Ben Mudge: It’s time to leave your comfort zone behind
Ben, many people have heard of cystic fibrosis (CF) people but won’t know anything about it. What is it?
There’s only 100,000 people in the world with cystic fibrosis. If people don’t know what it is, it’s hard for them to relate to. Everyone knows cancer, everyone’s been unfortunately affected by cancer, so it’s very easy for people to donate their time and their money to it because it’s close to home. CF is a genetic illness. You’re born with it. It takes two carriers of the CF gene to have a child with cystic fibrosis.
Both my mum and my dad both had the carrier gene. My older brother didn’t get it. He’s a carrier. My younger sister didn’t get it, but she’s a carrier too. And I was the lucky one! I got both copies of the gene.
CF mainly affects the production of mucus within the body. If you don’t have CF the mucus in your body is a lot like water in a jar. If you move that jar around, the water’s going to move very freely around that jar. If you’ve got CF, it’s not water in that jar, but more like PVA glue or wallpaper paste. So instead of helping the different systems of your body run smoothly, it clogs them up.
What are the major health implications of cystic fibrosis?
There’s a lot of health issues that come with CF. But the main one is death caused by the deterioration of lung tissue. That’s because whenever you get a chest infection or anything like that, the bacteria makes a home in that mucus.
It’s very, very difficult for your body to get the bacteria out of that mucus because its very thick and sticky. So the bacteria sits there and it destroys the lung tissue permanently. That happens over and over again until eventually the lungs no longer function and you require a lung transplant. And of course that’s not a simple process. You need a donor, there’s a risk of rejection, there’s myriad potential problems.
How has having cystic fibrosis affected you?
I would love to be able to tell you how it makes me different to everyone else, but CF is something I’ve had my entire life. I just don’t know any different. My parents did a fantastic job of raising me to not see it as a hindrance or a crutch.
They raised me in a way that was I had this thing, my brother and my sister don’t have it, none of my friends have it, it is something we need to look after. There’s medication and physio and visits to the hospital, but once all of those things were done they just let me be a normal little boy. I owe a huge amount to my parents for setting me up with such a good platform for me to then launch off the rest of my life with.
CF is different for everyone. It’s a genetic illness so there’s a myriad of mutations. I have the most common one that affects 50% of the CF population. I can only ever speak to my experience with CF. It’s not a fun illness. I really hope people don’t see me as the poster boy for cystic fibrosis because the reality is it’s killing people every day. It’s taking people away who are five, six years old, and I hope that my experience of CF doesn’t make people think, oh, well, it couldn’t be that bad.
I have done a lot of work to keep myself as healthy as I can but – I don’t like to admit – there’s an element of luck involved that I have to always acknowledge. I attribute that luck to me being born to my parents. My dad had a fantastic background in health and fitness from a police and military background, and my mum was a nurse. It’s only when I got older I realised not everyone was as fortunate as I am.
If crying and moaning and feeling sorry for myself cured my cystic fibrosis, I’d be balled up in a corner crying my eyes out. But it won’t
Your parents didn’t wrap you in cotton wool and let you experience the most typical childhood possible. Is that your advice to parents reading this who have children with health issues?
Yeah, 100% that’s the advice I give most people in a similar situation. I’m not a doctor. I can never give medical advice. But my entire approach to this is do whatever needs to be done. If that’s taking medication, if that’s going to the doctors, if that’s doing physio, whatever it is, get it done. Then, once it’s done, put it aside and just live your life however you want to live. And that’s how I’ve managed to live a relatively normal life. Don’t let it leak into any other parts of your life, and that’s honestly the best advice I can give you and give anyone: just do what you need to do.
You make that sound incredibly easy but it must be incredibly hard?
Yes, it sucks. Yes, it’s unfortunate. But there’s no other path that you can take. If crying and moaning and feeling sorry for myself cured my cystic fibrosis, I’d be balled up in a corner crying my eyes out. But it’s not going to help, that’s the reality of it. No one’s going to come and save you, no one’s going to come and help you. You have to put in the work and yeah, it sucks, but the alternative for me is not even worth thinking about. So I do what needs to be done. Once it’s done, I set it aside and don’t it leak into anything else in my life. I am far more than just my condition or my illness.
You said you don’t want to be the poster boy for cystic fibrosis, but through the work you do and the way you look, it’s impossible for you not to be. How do you deal with the pressure that inevitably comes from being on a pedestal?
There is pressure but it definitely leans more towards just sheer appreciation for the position I’m in. I appreciate it more than I could ever express that people do put me in this position. It honestly means the world to me. But I’m a normal person. There’s nothing special about me in any way.
There is a huge amount of pressure that can and does come with that in that I have eyes on me that I’m not even aware of from little kids and their parents. And I always have to be very careful with how I say things, how I word things, because I am in a position that I do have influence and I take that very seriously in the terms of how I conduct myself.
If I’m ever in a situation where I don’t really feel like doing something, I do it for the people who would expect me to do it. And that really helps me in those situations. So CF could be a crutch, but I’ve turned it into a weapon for myself to make sure that I’m doing the things I need to do. The impact that I can have on parents, that means the most to me.
When I was born in 1990 no one with CF lived beyond 30. My parents were completely lost and really didn’t have any hope.
Why is the impact you have on parents so important to you?
We made a documentary for Channel 4 and my friend shot it. He was asking my parents questions I would never usually be in the room to hear them answer. Like, why are you proud of Ben? Did Ben grow up to be what you thought he was going to be? All those things.
But one thing that really struck me was when we were talking with my dad. I learned a lot from my dad. He’s my hero. I’m so fortunate to be my dad’s son. He answered a question and he broke down in tears, which is very rare for my dad. He’s not emotionally unavailable at all, but it takes a lot for him to get to that point. He just said that the thing that really means the most to him is the impact I can have on children’s parents because he remembers what it was like being in their situation.
When I was born in 1990 no one with CF lived beyond 30. So my parents were completely lost and really didn’t have any hope. I don’t know if the internet existed back then, but certainly not in the way it does today.
And for my dad, he’s most proud of me for giving hope to parents of children with cystic fibrosis. Because most people don’t know about CF. They get this hammer-blow diagnosis. And then they Google it and the results are terrifying. So I’m doing my best to increase the awareness of it.
My goal is that when they Google it, my name comes up and other people with cystic fibrosis come up. And it’s that hope that I can give them that is, it means more to me than I could ever truly express. I get incredible messages from parents with children with cystic fibrosis and their relatives. A lot of them have just brought me to tears because no one prepares you to receive messages like that. When someone tells you that you have given hope to them and their child. There are no words.
There’s a lot of weight that comes with that. But I’m just doing my best. I see a psychologist to make sure I am dealing with it in the best way possible. I’m a massive advocate of looking after your head. It doesn’t matter how you look from down here. If your head isn’t right, then nothing else matters.
You must receive on a very regular basis the heartbreaking news that many of the adults and kids you know with CF have passed away. How do you even begin to deal with that?
Thankfully, it’s not as often now, which is good. I did have to step away from that world a little bit because it was affecting me so badly. There’s such a sense of survivor’s guilt that comes with that news. When you see an eight-year-old boy in a hospital bed with tubes everywhere. Surrounded by his toys. It takes a lot from you. You just think, why not me? Why was I so lucky? So it’s hard. Whenever you see a child or an adult or someone you’ve spoken to has just died from the condition you have, it’s really hard.
It’s incredibly hard to forget about. And the way I deal with it – and this isn’t what I suggest for anyone else, it’s just how I deal with it – is whenever I get that news, I grieve for them. I grieve for their family.
I may not have known them, but there’s a kinship or a brotherhood or sisterhood that comes with having this illness. You know what it feels like. You know how they’re feeling, their fears.
So I acknowledge it. I let it sit in me for as long as it needed to; that sadness and that grief and that survivor’s guilt.
And then visually, this is a very visual thing for me, I reach into that memory and pick it out, and look at it. And I ask myself can I take anything from this? Can I take appreciation from this? Can I take gratitude from this? Can I take motivation from this? Is there anything I can take from this?
If not, I simply set it aside and try to move on. If not, it’s just going to sit with me and it would not cause anything positive for me or the people around me.
The worst thing I experience is when I see someone has passed away within the cystic fibrosis community, and I’ll go and check messages on Facebook or Instagram and I’ll see that they’ve messaged me at some point, but I’ve missed it.
And that always sits with me really for a long time. And usually it’s them reaching out just to say thank you, or questions about what I eat and how I train. All those things. I did have to switch off messages on Facebook and Instagram because it was just too much for me to deal with.
And I’ve been doing this since I was 21. My brain wasn’t even fully developed at that point. To deal with that stuff, I wouldn’t wish it on anybody. Everything comes with the positives and negatives, like everything in life, but it’s really hard sometimes.
Very few people get a glimpse into their potential future other than through their parents or their grandparents. But even then, there’s a disconnect because of the age difference
Most people aren’t exposed to death until they’re well out of childhood or even their teenage years. You’ve been exposed to your own mortality since a very little boy. Are you ok to talk about how you have dealt and continue to deal with that?
Oh yeah, I’m willing to talk! It’s a big thing for me because us men need to speak more. You’re right. I was exposed to the potential of an early death, very early in my life. My parents protected me from that for a long time, but there’s only so much they can protect me.
But there was one moment that I’ll never forget. It is when I got hospitalised for a chest infection. I’ve been hospitalised twice for a chest infection, once when I was 18 and again at 21. That’s extremely low for someone with cystic fibrosis. Some people are in eight times a year.
I remember being in the ward. I was lying in my room and throughout random periods of the day, I would hear this noise. It was haunting. It was a really unsettling noise. And I could not work out what it was. There was no rhythm. No metronome.
When you’re in the CF word, you’ve got separate rooms because the risks of cross-infection are so dangerous. So you’re in your own little bubble. One day the nurse was doing her rounds and she had my door open and I could see across the hall into another room. And I heard the noise and I realised it was a young man coughing. I can still hear that noise in my head. It didn’t sound like a noise that a human could produce.
It sounded like the noise you’d make if you were pretending to be a monster to scare your friends. But even then, I couldn’t imagine how someone could produce that noise.
And I saw him briefly through the doorway. It’s still so clear in my mind. He looked so old. His spine was completely rounded over his forearm. His entire arm was the same width all the way up. No muscle. Nothing at all. And he was making that noise. It was him coughing.
The nurse closed the door to his room, came across to my room and I was terrified. I knew he had the same thing as me. I was 18. So I asked her how old he was. She wasn’t allowed to tell me but said his date of birth is on a sign on his door. Later I looked. He was born in 1988. I was born in 1990. So he was only two years older than me. And that was the biggest shock I have ever experienced.
Very few people get a glimpse into a potential future other than through their parents or their grandparents. But even then, there’s a disconnect because of the age difference.
I got a very close-to-home look at what my potential future could be. It scared the hell out of me. It still scares me.
But I looked at that situation and thought, what can I do? What are the things that I can control role that are going to slow down that process as much as I possibly can? I don’t know how that thought came to my head at such a young age, but damn, I’m so happy that that was my mindset. It could have gone a very different way for me.
Mortality has always been in the back of my mind. But at the same time, everyone else has a life expectancy. My life expectancy may not be as great as everyone else’s. But you could get hit by a bus tomorrow. You never know. So my approach to life has always been make the most of it as best as you can.
If you took my cystic fibrosis away I wouldn’t be the same man I am today. It’s given me so more than I could have ever even imagined
What has CF given you? Are there positives you’ve taken from it?
If you took my cystic fibrosis away I wouldn’t be the same man I am today by any stretch of the imagination. It’s given me so more than I could have ever even imagined. But it’s not like CF gave me anything. I’ve worked for it. I put myself in positions that the version of me with CF may not have done.
I realised my health was a massive priority for me. So I became a coach. It was the best thing I ever did. Since then I’ve had the opportunity to cross an ocean on a paddleboard. I’ve been invited to LA to audition for a TV show with The Rock. I’ve been able to raise so much awareness for this condition. I’ve walked 65,000 steps for charity. I’ve done a few TV shows, which is mad to say, it’s absolutely crazy. I’ve got to meet so many people. I’ve got to help so many people and I’m massively appreciative of that.
My hope is that it rubs off on other people in a good way. Look, life is short, brutally short. Just do what you can to make sure you enjoy your life. Again, this is advice I’m giving myself. I’m not always this way but I definitely have the ability to tap into that mindset. Maybe I find that easier than some other people because of my circumstances. I’ve had the privilege of being able to do some amazing things because of my situation and then putting in hard work.
You’re in amazing shape. How does CF affect your training?
My approach is always what would I do if I didn’t have CF? What would I be doing? How would I look after myself? How would I train? When I was 18 I was training with my friends. We were all doing the same thing as far as I was concerned, if someone walked into the gym and saw all of us training, you would never pick me out as the person with the illness and the one who needed medication. That was always my mindset.
So a typical day? I get up, go to the gym. I try and get my gym sessions done earlier in the morning. I don’t typically eat before I train because I’m not hungry in the morning. I’m still trying to establish a good habit and routine for myself. But the fundamentals are always there. I try and do some form of activity, even if that’s just going out for a walk or some form of relaxation. Recovery is just as important, if not more important, than your output and stress. If your body cannot handle the stress coming in because your lack of attention to your recovery, it’s like rowing with one oar: you’re just going around in circles. You need both stress and recovery to propel yourself forward.
How can men talk more about how they’re feeling?
I think people need to be a little bit more vulnerable, especially men. There’s such a stigma that men are tough and we don’t speak and we must be strong and silent.
Conversations can lead to some incredible things, but it typically takes one person to open up. It starts with showing that vulnerability and that relatability as well. Because everyone has these thoughts. Someone needs to be brave enough to say, right, this is how I actually feel. This is how I feel about this situation. What do you think? And then that slight crack of the door being open, sometimes it’s enough for someone else say, yeah, I feel like that too sometimes. And for guys, that’s a big, big thing.
You’re not there to solve their problems. You’re just there to listen.
My best advice is just be willing to be slightly vulnerable because that vulnerability could open the door for a conversation that could potentially save someone’s life. Suicide rates in men are devastating. So if you have to have a conversation that makes you feel a bit uncomfortable for a bit, do it. Because I guarantee that if you knew what the end result might be if you don’t have that conversation, you’d do it every single time.
Donate to the Cystic Fibrosis Trust.