← Living Well with Multiple Sclerosis
Living Well with Multiple Sclerosis
MS diagnosis: how facing fear changed my life with MS | S8E22
00:27:55
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- [00:00]
Patrick Bevan
I do like chips and I try and avoid them and I do slip but I'd have to have a talk with myself and say actually you're 70, 80% of the way there, so don't beat yourself up. And I'm trying. This is the ADHD point that I'm trying not to slip further. If you like it, it'd be very easy to start just oh well, I'll go have a kebab, but then that'll become two kebabs. But it's tried to keep bringing myself back to remind myself why I'm doing this.
- [00:28]
Podcast Producer / Announcer
Welcome to Living well with Ms. This the show comes to you from Overcoming ms, the world's leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life. Through the Overcoming Ms. Program, we interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. Receive monthly tips and ideas about living well with Ms. By signing up for our newsletter@overcomingms.org Newsletter and now let's meet our guest.
- [01:07]
Jeff Alex
Welcome to the latest edition of the Living well with Ms. Podcast. Joining me on this edition is Patrick Bevan. Patrick is a business strategist, advisor and founder based in the UK with a background in senior roles at HSBC and Deloitte. He now runs two organizations, Change Alchemy, supports leaders through complex change and even all is his mission driven tech venture focused on helping manufacturers embed sustainability through clearer strategy and better decision making across both. Patrick's work centers on simplifying complexity and helping people move forward with confidence. Patrick was diagnosed with Ms. In 2006 at the age of 26. For 16 years he looked outwardly healthy while privately carrying intense fear, anxiety and denial about his condition. Although he discovered the OMS program early on, he struggled to engage with it, held back by avoidance and self doubt. A shift in his symptoms in 2022 became a turning point. Since early 2025, he's embraced the OMS lifestyle, becoming a Circle ambassador and committed to sharing his story to others so others feel less alone and more empowered to take control of their own journey. So welcome Patrick.
- [02:13]
Patrick Bevan
Hello Geoff. Thank you very much for having me.
- [02:16]
Jeff Alex
So to start off with, we always start with this question. Could you introduce yourself and tell us a bit about your Ms. Journey?
- [02:21]
Patrick Bevan
Yeah, I'm Patrick bevan. I have 56. I have relapsing remitting Ms. On the Ms. Journey. I was diagnosed 19 years ago, half years ago. I was in a difficult situation with the job I had. I was very, very stressed. I Was on a murder trial in the jury at the Old Bailey, which was horribly stressful and I had a mega virus. I had really nasty flu, but I'd trawling to the Old Bailey for this jury every day. I'm sure they probably didn't want me there. And after a couple of days of this, I started to lose control of my right side and eventually I was sent home, went to my doctor, told her I had a virus, went to my doctor again a few days later, told just virus, it'll pass. But I persevered and finally after about, I think, I'm trying to think, I think it was three or four doctors that I saw because I wasn't getting any better. I had a very limp arm and leg on my right side. I could walk, but shuffle and one agreed I should be sent off to an mri. And luckily I had private health through this horrible job I had at the time and then pretty quickly got the mri and they said, yeah, you've got ms, don't worry about it. Which terrified me, which is the last thing you want to. Don't worry about it, you'll be fine. I think is what the guy said. And that started my journey. What was that 2006 you've mentioned in the past?
- [03:41]
Jeff Alex
About a 16 year gap between being diagnosed at the age of 36 and looking healthy but feeling fearful. So what was that period like?
- [03:50]
Patrick Bevan
I think it's on the outside it probably looked fine, but internally I think when I got diagnosed, it's terrifying, it really is. And I ate everything I could off the Internet to find out what was going on. I went to NHS meetings with lots of very disabled people in tears, screaming about when am I going to get better? I didn't get a good impression of Ms. At all. I tried low dose naltrexone for a little while, but dropped that. I think one of the things I did was I hid from it. I didn't want to shout about it. I. I think I was ashamed. I didn't want to be that person, I didn't want to be the difficult disabled person. I, I really thought in a couple of years time I'll be in a wheelchair, I'll be bankrupt, I'll probably be living in a box and then I'll just die. And that's to the healthy outside world. Here I am with my two young kids and my beautiful, wonderful wife. All looks great, but inside it was turmoil. So I didn't embrace it is probably the easy way of saying it. And also in those scene, 16 years very little happened. I had a few flare ups, which were minor. I dropped out of the system. I think I had an Ms. Nurse for the first couple of years, but then that finished because I didn't keep that up. And it's not that it disappeared from my mind, it was always there, it was always a fear. And depression was on and off because of that and anxiety was because of that. But yeah, it was never bad enough for me to really pay attention to it properly until 2022.
- [05:18]
Jeff Alex
So is that why it took you so long to engage with the diagnosis? Was it that that fear combined with a lack of really bad symptoms?
- [05:27]
Patrick Bevan
Yeah. I now think I probably should have been on meds, but I don't want to take meds. I'll be fine. That was the outside world, but internally it was like a ticking time bomb for me and a constant fear. And it took another relapse. 2022, you might have heard lockdown. Covid. We were coming out of COVID and I ran a marathon after being diagnosed those 16 years, I did the most amazing things. I took up cycling cycle lands. I did show the growth. I ran, took up running after my diagnosis because I was fully fit, I could do these things. And I ran 40, 50 park marathons and all sorts of. I was just, I was more active than I was before and healthier since. But I was supposed to do our marathon before lockdown when I was uber fit. But I actually ended up doing that the Brighton marathon after lockdown, when I was slightly less fit and I didn't get the time I want. And I exhausted my body totally. And within a week of that, I caught a very bad virus, which I've since thought is quite common when you do something like a marathon. And I lost my left side and unfortunately that hasn't come back fully. It came back quite quickly and I was able to run a half marathon, but with a bit of a sluggish left side. But I've since had a relapse and now and it feels awful when you see people who are properly disabled. But I can now run 5K, which I, I, I tell myself to be happy about, but it's a, it's a constant nag. But something happened about a year or so ago which made me think, I've got to treat this seriously, because I'm now on meds, there's more I can do. And that's pretty much what brought me to overcoming Ms. And really to get me to get my head out the sand.
- [07:02]
Jeff Alex
So you found out about overcoming Ms. Quite early on and the benefits of having a healthy lifestyle but you didn't embrace it straight away. So what stopped you from embracing that?
- [07:14]
Patrick Bevan
The Wonderful Ruth Stross, Ms. nurse who was my Ms. Nurse for a short period but then she moved on to another area which is a shame because she's fabulous. She gave me the book in 2022 and I don't think, I don't know if I just wasn't ready at the time, I wasn't ready to really embrace it. I don't know if it was fear or avoidance or what it was, but definitely early last year when I had this relapse or flare up, we don't know what to call them. It's a flare up really, I suppose. And I wasn't able to run any distance and I was looking at all my running kit thinking I'm going to put that in the bin. And I wanted to get an honest answer on is running good for my Ms. As in should I try and run and try and get better or should I just sit on the sofa and watch Teddy? There are times when I think I should have done the latter and stuck with that and been happy. But actually it's that that made me pick up the book that made me read it and take it seriously and realize just how much there is to overcoming ms, just how much there is to the organizations, to the charity, to the seven pillars, to the support it gives. And yeah, it's been an interesting year and a bit that I've been involved and it has totally changed my attitude to Ms. I'm now very open about it. I'm not still don't want to be a disabled person. I'm still terrified of that if you like. But yeah, I don't hide from it anymore.
- [08:37]
Jeff Alex
And in 2025 then. So you, you then found the courage to face Ms. Honestly and completely. So what changed in, in the last year to do. To do that?
- [08:49]
Patrick Bevan
The big thing was that running thing that I had the confidence to actually because I didn't even tell my Ms. Nurse that had a flare up. I just felt really sad and when you feel like that, you don't really feel like doing anything. But through rose throw through the book I started trying to run and I realized that I was getting better and my running distance was getting better and reading through it, the confidence it gave me to think, well okay, let's try the diet thing because I've always been going vegan was actually surprisingly easy. I slipped, we all slipped. But I've tried every bit and I felt Empowered. I think that's the big thing that changed. But for me now, other than the fact that I've got a minor injury in my calf, I'm running three or four times a week, 5, 6, 7k at a time, unhappy and genuinely, I'm never going to get a pb. It's not going to happen. My fourth mile is always like Captain Peg Leg hobbling, but it doesn't matter. I'm loving it, I'm ashamed, I'm injured. So I've seen firsthand just the benefit of having that positive attitude to certainly the exercise side. But how it's impacted me has been. It's transformed me. And I'd add to that as well the group that the confidence being part of something like OMS has brought me. It means I'm happy to stand up and say, yeah, I've got Ms. So what, and what does it say? It's a diagnosis, not a destination.
- [10:19]
Jeff Alex
And I think we need to be a sort of visible side to ms, because certainly, I think when you said, when you were first diagnosed, you just think wheelchairs, don't you? That's. And I mean, I mean, I use mobility scooter now, so I'm not saying there's nothing wrong, you know, you use what you need to use. But it. Ms. Doesn't necessarily meet what the public perception is. I think the vast majority of people in my circle, you wouldn't know they had Ms. You know, it's an invisible illness in many situations. I think if people realize that, that most people who are looking after themselves and living a healthy lifestyle, most people don't go through what the public perception is. I think it's good for the people like us sort of stand up and say, no, I've got a mess.
- [11:13]
Patrick Bevan
And it is something that we can see. You're right, it's something we can see, we can live a full life with. There is the very dark side, but if we think about fear, the amount of my life that I now think has been wasted with fear as opposed to living, that's way more than anything, any, any of the effect that's actually really physically happened to me and it's getting rid of that that's key to me. And so, you know, stigma.
- [11:42]
Jeff Alex
So you talking about fear as a quiet companion, how did, how did it shape your decisions and relationships? And, and do you now feel in control of that fear?
- [11:52]
Patrick Bevan
More in control. More in control, Yes. I think the biggest way it shaped me was I mentioned I was in a difficult job when I was diagnosed, when I Was diagnosed. The job I was in was in a very big company and I just thought, well, they're going to look after me. So I wouldn't leave. And much as I didn't enjoy my job, I stayed in that company because I had young children, a mortgage, be happy with the job. And I was miserable. But that was fear that nobody would employ me. That company made me redundant, gave me a nice fat check, thank you very much. Spent that, spent it well. But then I applied for a job at Deloitte through a friend. This is 2014. And I was terrified of how they'd react and I did. I got this call from HR saying, hello, it's HR from Deloitte. We see you put Ms. On your forms. Like, yep, here we are, I'm going to get to the. Can't work here. And the woman just started listing off their. Well, do you want support for this? Do you want different hours? It was the opposite of what I expected because it's that fear of. It's a bad thing. People aren't gonna welcome this. And actually, yeah, that was refreshing. So there've been good things about the fear, but I think the last couple of years has really been about getting rid of that fear. It's just baggage. It doesn't help. If something happens, we will deal with it. We've got a friend who has just been through nothing to do with ms, but just had a very serious injury which is life changing and she's dealing with it amazingly. You deal with things.
- [13:18]
Jeff Alex
Yeah, yeah. That's the way you got to treat it, isn't it? And so there is another thing because there's a lot of people have other conditions as well. And in addition to ms, you also live with ADHD and rejection sensitivity. So how did having those conditions affect your Ms. Journey?
- [13:39]
Patrick Bevan
I'm not going to go through the full ADHD thing here, but it's very hard to keep a consistent thought train going. I know. And I think when, when I was really heavily on top of my OMS diet, my meditation, I was, it was great. But ADHD demands Dopamine. I need entertainment and there's no entertainment in a restrictive diet. I'm doing meditation every day and I've slipped and I need to do, I need to find things to keep pulling me back. And that's the challenge of adhd. ADHD is brilliant, actually, because I can be quite insane, have mad ideas and that's fun, but it's not helpful in many situations. One thing I have done purposefully and it's selfish is I've become an ambassador of OMS to set up the exercise circle to run with Mark Taylor. Brilliant guy, he's our friend. To run the exercise circle stealthily, because if I don't do that, I won't do the exercise. I need to be involved. I need to make this sticky or my brain will dither and I'll disappear onto something else.
- [14:44]
Podcast Producer / Announcer
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- [15:01]
Jeff Alex
So, as a. So as a volunteer circle ambassador and with the exercise circle for overcoming ms, can you tell us a bit about that exercise circle and how people could get involved with that?
- [15:12]
Patrick Bevan
Yeah, it's. It's still quite new and I think we've got about 50 people on there now. Interaction starting. We're trying not to be prescriptive. We did think, do we turn it into a triathlete gang? But it's only Mark Taylor that actually wants that, because you're the only person we know daft enough to do it. But it's about exercise. Whether it's dancing in your kitchen, it's. Or keeping running. 5Ks. For me, it's. It's keeping it going, it's giving yourself little nudges and help each other along. So we had a challenge in April of what could you. What goal could you set yourself? That's a little bit of a stretch, but it's still forming and I'm actually excited about how it's going to grow because it's going to be there for people to talk honestly and openly about what exercise is for them in this strange world we live in with ms, you know, Great. You went up five stairs today and you could only do three yesterday. That's actually brilliant. Well, you. Only five steps. We've all been in that club where you. You're the slowest person. Nobody likes you. Actually, in our club, you're the slowest person. You're very welcome. I ran something at Deloitte. I set up a running club at Deloitte when I worked there called Jog on and the purpose was 5k every Wednesday lunchtime jogging. And we had people that want to do sprints and they didn't last very long. Chatty jog, that's all it was. So it's. It's that, it's. It's. You're not alone. This thing's hard. So let's help each other and if we can encourage each other, all the better. And that's what we want. So my stupid challenge was to run a park run a different park run every week in April, which I did. And then I popped my calf. But yeah, I went to York. I went all over the place. So as soon as I'm better, I'm going to carry that on because it motivates me.
- [17:01]
Jeff Alex
There's also, I know parkrun's an amazing thing. So there's a work colleague of mine was, he was trying, you get different badges and he was trying to do the Alphabet because the actual park runs are named after a very specific location. But yeah, he did manage, he managed to do the Alphabet
- [17:20]
Patrick Bevan
actually designed for people with Ms. In a weird way because I'm doing the Alphabet. I live very close to the first park run, Bushy, near Hampton Court. And it's been going for 20 years. But none of these weird clubs happen that, none of these weird challenges. There's a BGS challenge, three B's, three G's, and it's the name of the club. So it's, it's all about getting you involved. But for people with ms, there's, there's the walking, there's the run walking. They have different, different sets. Doing the same 5K you Marshal, I've marshaled them. And you see so many people are actually walking at the back. The guy running the front in 15 minutes, that's great. But there's quite a few people that finish it after a nice walk for an hour around a park. And it's for everyone. You can take your stroller, do it in a wheelchair. There was actually somebody at Bushy, which is a very wobbly course, doing wheel in a normal wheelchair, not a sports wheelchair. It's a way of getting together and everyone's supportive.
- [18:16]
Jeff Alex
And you now follow the Overcoming Us program. So you eat an anti inflammatory diet, you exercise, reduce stress, take vitamin D and medication as needed. So of those which pillars have you found it both easiest and hardest to adopt?
- [18:36]
Patrick Bevan
Easiest is exercise because it's direct and I can see it. I'm gonna say diet is 50, 50. Cause I'm large, I'm vegan, I eat fish. Vegan with fish. Pegan I think some people call it. But I do like chips and I try and avoid them and I, I do slip. I'd have to have a talk with myself and say actually is 70, 80% of the way there. So don't beat yourself up. And I'm trying. This is the ADHD point that I'm Trying not to slip further if you like it. It'd be very easy to start, just, well, I'll go have a kebab, which we've talked about, but then that'll become two kebabs. But it's tried to keep bringing myself back to remind myself why I'm doing this. The one I do struggle with, which is annoying, and I think this is an ADHD one, is meditation, because I do know the benefits and I do appreciate it, but it's the one I get to the end of the day and realize I haven't done.
- [19:32]
Jeff Alex
I think it's the most common one when we ask that question, that meditation's the hardest one for most people. I think it's quite easy to say, this is my diet now. I. I mean, everyone has a diet to some extent. So there's, there's rules everyone has by what they eat. And you say we follow these rules. I do it all the time. It's fairly straightforward. Yeah. The mindfulness is like, you've got to find a bit of time, haven't you? And actually you feel better for it after doing it.
- [19:57]
Patrick Bevan
A day like Faith all looks nice and calm. But I've been working since 7 o'. Clock. I had a lot to get done this morning. I've got stress on both of my businesses at the minute. I've got a meeting after this. I haven't got time for it today. Today is exactly the day that I need to go and turn everything off and have 10, 15 minutes sat in the garden just for me. I know it works.
- [20:21]
Jeff Alex
And then ultimately you probably get more done. Yeah. Having done it. Yeah, I agree.
- [20:27]
Patrick Bevan
I was going to say there's a really good brain training thing and I help people with this. It's. We call it the five, four, three, two, one. And it's five minutes. The first minute is just let your mind go free. Second minute is write down everything that's in your mind. The third minute is let your mind go free again. The fourth minute is write it down again. And then the fifth minute is let your mind go free. And you'll realize that you've kind of emptied it and it's such a simple little cleanser because you've got chaos going on in your mind. You've got, oh, gotta hang the washer. I've got to do this, I've got to buy that for dinner. Scribble it down. It gets out your head. It's weird. So there are so many little quick tips, tricks you could do, but finding the time and it's almost like a reward and treat and looking after yourself is key to it.
- [21:12]
Jeff Alex
And so you're an entrepreneur and you've founder of Change Alchemy and Evan All. So what's your mission and how do you balance working hard with protecting your health?
- [21:24]
Patrick Bevan
How do I balance it? I don't know yet. I think there's a certain amount of stress. If I wasn't working, I'd be more stressed than I, than when I am working. My mission was I had a great time at Deloitte but realized probably through my ADHD I'm better at solving lots of problems and coming up with new novel ideas for people. So I set Change Alchemy up as just that, to go and work with what I call the lonely business leader and be their thinking partner, their challenge, their strategy person. And it's perfect for me because I get new tools to play with, new toys and they don't get a full time employee who's going to get bored in six months time. So that's what that one's about. I'm actually leaning much more into AI because I'm seeing so much fear from business leaders now about AI when what I know is it's not AI that's the problem, it's leadership. It's leadership, it's just another thing. AI is just another thing. It's a very scary one, it's amazingly fast. But I've, I've just come up with one where I'm, I'm excited about this one so I will say it. The AI war room where we actually get a leadership team in and just war game AI for their company. And again it's not what doing you're doing in new systems. No, it's you need to think about your business model, Paul. It's get people to think about how they work together because the storm is coming when it's actually here. So there's that but so my mission is all about helping people and it sounds quite twee but it really is. I enjoy being that catalyst, that connector that sees other people's problems and works them out. If you tell me a problem you've got, I'll know who you need to talk to or it's just natural to me. And the other one even all is the sustainability one I'm building with. We're building it around Professor Steve Evans sustainability model that he built at Cambridge University. Very simply, manufacturers could be saving at least 5% every year and we can be bold and say pretty much everyone could be saving 5% at least year on year in energy, materials and waste without buying new kit just by looking in the right places and then not doing it. There's all this hidden waste just waiting to be found and we find it for manufacturers. So that's exciting because that's very much at the start of that one. We've basically built an AI system to deliver that because what we don't want is expensive consultants delivering that because that actually costs more than the 5% you're going to save. We've systemized it.
- [23:52]
Jeff Alex
And how. How do you manage your health with what must be quite a stressful job?
- [24:00]
Patrick Bevan
I need to get back to you.
- [24:03]
Jeff Alex
This is a work in progress.
- [24:05]
Patrick Bevan
I think it's. It's part the ADHD brain that I'm busy. Whenever I try and do something as strict as I'm going to have, every 9 o' clock till 10 o' clock to myself, as I've seen other people do, I can't, because I'll sit there, my mind will go, oh, I've got an idea and I'll go off. I think it's about appreciating what I am. I think the key things to my health are. And unfortunately, the dog who was quiet is now here. It's going for a run with this one here. It's finding that space, but appreciating. When I'm in that space, my mind's going to be thinking about the company I'm currently supporting with a strategy and I've had an idea and I'll stop and write that on my phone and that's fine because I'm not going to change. But I think it's key at the minute because both businesses are quite challenging for different reasons. Um, good. Challenging growth, challenging. I'm quite stretched. I don't have time. And that's back to the meditation piece. So it's a timely question. I need to be better at that one.
- [25:02]
Jeff Alex
And this is a question we often ask. What piece of advice would you give to your former self? Or for anyone who's newly diagnosed with ms?
- [25:11]
Patrick Bevan
I would say buy a packet of Mulberries, grab a kebab, get drunk, have some brandy and then never do any of that again. Go and see Ruth Strauss and get yourself a free book called Overcoming Ms. And embrace it. And not just. Not just embrace the pillars, embrace the community. Because it's lonely having Ms. When we're in this Ms. Bubble, there's lots of us. But if it wasn't for overcoming ms, I wouldn't know any people with Ms. I haven't actively searched them out. So come and join our community. Come and join the gang. And you're not actually going to miss. It's so what, you don't eat steak, but you can eat some great fish. You don't need chips every day. I know I'm northern. I know that's written in my, you know, it's in my DNA. But embrace it. Don't, don't hide. So that's easy to say. Come and talk to one of us and we'll help you in.
- [26:01]
Jeff Alex
And actually, if you eat freshly prepared natural food, it's actually delicious. A lot of the time it is.
- [26:11]
Patrick Bevan
And all of my discoveries recently, and I was, I only said this yesterday because I was in a very nice restaurant in London. I would go into a restaurant, look at a menu in the old days and go, yeah, yeah, lots of good stuff. I'll have the steak, please. It's always a steak because I'm in a restaurant and I'm a steak. Now I'm going off piste. I'm having aubergine meals and that's really nice. And I'm having. Oh, I'm having grilled fish. That was lovely. You're spot on, Jeff. There's so much more. Yeah, it's just different.
- [26:36]
Jeff Alex
So with that, I'd say do check out the Overcoming Ms. Circles. And as mentioned, you can be a member of multiple circles, so the exercise circle is certainly a beneficial one to check out. And thank you very much for joining us. Patrick Bevan, Absolute pleasure.
- [26:53]
Patrick Bevan
Thank you very much. Thank you.
- [26:57]
Podcast Producer / Announcer
Thank you for listening to this episode of living well with Ms. Please check out this episode episode's show notes@overcomingms.org podcast. You'll find useful links and bonus information there. Don't forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming Ms. Community. Our theme music is by Claire and Mav Dean. Our host is Jeff Alex. Our videos are are edited by Lorna Greenwood and I'm the producer, Regina Beach. Have questions or ideas to share, email us@podcastovercomingms.org we'd love to hear from you. The Living Room with Ms. Podcast is for private, non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.