S8E13: Men’s mental health with MS: coping, acceptance and support

Steve Rose (00:00)

When you first get diagnosed, you realize you’re suddenly aware you’re living with this beast. You’re living with this thing bigger than you, more powerful. It can destroy you. It can hurt you. It can scar you. And you can either live in fear of this thing or learn how to live with it. Work with it. Understand its breath. Understand how it works, how it operates, when it’s scared, when it needs calm.

 

So if you learn and you look at it as an external object, something that you can’t control in that way, but you then learn how to live with it. And that’s certainly how I visualise my MS really.

 

Overcoming MS (01:19)

Welcome to the latest edition of the Living Well With MS podcast. Joining me on this edition is Steve Rose. And Steve is a well-mined coach from Buckinghamshire in the UK. So without further ado, welcome Steve Rose.

 

Steve Rose (01:32)

Hi, welcome. Thank you.

 

Overcoming MS (01:33)

So to start off with, can you introduce yourself and a bit about your work?

 

Steve Rose (01:37)

So I am a well-mind coach, which is basically a psychotherapist.I deal with predominantly with men. And really what I do is I work with mental health issues. So it could be stress, could be anxiety, could be relationship issues. And I see people online and I see them face to face really. And yeah, that’s kind of what I do now. That’s my current job.

 

Overcoming MS (02:00)

And you’re also someone who’s living with MS. So you were diagnosed, I believe, about 30 years ago, and then also found the OMS program about five years ago, but you’d already been following some of the program’s pillars anyway. So could you tell us a bit about that, the diagnosis and discovering OMS?

 

Steve Rose (02:20)

So yeah, diagnosed in ‘94 and it was, obviously this is the day before I had much information, there was no internet, et cetera. So it was kind of working out myself what MS was from books I read in the library and et cetera. And really for me, it’s working on my instinct on what was the best thing to do and how my health reacted to things, I really designed and devised my own pillars for living and they were kind of around the head, around the body, because I was already a vegetarian so I wasn’t eating meat and certainly later in my journey, just before I found OMS, I’d stopped eating dairy. I’ve always been somebody who is very mindful and aware of what’s going on in my head as well so that was always a really strong pillar and also I think the mindset has been an important part of what I did so it’s about your attitude on having the disease and how you deal with it on a day to day really and yeah I think it’s attitude and mindset has been a key thing.

 

Overcoming MS (03:30)

So how did you go about, because you kind of a lot of it was you’re working it out for yourself. So you went through vegetarianism, veganism, and how did you decide which thing was working?

 

Steve Rose (03:42)

That’s a really good question. I think a lot of it is gut feel and also just instinct and gut feel really about what works, but trying different things. I remember trying supplements and also thinking what I know about the disease, because I did read about it. These kind of things seem the right thing to do. So therefore it was about knowing I’m going in the right direction, I think, and what works well for me and what works negatively for me. So those kind of things. So a lot of it is gut instinct, I would probably say is the real thing. And also the evidence for me was that I think of myself as reasonably healthy. I still exercise regularly. There are things I can’t do.

 

But yeah, I think of myself as quite healthy and I’m not angry at the disease so there’s attitude around that as well.

 

Overcoming MS (04:36)

And so you mentioned sort of being healthy and fit and I believe you ran a 10k to mark the 30th anniversary of your diagnosis. So how did that go? Running a 10k with MS?

 

Steve Rose (04:46)

Yeah.

 

Well, it’s interesting actually, because I’ve always sort of looked at stuff and challenged it. And I did that recently really, because I’ve always lived quite an active life, but walking and stuff. What I felt I couldn’t do was aerobic exercises. So I kind of told myself the story that aerobic was bad for my MS. And that was something I believed and I lived with for quite a long time.

 

Then about, it must be about two years ago now, I started thinking, do you know what? I’m not sure if that’s true. So I started doing the Couch to 5K. Couch to 5K is a program, but it’s about taking small steps to see how you get on to reach 5K. I started doing that and I was really nervous doing it because the last time I did any exercise, I was like running, I’d had an attack so I had a relapse and so I kind of had already told myself a negative story about that.

 

But what I started to do then was challenge that belief I had, start doing the couch to 5K. I took it really easy, but in the end I got the couch to 5K. And then that was probably a year before my 30th anniversary. And I just thought, do you know what, if I keep just gradually moving up, I think I can get to 10K, Which is, yeah, which is what I did. And I took it, it was scary sometimes when you’re doing it because you’re thinking is it going to cause me problems but the 5k was fine and now I think I’ve gone back to 5k as being reasonably easy okay to do I don’t really need to worry about doing 5k the 10k was a harder challenge and I didn’t really do it fast but I did it

 

Overcoming MS (06:15)

 Yeah. And you mentioned psychotherapy. So how do you approach the stress management and that mindfulness pillar of OMS?

 

Steve Rose (06:39)

So for me, I used to work in a high-pressured IT job. That didn’t work out particularly well.

 

in major industry, so I couldn’t do that job anymore. But I’d already started training from quite a young age, actually, probably around about just before I was diagnosed. I started training in psychology and then I went on to counseling. And I kind of kept that on the side when I was still working in corporate world.

 

And I kind of developed that. Then when I couldn’t work anymore in corporate IT, I started working then as a psychotherapist. And the reason it works really well for me is because I’m focused on the moment with the person in front of me. And I don’t need to be worrying about a hundred different things at once. So it works really well for me. And how do I manage in terms of my mindset and brain is I take regular breaks. know, when I take these things, I call them micro naps where which is basically meditation so I will sit in a room where I’m not disturbed set the timer for 25 minutes to 45 minutes and I would just rest let all the dust settle on where my brain is and then I’ll get up and I’ll tackle my next challenge for the day

 

Overcoming MS (07:56)

So because I can imagine there is that sort of like they say sort of physician heal ourself sort of thing but you could end up taking on other people’s stresses even though you might be there to deal with someone else’s stress you could be actually onboarding it to yourself as well and making your situation even worse.

 

Steve Rose (08:15)

That’s exactly right. But I guess the thing is when you, you know, it’s years of training to do this and you learn how to recognise your feelings with other people’s feelings and you learn then what to do with those feelings, you know, so you have a professional network around you, which is what I do, where I can talk to people confidentially about some of the issues going on with me or with what’s going on in the work when I’m dealing with clients.

 

Overcoming MS (08:42)

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Overcoming MS (08:52)

And so the thing that I’ve heard a term that you’ve used is that you visualise your MS as a tiger in a cage. So can you explain a bit about that philosophy?

 

Steve Rose (09:02)

Yeah, so, yeah, what I visualized is a big cage and in that cage is me and the tiger and you know sometimes it… I’m in the cage, yeah, so…

 

Overcoming MS (09:10)

Also, you’re in with the tiger in the cage. Okay.

 

Steve Rose (09:15)

That’s it. When you first get diagnosed, you realize you’re suddenly aware you’re living with this beast. You’re living with this thing bigger than you, more powerful. It can destroy you. It can hurt you. It can scar you. And you can either live in fear of this thing or learn how to live with it. Work with it. Understand its breath. Understand how it works, how it operates, when it’s scared, when it needs calm.

 

So if you learn and you look at it as an external object, something that you can’t control in that way, but you then learn how to live with it. And that’s certainly how I visualise my MS really.

 

And when you talk about running, I not bizarrely, I visually quite powerfully remember the last, on the last day when I was doing the couch to 5k on the last step, which takes about two weeks, two weeks, maybe a month. I was running the last section of that and I was visualizing the tiger next to me and it was, it was, it was almost jeering me along as well. You know, it was running with me. I was, I was telling it, come on, we can do it. Oh boy. You know what I mean? And we were just, and I really do visually remember that and seeing that tiger next to me in my head that’s that’s with me when I’m running that that last bit of 5k

 

Overcoming MS (10:33)

So you’re not scared of the tiger anymore, but you’re still living with the tiger.

 

Steve Rose (10:36)

No, no, no, no. I’ve gone through stages of being scared of the tiger and I still, you know, it’s still, I can still feel its breath and it still scares me, but, that’s okay. You know, I’ve got to, I’ve got to understand its breath and when it’s near me and when it’s, when it’s angry or something so I can respond to it and make sure I’m not going to aggravate it.

 

Overcoming MS (10:57)

And how did you accept your diagnosis, which is probably quite different from now, because 30 years ago things have changed dramatically, but how did you come to accept your MS diagnosis and what was that process where you started to make lifestyle changes?

 

Steve Rose (11:12)

I think for me, you know, it’s the normal process of grief. And I went through a lot of stages of actually being angry at it, crying, so I had lot of emotion about it. But I also told everybody close to me,

 

And really what happened by doing that, think, is part of the grief process, which is what you go through when you’re diagnosed and actually what you live with on a day-to-day basis with the changing nature of it. So I lived with that diagnosis and I lived with, I sat with it, I felt it, I experienced it, the sadness, the thinking my life is gonna change, et cetera.

 

But I think just time and talking about it, which I’ve always done, has really helped me through that really. Talking about it to people near me, not having to relive the trauma of having to tell people all the time and relive it. But then I got on with my normal life really. I went back to work and I worked for 30 years, know, virtually, still with it. But being aware of it, I would tell people a lot what it was.

 

Yeah, so that’s probably how I dealt with it, that makes sense.

 

Overcoming MS (12:19)

And what tips, as a sort of psychotherapist, if you had someone who came to you who’s just been diagnosed with MS, what tips would you have for that person to come to terms with their diagnosis?

 

Steve Rose (12:31)

It’s really hard and think there is a one size fits all. Everyone is different. But I think it’s important to talk about it and to not hide how you feel about it. It’s okay to feel really scared. It’s okay to feel hurt, angry and all those feelings and just really understand that that’s okay.

 

Make sure you know as much as you can you can talk to people as well because when you talk it just takes away so so much of the so much of the pain i think so i think the most important thing I think is yeah talking about it

 

Overcoming MS (13:06)

So have you got recommendations on how you would communicate and manage relationships with your closest people, your friends and your family after you’ve been diagnosed?

 

Steve Rose (13:15)

It’s difficult because ultimately you’ve got to find your tribe, you’ve got to find people who you can speak to about it, who aren’t necessarily going to be affected in the same way as your loved ones in your immediate family. To tell your loved ones sometimes that you’re scared of the future and what it looks like.

 

They might not really understand that fully because if they don’t have MS, they won’t necessarily understand what it is. So I think it’s a mixture of things really, if I’m honest, Geoff, it’s having people close to you. You can share things with your fears, but it’s also having finding your tribe that you can talk to and feel comfortable saying that this is really, really crappy having this and I don’t know what to do with it. And someone else saying, yeah, I feel the same way. And that can make you feel, might make it feel easier to carry that.

 

Overcoming MS (14:04)

So finding an MS group as independent to your friends and families.

 

Steve Rose (14:09)

Yeah, yeah, or a therapist or a therapist, know, a therapist is really good because they’re not, they don’t understand your world. They’ve got no skin in your game. You can say what you need and I think that’s really important.

 

Overcoming MS (14:18)

And as a man with MS, That’s another sort of subset. So we’re already a sort of like an unusual disease and we’re an unusual subset of people with an unusual disease. So to find that tribe, I believe that you might have a mission in the UK to set up a virtual pub for men with MS. So I was just going to ask you to talk a little bit about that idea.

 

Steve Rose (14:45)

Yeah, that kind of started it’s, it’s a, it’s not just the UK. I look at this as a global thing. I started Mighty Spoons, the name of the pub. It’s called Mighty Spoons and the idea of it is that it’s for blokes with MS who can come and they can have a beer. I want to make it not so much about my diagnosis is this. I want to make it more about, you know, removing the label from people. They can talk about it if they want. It’s relaxed. There’s no real pressure for them to talk about feelings. And it all started really when I was visualising, thinking about different ways about talking about stuff. And I came up with this idea of a jukebox and the idea of the jukebox is, you put a dollar in it and you spin the wheel and it comes up with a song and the group can talk about what the song’s about or the group can just listen to it, whatever, and other people can talk about it. So, for instance, it’s a way of sort of externalising certain things, making it a bit of fun trying to work it out you know so for instance it might flip around it might come up with Sex and Drugs and Rock and Roll by Ian Dury and the Blockheads or it might come up with I’m Still Standing by Elton John you know running up that hill so there’s loads of songs that bring up different subjects that people can talk about if they want or they can just say yeah it doesn’t affect me.

 

Overcoming MS (16:13)

But ultimately it’s just going to be guys from around the world getting together who’ve got MS, getting together for a chat, which might just be a social chat.

 

Steve Rose (16:18)

Yeah, absolutely and that’s kind of what men do well. We can talk about sport and then you know we can talk about that stuff really well. We probably find it harder to talk about the hard stuff but sometimes I suppose when confidence grows and you’re around people who understand it more you can feel more able to do that.

 

Overcoming MS (16:42)

So as a final point, do you have any tips for those newly diagnosed  with MS or potentially just new to the Overcoming MS program?

 

Steve Rose (16:52)

I think that the thing that I’d say about it is you’ve got to learn to understand the rhythm of your body, how your body works and you’ve got to also acknowledge the enormity of what a diagnosis comes with and knowing it changes all the time, it’s a living thing, it comes, it goes, you can manage it.

 

it is possible to manage it I think and hope is not lost but the feelings you have and what can happen and it’s a random disease in many ways as well so you can’t always control that so just to be just to sit with that is really hard but the most important thing I think to answer your question is to talk about it

 

Overcoming MS (17:29)

Okay, and with that, thank you very much for joining us, Steve Rose.