Connecting with your mates

MS Plus acknowledges the traditional owners of the land this podcast has been recorded on, the Wurundjeri people of the Kulin Nation. We pay our respect to their Elders, past, present, and emerging.

Kim: Welcome to the Learn From Me podcast series. Reaching out for support can be a big challenge for people with MS. Today we have the pleasure of talking to Mark, who's going to share his experience with supporting mates with MS to reach out for support. Welcome Mark.

Mark: Thanks Kim.

Kim: Now Mark, you've spent quite a lot of time with men in your life, through bands, groups, cricket clubs, etc.

What's been your experience of men supporting each other?

Mark: Depending on the situation if it's emotional, if it's a personal matter you usually find men won't talk about it. You usually find men will close up. But then if it's a mate matter, if it's a sporting environment where something hasn't worked, men tend to work together a little bit more, which is sort of a contrast to how life really is.

So, I know when I originally got sick my mates, didn't know what to do, didn't know what to say, didn't know how to act, didn't know how to react. So, it took them a while to come around and understand what I was going through, where I was at and my thought process and what I needed.

So, I think there's still some stigmatism out there and there's still some barriers and walls with men that hopefully as time goes by, you can break them down.

Kim: That's really interesting that you should say that people tend to relate okay around the footy and sport and dig in and help each other.

But when it's matters of the heart and your diagnosis of MS, they found it quite challenging.

Mark: Look, I think it comes down to if people haven't lived through it, if people don't have an understanding of it, they're scared of it, and they don't know what to do and how to act you know you're very unsure of what comments you need to make.

To someone who's just been diagnosed with something that virtually has no cure. How do you react to that? What do you say?

Kim: So, in talking about some of the barriers, you mentioned the stigma, that there can be stigma in talking from the heart and from emotions. How do you get around that?

Mark: For me, because I went through a raft of emotions where I hated the world and I didn't want to talk about it, I didn't want to acknowledge it, I didn't want anyone feeling sorry for me and I probably put up a wall around myself and it wasn't until of all people, my boss at the time, my manager, who was really supportive of.

Everything I was going through with the treatment and so forth, he said to me you need to go and talk with someone. You need to go and have a conversation with someone because you are pushing people away. At that stage, I was pushing my staff away and I was quite angry with the world and it wasn't until he sat me down and opened my eyes to that I made that conscious decision to go and talk to someone.

And that was probably, for me, the turning point, biggest turning point of my life, really. Apart from the diagnosis of MS, but to go and actually talk to someone and have my thoughts and my emotions opened up completely changed my outlook on not just the illness, but life in general.

Kim: And it sounds like it was a real positive step that if your boss hadn't noticed and said to you, Mark you need help. What might have happened, do you think, if you'd been going down that road and didn't reach out for help?

Mark: Look, I think I probably would have not had a job in the first instance because, you can't continue to treat people the way that I was at that time and sustain that.

And I pretty much shut everyone out, you know even some of my best mates. I wasn't talking, wasn't pleasant to be around them as well. So, I think I would have lost a lot of friends, I would have lost a lot of people that had been my friends for a long time and people around me.

So, I think it was once I identified that and I went and did it, I think that's what helped. But there were some big consequences if I hadn't.

Kim: Sounds like you would have lost some mates, your job, quite a lot there. Very thankful to your boss for noticing it and encouraging you to get help.

Mark: Definitely.

Kim: And after opening up, how did that feel once you finally started to tell friends and people.

Mark: Good, it was great. And it probably started to change my mind around men in general and their health in general and their attitudes in general. And got me on the path to wanting to help me learn to talk, learn to come out, learn to show their emotion and talk about where they're at with things and not be afraid to tell someone, hey, I'm not doing okay.

And hey, you know so it made me really determined to start that process. And even aside from anyone with illness, it actually even changed my way of work. My whole mindset of how I interacted with people and staff and how I managed and became a different manager after it.

Kim: In what ways do you think Mark. In what way do you think you changed in your management style?

Mark: I was more inclusive and more collaborative after all that. Previous to that, it was my way, and this is the way it's going to happen. Whereas I had changed my whole philosophy around involving everyone, everyone having their say, everyone having their ideas, everyone feeling that they were part of the business or part of what we were doing. So, it changed that way of work. And then with men in general. Even around the cricket club I was president at the time and that changed the way I looked at the cricket club and I looked at how we ran that cricket club. I actually went out and hired a new captain and coach that was really culture focused and changing the whole culture of our cricket club around how we acted and reacted and interacted with people. To the point where during that period, we ended up with our first female cricket team.

Kim: How awesome.

Mark: So just getting out there and talking to someone just changed that whole, probably my whole life, I suppose, in the way I did things.

Kim: It sounds like you've discovered how important connecting with other people is.

Mark: Absolutely. Which led me then to try to get a men's group going for men with MS.

So that was a goal I had because I noticed there was nothing really out there for men in that space with MS. So, I wanted to try and get a group going where men could actually start to talk and talk about their feelings and not be afraid. You know, you're in a room with other men, don't be afraid to talk about where you're at, where your thoughts are, where your feelings are you know, what support do you need? What you know, how can we help? What do we do?

Kim: That's so great, Mark. You're a real good advertisement of the importance of opening up and tackling some of those stigmas around being tough and not chatting about emotions. Because you've seen so many benefits to doing that and your good work is still carrying on.

The group that you started evolved into a dinner group that still meet today, which is fabulous. And now we have over three different men's groups that meet virtually as well. So, we're slowly getting there.

I guess that brings me to the question what would it mean, do you think, if we could get more men connecting?

What do you think that would mean for men with MS?

Mark: I would hope that it gives them a sense of understanding that it's, especially with MS, it's not the end of the world. You can still function, you can still do things, you can still have a life, you can still be part of a club a sporting association, or you find that niche that works for you.

That's what I would think you would get more out of with more men talking about it, more men being in groups. I know when I was first diagnosed, the first thing I thought of was, I'm done. I'm in a wheelchair. I'm no good. You know, there's nothing to look forward to. Off I went to our family doctor, and he looked at me. I handed him the piece of paper with the diagnosis, and he looked at me. He said, yep. And he's like I've got patients with MS that are climbing mountains, literally.

Kim: Fantastic. Great, great insight.

Mark: Right. So, I think men can get into these groups and into the MS side of things and talk about these things.

Talk about what's available out there and don't be afraid. Your life's not over. You're not going to be, you know, pigeonholed into not being able to do anything. There are things you can do still.

Kim: Fantastic. It sounds like you focus on what you can do, and your doctor helped you to look at, hey, let's not look at what the worst-case scenario is.

In fact, there are people that live very well with MS.

Mark: Correct. Absolutely. I think that's a key message and that was one of the key messages I tried to get in the group when I first started it. You know, don't pigeonhole yourself into not being able to do anything. And back then I was determined to go back to play cricket, which I did, and I'm there back into my music and doing that it virtually nearly every weekend.

And I'll probably flip the other way now or I'd actually. So, I hope that that shows men and people that you can still do things. You can still be and contribute.

Kim: Absolutely. So, if you could go back in time and give yourself advice, what would it be?

Mark: It's very good question. I think, don't be stubborn and don't be scared and don't shut yourself out. Don't be afraid to talk. Don't be afraid to go out and talk to someone. I mean, it doesn't necessarily have to be going and seeing a professional person. But just talk to someone, talk to someone who's prepared to listen, prepared to understand, and don't be afraid to put it out there. I think that's the message for me.

Kim: What would be your key message, Mark, as we launch into World MS Day, for men out there that have just been diagnosed with MS?

Mark: Probably Talk, talk to someone. Don't be afraid and show your emotion to people.

It's okay to be scared. It's okay to be worried but it's also okay to be strong and it's okay to show people that you have got a raft of emotions going on as you do when you get these diagnoses. But don't be afraid, go out and talk to people, go out and talk to whether it's your best mate, whether it's your partner, whether it's your boss or whoever, talk to someone.

Kim: And sometimes that's hard for men, isn't it?

Mark: It is absolutely hard for men. But you've just got to be not afraid. Don't be afraid.

Kim: Fantastic. Great messages. And I guess the key message being, don't be a stranger. Connect in with other men. Join a group, ring in, and talk to someone like Mark. We have peers at MS Plus like Mark that you can speak to.

We've got groups that you can link in with. Various ways to connect with people with MS. Thanks so much Mark. If you'd like to talk to someone like Mark, please don't be a stranger. Ring MS Connect on 1 800 042 138. There are peers just like Mark you can connect with for a confidential conversation.

Please reach out, thank you.