thinking about are they lonely, is no one understands me, I don't have anyone to turn to or talk to, I don't fit in, feel accepted or belong, I feel lost and empty, I don't feel like anyone's got my back, why don't people like me, what's wrong with me, you can't trust people, that's another one, and I think I'm just different. And they're sort of things that we can also have in our own internal dialogue if we're experiencing loneliness. So, it's certainly really important to look for signs, not only within others, but within yourself and say, am I feeling lonely? Cause this is something that I need to actively pursue and need to do something about getting a healthy village around me.

And Australia's recently started an ending loneliness campaign and there's so many resources available on that. So, I encourage anyone to look is feeling lonely to look up ending loneliness. com. au. It's a great resource, that's really working on making sure that we address the issues of loneliness, which is, you know, well known to be epidemic proportions.

Now what to do if you're feeling lonely. So, these are just some tips that I read again on Ending Loneliness Together. Remember that you're not alone. Set realistic expectations of what you can have in relationships. Join an interest group. Try volunteering. Volunteering is a great way to connect with someone because you're often very busy doing something else and so you can just have conversations on the side. But volunteering is a wonderful thing to do, it's giving, it's great for your health and wellbeing, and it's also a way to connect with people.

Nurture current relationships. How important is it just to reach out to someone? Even if you haven't heard from them for a while, just say, hey, how are you going? Let's catch up. What joy that can bring to your life to catch up with people who you haven't caught up with in a while and make you feel less alone in the world. And build on small talk. While small talk may seem insignificant, it gives people the opportunity to connect with you. One of the things I love about living in Melbourne, and New South Wales the same, a different football league. But in Melbourne, you know, if you've got a footy team, there's always something to talk about, there's always something to connect with people and I've found that I've really been able to, you know, I'm not really huge into footy, but I really love the fact it's a point of engagement for everybody I can talk to.

That's why it's important to have a village. You know, there's research that says that it's good for your health and wellbeing. But thinking about what the opposite is, of not having a village is the reason why I am so passionate about how important it is in the management of MS.

So, let's think about now being strategic and thinking about how you can gather your village around you. Sometimes it helps to put around some principles in your approach, to be quite reasonable about it and say, okay, what's important to me in my village? These are just some ideas of mine of what you might think in when you're thinking about that, but it's good to be strategic and it's good to sit back and to actually map what you want your village to look like. What does it need to be in it? And what are the principles? Because that way I can work out who's in and who's out of the village that's going to be important for me.

And as I said, the most important thing I believe is safety and trust and the two come together. But feeling unsafe in relationships is really going to make it hard to progress from there. We all know the friends who we feel safe to be ourselves with, and who we feel comfortable with and the people in our lives who give us that safety and give us that sense. It's so important and certainly even with your medical, with your GP, your neurologist, your MS nurse, if you're not feeling safe in that environment, then have a think about that because that may not be the best relationship for you. Because sometimes you've got to have really awkward conversations and really difficult conversations. And so, if you don't feel safe in that environment that can make those really hard to have. And so, it might take a while to find the right GP, physiotherapist, neurologist, MS nurse in your team. If you are thinking about, are they safe?

Are they strength based? Thinking about what our strengths are and how are people supporting our strengths and are they thinking about our strengths? And am I thinking about my strengths as I go together around my village? And that's a little bit about values and the importance of aligning with your values. Is it prevention focused? So, you know preventing problems before they happen. Are people in for the long haul? I'm taking this as a long-term approach, and I want to say that you know not everyone needs to be there for the long haul. But it's important to think about who do I need for the long haul and this is my long term approach to what I'm going to need.

But also, within that is, can it be fluid and agile? Can I change and can I shift within what I'm thinking about? Does it promote agency and empower me? Does my village allow my voice to be heard? Is there open communication and open mindedness? Am I hearing different perspectives? Because that's so important as well, too, to be able to take on board different perspectives to say, oh, I thought about that that way, but you presenting it this way is really important because I can see that there's another way of looking at that.

So, you might have your own principles in terms of how you think about what is going to be important to me when I think about gathering my village. So, in terms of making that map, we often start with health services when we're thinking about a village. I think a village is much more than health services. But I know it's important to lots of people, and we've talked about the GP, neurologist, MS nurses, but there's often a lot of other people in your health care team. And when you're thinking about your village and the bubble that is health care and support, it's really good to think about, going back to those principles and saying, is this person. Have they got the same values as me and are they aligned with what I'm thinking and honouring my personal stories?

Everyone's got a different way. Some people like doctors who are direct and tell them things and say this is what I think needs to happen. This is what other people want to be more collaborative and talking about it. And often if you think about your experiences in healthcare previously, you know, how have you wanted to engage with just a GP on a general visit? Are you happy with them to be direct and to tell you what to do and you're happy with that approach? And that aligns with the way that you value communication, and those things can make such a difference to how you engage with your healthcare service and that sense of safety and trust.

Here's some practical tips from me in terms of assembling healthcare teams. Think about trust, safety, and communication. Think about how accessible it is to you and that's just not you know around the corner because sometimes it could be around the corner but there's a whole lot of barriers to getting there in terms of parking and timing and how accessible is it to you especially the people that you're going to need regularly. GPs might be more regular for you than your neurologist but you only ever see six months so you have to travel a little bit further for that visit, that might be okay and acceptable to you because they're aligning with your values and they're honouring your personal story and your needs for what you need.

Also get your admin sorted. There's nothing worse than in terms of when you're working with healthcare teams. One day we'll have an amazing health record system that means everything's interconnected, but for now in Australia we haven't quite got that yet. So, I do encourage everyone to have a folder of health information. You can keep it in your car, and you can just have it in your back pocket so that whenever you're going for an appointment you can just take it in there, take it out there and have all the admin sorted so that when they say, when was your last MRI? You're not sitting there going, oh I forgot, hang on, we'll look into the system. I can't get into that system today, can't access the system today. Wait a minute, let me try and think about. So, it just goes round and round. So, the more you can take control of that, the better off your time will be with every healthcare professional because you will be in control of your own admin.

Trust your gut if it's wrong. If it's the wrong fish, in terms of your healthcare team, that can be emotionally exhausted, and second opinions are okay. And finding that right person is okay. Take the time you need, determine what you need and certainly do the appointment prep. It's really so valuable to think about what you're going to talk about and write them down on your phone, talk them into your phone. You know, the phone is now such an amazing tool that you can actually, you know, there's quite a few neurologists who are now happy for you to tape conversations with them. So, you can respectfully ask that of your team and say, can I tape a conversation, so I remember? And I've also written down some notes for you that are on my way to the appointment. I was thinking about what do I really need to talk about so that I can make sure that I make the most of this appointment.

Another thing that lots of people have asked me is how do you know if someone's a specialist? It's a really hard question. Lots of people say, can you put a list of specialists on your website? And I often say it's really hard because we don't even actually know when someone's a specialist because lots of people can say that they're a specialist but what is defined as a specialist is not necessarily what I would define as a specialist as well too. So, I came up with some tips about thinking, what is a healthcare specialist? So don't assume a healthcare specialist is just because your GP said so. You can ask for a list from your GP instead of just going with the one that they said so. Don't assume someone's a specialist just because Google says they're a specialist. Don't assume that they are a specialist because they are a good person. My mum always does that. It drives me crazy; she always says but they're so lovely, Jodi. I'm like, lovely doesn't make it the good doctor mum. There are many degrees and awards on their walls. That also doesn't mean that they're a specialist in MS, or any of the reasons that you might be seeing them. You might want to see a specialist in women's health. You might want to see a specialist in heart condition, not just about MS. Don't assume they're a specialist just because they speak with great authority, or just because you're paying a lot for it. MS specialists, in particular in Australia, do work collaboratively. It's a very tight community and in general when you have a group of specialists, they often want to work with each other. So unfortunately, in Victoria and in lots of parts of New South Wales, mostly they're metropolitan or there's more specialist neurologists now who are going out to more rural areas. And hopefully that will continue to happen a lot more.

Many highly MS specialists have published articles in the area of their specialization. And that's because they're often working collaboratively with people as well. They do have their specialty registered on their profile. So that's a little bit of good of Googling people do have that registered there. One of the things is that an MS specialist should be able to give you a good understanding of what the options are and help direct you around choices based on their experience. So, if you have someone say oh, you just choose, you want someone to be able to guide you based on my experience over the last 20 years, I think this would be a good option for you. And here's the things that I'm thinking about, how are you thinking about that? That sense of experience is really important. Also, confidently describing MS, the treatments and the likely outcomes. I always look for this in other areas, if I engage in healthcare professionals, I always ask them, and the more confident they are in explaining the treatments options and what the likely outcomes are in any area, you know that they've done this before and that they have been able to sort of talk you through it and familiar to them and this is their specialty. And they're also aware of other resources available for support for you if you need them. So, they're just some things to think about when you're thinking about wanting to see a specialist.

Susan Silk was the person who developed this ring concept when she was being treated for cancer. She was told by a friend who was visiting her that the illness is very difficult for us around you too. And her and her husband put together this concept that I really like, and that is the comfort in and dumping out, and how important it is that we that when you think about giving people comfort and support and nurturing, that the person with MS is the person in the centre here. And all the comfort needs to come in from one level directed into them. And important is the dumping out. So, they're allowed to tell their close friends and family. But redirecting that arrow to dump it back in on them can be really unhealthy when you're thinking about building a village. So, it's really good to encourage people to go outside of the next realm and say, if you need to just get that out off your chest and say oh, you know, this person today it's really challenging for me.

Go and speak to friends, family, or friends, and then go to communities or then go to health and community services as well too. I read that people that carers speak to the most about the burden and the significance of the things that they're going to is actually their GP. And that's really interesting. And my son also really highlighted that to me one day when I was talking to him about how his illness was impacting me. And he said, surely, you've got friends to talk about this with mum, I don't really want to hear this right now. And I thought oh it hurt a little bit, but it was so true. Because I wasn't putting in the comfort in for him. I was sort of turning it around and wanting comfort back from him, and he wasn't able to do that. So, it's just a good thing to think about when you're talking to someone, this concept of comfort in and dumping angst out.

I also talk a lot about the different types of support that you need. It's so easy as humans to want to create this one perfect person who's going to give us everything that we need. But if you can actually deliberately and intentionally say, alright these are the types of support that I'm going to need around me. I need someone to give me an emotional support. That's that person who's there when I cry and who gives me a hug and who's there when I need someone to just let out my emotions.

An instrumental support is that person who's practical. It's going to be there to mow the lawns, do the things that I need to do, cook me some meals. They're my instrumental support. Informational support is that person who says, I'm happy to look up information for you. That's what I'm really good at, and I'm happy to get the information that you need.

Companionship support is the person who you just hang out with. It just goes for a walk, and you don't need to talk about it and you can just hang out with them. The appraisal support is the person who is really good at getting the big picture and saying to you, hey, what about if you do this, that and the other and fitting that in.

Esteem support is your cheerleader. This is yay, go you, you've got this, I know that you can do this. That person is just so important in your life. Your network support is that person who knows everything, you know, that community networker. Seems to know everybody and somebody who knows somebody who knows somebody. They are such a valuable support for you. You know, where's the best MRI to go? Who's a good GP to go to? Who's a good exercise physiologist? There are some people who just really create networks really, really amazingly and it's good to have one of those in your village.

And also that person, that validation support. Everyone should be a bit of a validation supporter, but there can be someone who just, you know, when you engage with them, you're going to get that yeah, this is tough for you. And I'm not going to try and fix it and I'm not going to try and solve it. This is just tough for you.

Some people are more than one part of the support, but it's so useful to think about that's that person's role and they're really good at it in my life and I don't need them to be other things to be able to have that. That's why I need a village, so that I don't just have one person who's doing all of this. If you have one person in your life who can achieve all of this for you, then that's awesome. But for most people, that's a bit of a struggle.

So, in terms of activating your village, in terms of sort of how you can do that, weed and nurture. And at any times in your life, it's good to look around you and say, okay, thinking about me being strategic about the village around me, who needs to go and who's not working for whatever reason? It's usually a two-way street, you know, it's usually, it's just a relationship that doesn't work. But who do I really need to nurture because they're such a valuable part of my life and they perform one of these roles of support for me?

Help the ones who are providing direct help. That can be really useful as well too. Acknowledge the name and the role that they play. It's so good to say to someone, I really value the fact that you are the person who is my practical support. When I need someone there that could do something practical, I just value you so much for that.

Assign specific jobs to people can be another really good way of thinking about your village and sometimes when you match what the person's good at in terms of those different types of support that can be incredibly valuable. Organise a meal delivery or schedule or check in schedule. These are sorts of things that you can do to activate your village.

Village roles and changing relationships. The diagnosis of MS, there's a lot of loss associated with the diagnosis with MS. And that can come in waves of different loss, as MS changes, as you face different challenges in your life, those losses can come and go. And so, it's really important to acknowledge those loss and the losses in relationships. Not only just at the time of diagnosis, but as you go along. The loss is part of lots of people's lives. Loss and grief. But the more you're able to talk about it, the more you're able to sort of work through that when you're thinking about creating your people and who you can have in your village.

Kicking the elephant out of the room is one thing I've got from there's a website called Option B. That's Sheryl Sandberg, when her husband died all of a sudden, she wrote Option B, a website, and she wrote some resources with Adam Grant, who's a psychologist, about Option B. And they've got some fantastic resources available to manage grief and loss. And one of these was think about kicking the elephant out of the room. And I can't tell you how many times I felt like I was sitting opposite someone in clinic and there was two people and a massive elephant in the room that people weren't talking about. And that can be really scary. And it comes back to that sense of safety as well too and trust to be able to say now is the time that we have to be brave enough that I feel safe enough to kick the elephant out of the room. So that's something to think about when you are having difficult conversations.

What do I do right now when I'm in a difficult situation? How do I sort of work with my village right now when it's a difficult situation? And I just wanted to touch on an immediate resolution. So, if things are a bit tough for you right now, or if things are getting tough, these things that you can do for someone or someone can do for you right now, and that's sending a text, a simple text about it's unfair that you're going through this. It's okay not to be okay. Or it's just wanted to check up and say, hello to you.

Provide practical support. You know, that's such a gift to someone to be able to say, oh, I'm just going past the supermarket. Do you need some Cadburys? I'll drop it off at your house.

Respond on social media. You know, that's also one way that you can connect with people in the immediacy. Generally, I think not responding to everybody, but just a personal message to someone to say, hey if you need it, you can Message me offline and I'm there for you if you need it. Or, the other way, just connecting if you're a person who's living with MS. Let them, people know that you're there for the journey so that people are in it for the long haul. And that it's okay not to need anything right now, but I'll check in with you again next week.

Now there are people, and it maybe you, and it may be people in your village, who don't want to talk about it. So, this is a big thing and we're trying to connect with people and say I just don't want to talk about it. We're very good at it in Australia I think to just say let's not talk about this. So, these are just my tips about why people may not want to talk about it and also just you know my message really about that is to be patient. And so, there's a whole lot of reasons why people might want to talk about it and to understand those things are really important. To understand why people they may not feel trust or safety, they may have had bad experiences, they may not be ready to talk about it, they may be a super private person, they mean it for confident in explaining it. And so, it's really important to think about that and to be patient if someone doesn't want to talk about it. And acknowledge it's okay not to want to talk about it now, but I'll circle back with you, and we can talk about that if you want to if you want to talk about it anymore.

So, some practical tips about talking about it, because it's not just talking about MS, it's talking about hard things in life. That's a bit about taking the temperature of the room. Generally, you can get a vibe of whether it's a good day to talk about this or not a good day to talk about it. I can't tell the many hundreds of times I've read the room wrong and started a conversation and then thought, no, this was not right for time, reverse, reverse, reverse to bring up this conversation with this person.

Name the elephant, name the problem that can take an enormous amount of courage to do that, and to thinking about the right words to do it. Don't try and fix it and avoid tips and tricks. There's nothing more irritating to people than having them trying to fix it all the time and saying, you know, have you heard about how to do this X, Y, Z and this is it? And you can say I've sort of heard about that. Would you be interested in it? But it can sort of be a little bit confronting for people if they have the fix it. So, you want to fix your problems all the time.

Listen and validate people's feelings. You don't have to have the perfect words and be present with someone who walked beside them. Literally that going for a walk can be the most valuable thing. And just saying, gee, that sounds hard, and pausing is so important for interacting with everyone in your village and knowing that. Adversity is not experienced on your own. Adversity is experienced collectively, and the more collectively it can be experienced, the more likely you are to be successful in managing that.

Just a quick word on relationships. They do have patterns over time, and they change. MS tends to interrupt that. And when you're thinking about your village, they are all the relationships around you, so it's important to recognise that MS changes relationships and not just at diagnosis. It's particularly impactful at diagnosis, but over time as MS changes and lots of other things come in your life, relationships are not just a static thing. They do need work, they do change, they do fluctuate and there's lots of ways to place importance on relationships.

There are millions of relationships building tips. I could write pages and pages and pages and pages on these. You can go to social media and get hundreds of tips on how to build a better relationship. So, I've just taken a few, identifying your loss, allowing yourself to be vulnerable. Doing a relationship scan. You know, how's this working? Is it working well? What's going on here? Giving myself permission to prioritise your relationship. Take opportunities to reverse the caring role. So that's for people with MS and people who are not living with MS to care for each other in different ways. Beware of comparisons and even, you know, look at Joe Bloggs down the road who's living so well with MS and why are you struggling? You know, you may not always know what's going on in that person's stories. It's so important to be very, very conscious of comparisons. And resentment as well can be incredibly harmful and build up over time, so it's important to kick that elephant out of the room and have those conversations with people as you're surrounding yourself with your village.

You are likely to have children living with MS, whether you're a grandparent, whether you're not, whether you're a person at work who has children in your village. So, it's important when you're thinking about MS and how you can navigate your village that you acknowledge that they're children and they have different needs. There's lots of resources available on the internet for that. Here's just some practical tips that we've got. We've got a couple of fantastic webinars and podcasts on how to support children and even internationally, people have done a lot of work around this.

So, if you have children in your village and it's something that you're struggling with in terms of the way that you communicate and the way that you work with the children in your village. Then please just a little bit of Googling will give you so much information on how you can do that. And this is just some tips for me about, particularly children may worry more what they don't know than what they do know. That was something that I found that's natural for parents not to want to talk to children. But trust yourself, trust yourself in that you know your child. Children so often know that there's something going wrong. And the more you can talk about that the better. And children need love first and foremost is so important as well too. So, if you can create a loving environment, whether that be your children, or your nieces or nephews, or any children that are part of your village. To think about, how can I do this, how can I approach this with love? And that will be often, you know, you don't have to have the right perfect words. You don't have to get it right every time. They're very forgiving, children are very forgiving.

You may have teenagers in your village, and I've deliberately separated those because teenagers can be a bit of their own beast. And we talked to the head Headspace, clinical director of Headspace, recently about that and she's done a couple of videos and a podcast with us about talking to teenagers because we really realise this is a tough area for some kids and for some parents and for, you know, somebody who's looking at their village and the teenagers within their village. They want to do the right thing. The teenagers generally really want to do the right thing. And so, here's some tips about trusting yourself with your teenager. Don't be afraid to get it wrong. Don't be afraid to say you're sorry, you know, or that you're stuffed up and can you start again?

Encourage peer support. There are some really good resources in terms of peer support in Headspace and also some in MS as well too. More within the Headspace about that and also, I'm really so excited that teenagers now are really having such a better mental health literacy than what they ever have in the past and talking about it with each other and opening things up with each other and that's so good as parents to encourage that healthy sharing in peer support. And so, the Headspace is the National Youth and Mental Health Foundation for Australia and does amazing work in supporting the teenagers.

And then finally, when you're gathering your village, I feel like I should always end with a slide that thinks about self-care and the importance of self-care because, you know, difficult feelings often travel in packs. When fear and loss turn up, they often bring along guilt, shame, and disconnection. And as you're gathering your knowledge, as your part of the village, still remember to keep, to keep focused on self-care and sometimes it's just sleep, eat, breathe, and move. I love the simplicity of that. Am I sleeping well? Am I eating well? Am I taking the time to breathe? And am I taking the time to move? And that's, you know, that's just bringing it back to it is about you and it is important what you know, but it is still also about you.

Here at MS Connect lots of different services available to you. All the different services that we have to help you build your village. We are part of your village and feel honoured to be part of people’s village. We have resources available to people, webinars, podcasts, and articles on our website. Please give us a call, the lovely key workers will be able to talk to you at any time on 1 800 042 138.