Life is short, so do what makes you happy
Sally Wright, Head of Marcom and Shivam Arora, Web and Social Media, interview Matt Iseman
Interview with Matt Iseman - 12th January 2017
Matt Iseman is the host of American Ninja Warrior and recently won America’s Celebrity Apprentice. He is also a stand-up comedian and an MD!
So, tell us a little about your story Matt
Well my symptoms started about a year and half before I was diagnosed. I was an MD at the time, my dad’s an MD and some of my friends are also doctors but despite having all that information it still took me 18 months to get a diagnosis. During which time, my body really fell apart. I gained about 45-50lb. The pain in my hands, feet, neck, my whole body plus all the fatigue that was going on meant I stopped working out. It impacted me so much physically and emotionally that when I was told I had rheumatoid arthritis it was a relief; people find that hard to believe. For me, it was harder to deal with all these problems and not know what was going on or what was wrong. You have to internalise all that - ‘suck it up, you’re fine’, but you KNOW something is wrong, so when I was told, I thought, ‘now I know what I’m fighting against’. Even as a doctor and someone who has studied RA, when you look it up on the internet, you of course automatically look at the ‘worst case’. I didn’t know anyone with RA or who talked about RA and I wanted to know what it was like living with the disease. That’s why I started working with the Arthritis Foundation and advocacy groups because I didn’t want people to feel that when they look up RA they always see the worst case. I wanted people to have different stories to read, be able to tell my story so people saw that for me, when I started responding to treatment, the pain started to go away, I felt a lot better. The problem with RA, is that you don’t often hear about the ones doing well. I wanted to be a different kind of story for people – to see someone who’s living with this disease, on TV, American Ninja Warrior, Celebrity Apprentice, to reach out to people to let them know they’re not alone. This disease doesn’t need to define who you are. So that’s been my motivating factor in sharing my story. These shows give me the platform to share that whenever I can. With the rise of social media, you really can reach out and find people – this opportunity didn’t exist 10-15 years ago.
You’re obviously quite ‘out’ when it comes to talking about RA. We seem to have a lot of problems in getting people to ‘come out’ and talk about it, especially celebrities like yourself. Why do you think people don’t want to talk about it?
I don’t know……. Having been a doctor and realising that disease doesn’t know any prejudice, to think people may think differently about me, well that didn’t even enter my mind. I understand why people may not be comfortable, ‘I don’t want people to look or think of me differently.’ I want people to realise that just because you have RA, your life doesn’t have to be limited, it’ll be different, just not limited.
What’s the awareness like in the States – do they know about RA?
I think when I say I have RA, they think OA, people think - ‘you play sports…. that’s where you got it’. Or rheumatism…. a disease from the 1800’s! Typically, I have to explain and I’m happy to do that. Whatever stereotypes or preconceptions you have about this disease, we want to challenge it.
At the time of your diagnosis, what support was there for you?
My family were in Colorado and I’m in Hollywood, so my support system was stand-up comedy. That’s what I used to cope with the disease day to day. As I felt my body deteriorating, what really kept me going was getting on stage, telling jokes, making people laugh, being around others who would make me laugh and that was the thing that emotionally helped me deal with it. RA is the hardest thing I’ve ever been through, so once I was diagnosed, my family were great. But it’s really helped to find and talk to like-minded people. Practical stuff like medication or logistical stuff like ‘how do you manage when going on holiday?’ Initially for me, turning to the Arthritis Foundation really helped.
Can I ask what sort of treatment you’re on at the minute?
Sure. I’m on an immune system modifier, Remicade, methotrexate, which I’ve been on since the start and fortunately responded to well. I was diagnosed Christmas 2002 at my dad’s in Colorado, one of his friends (a doctor), diagnosed me. They looked at my x-rays and said that I was having some pretty aggressive erosive changes, so they started me on methotrexate straight away. In 2007 they discovered a malignant tumour on my kidney. So I couldn’t go back on my RA meds until my Oncologist and Rheumatologist signed off on it. They talked about side effects and it looked like there was no correlation between the meds and the tumour. I said ‘I don’t care if there is’, I would rather go back on my RA meds and risk having cancer than know what would come with untreated RA. I didn’t want to look to THAT future again, so I thought I would rather risk cancer than go back. There was no correlation, so there was no problem going back on it, but it really was one of those moments when you look at the devil you know and the devil you don’t know!
One of our members has asked if your methotrexate causes you ‘brain fog’?
I don’t know if I can blame the methotrexate for that! With American Ninja Warrior, I’ll be talking for 12-14 hours whilst we’re shooting the show. I’ve done stand-up where I’m entertaining a room for an hour, so mentally I feel sharper than ever. I haven’t experienced ‘brain fog’, but hey, talk to my friends or family, they may tell you differently!! What’s great is that we’re living in an amazing time. I was diagnosed in 2002 and the treatment I’m on was approved in 1998. These biologics really were the silver bullet for RA, they really advanced treatment, and I think, what a fortunate time for me to get a disease when these treatments are out. When I go to meetings and see people diagnosed before these treatments or perhaps haven’t responded well to treatment, I think what could have been. It’s such a promising time for us and advocacy groups like NRAS involved in research, raising money, raising awareness. There are more options out there and more to come.
Your job is so unique, has it posed any challenges? I know you used to work out at Gold’s gym and you still look fit, have you had to make any compromises that way?
Yeah, because of the changes in my feet I couldn’t jog, play basketball, do high impact sports - actually I’ve just had surgery and I’m in a boot right now. I went from lifting weights, jogging etc, to pilates and yoga. I still work out, you can still do something and I think if you’re battling something like this, activity becomes more important. Finding whatever it is you can do, be it standing in a pool and moving your arms to music, I truly believe that the more active you are the better you’ll be able to combat your disease. Since getting RA, I’ve never been busier, this has never impacted me. I can shoot 6 nights in a row, I’m there and ready to go so I feel like career-wise it hasn’t held me back, if anything it’s given me more motivation to say it’s not going to slow me down.
Have you ever experienced any prejudice?
Nothing I’ve ever been aware of. To me it garners respect. I try to lead a ‘normal life’ - inevitably the RA sometimes comes up in conversation and people are surprised, which I love. I love that looking at me you wouldn’t know. And that’s the thing, for us to say, ‘yeah I have RA’, but you wouldn’t know it because I’m leading a great, active life. If I did experience prejudice I think I’d be so stung by it. ‘I had cancer, would you look at me differently.’ I’m confident about RA and always happy to share my story and proud to have done all I’ve done. I have such respect for kids living with this disease because I know how hard it can be.
So, what advice would you give to kids living with RA or JIA, or what advice would you give your younger self?
I think to never let this disease define you, you may feel it’s placing limitations on your life, but try things, try and do things you think you can’t do. You may be surprised at what you can accomplish. Go seize life, let this diagnosis be a wake-up call as to how precious life is and to not focus on what you can’t do but what you can do.
Some people see this an ‘old lady’s disease’, what are your thoughts?
You know that people take your cues from you, so how you act around people will. So, the easiest way for me to deal with it was through comedy, to disarm people and say, ‘I’m ok with this’. ‘I can laugh about this, so you can too’. Sometimes you feel people want to wrap bubble wrap around you. I don’t want people to feel sorry for me. Only you can tell people how you want to be treated so you need to act the way you want to be treated.
That’s a brilliant outlook and I guess not everyone can feel like that, especially in the early days it’s really hard.
Yep, it’s often easier said than done, but it’s really down to you – don’t give up that power.
On fatigue, how do you manage the flare ups and fatigue that can strike without warning?
Well you need to take care of yourself first. Know when you can’t do something, that’s ok, take time, don’t punish yourself, say NO to things. The more active I keep my body, the better I feel - good sleep, rest and hydration are important, but find things that energise you. Be that physical fitness or hobbies. When I feel run down and fatigued, finding something that energises me – a nap, a great song, a show, something that makes me laugh is great. It’s ok to place yourself first. It’s ok to ask for help from your kids and family. Ask for tips and solutions on the internet, even in Siberia you can find answers!! Find people that have felt the same way.
Has RA held you back?
I can’t do basketball or jog anymore. It hasn’t held me back it’s changed things. Which is ok. RA has challenged me, but life can go on with this.
We’ve got some slightly off topic questions Matt…….
Given your love for film roles, if you could have a super power what would it be?
You know I would go for the power of flight. With the traffic in Los Angeles it would be so much better to fly. I like the idea of changing perspective, getting above it all. In LA there can be so much ‘navel gazing’, get above it all and be reminded we’re all part of a bigger picture. We’re all struggling with something; be it a chronic disease, or an emotional issue, relationship problems, job worries, everyone has their struggles. So, to not feel so alone in your battles and see there’s so much awesomeness out there, I’d love to be able to fly.
So, you’d rather fly than be a ninja is that what you’re saying??
Having tried being a ninja, I think it’s more likely I’ll fly than be a ninja! The competitors on my show make it look so easy.
Have you got any guilty pleasures?
Oh yeah - McDonalds, Michael Bolton music, Richard Marx, naps. Although, you know what, I don’t know if I feel guilty about any of those. Having gone through being a doctor to stand-up to being diagnosed with RA, to having cancer, there’s not much that I feel guilty about doing. Life is about finding the things that make you happy. For me, having a job I love, being in front of a crowd, in front of a camera making people laugh is the most amazing feeling.
We need to bottle Matt Iseman and sell him as a treatment! Is there anything that keeps you up at night? Is there anything that stresses you?
As you get older you start to think about family etc, both my parents have health problems and that’s when you realise the fragility of life. I’m about to turn 46, I want to make sure I step back every now and again and see what I’m doing. I’m working with Arnold Schwarzenegger on Celebrity Apprentice - Terminator 2 is my favourite movie and I’m like…I know this guy, and now he knows me!! I just make sure I don’t get caught up, I get perspective. That’s what keeps me up, making sure I’m not missing these great moments or I’m not getting caught up in my own struggles or issues.
Have you got a life motto or mantra?
When I left medicine and decided to try stand-up, I told my Dad (a Professor at the University), whose footsteps I’d followed, that I was going off to do something completely different, I was terrified that I’d disappointed him or feel I’d let him down. And do you know what he said? He said, ‘life is short, do what makes you happy!’ That gave me permission to pursue the things that made me happy. It’s a simple phrase. Make sure you find that thing that lights the passion.
A lot of people will see this and read about you and no doubt get a lot of inspiration from you. Who inspires you? Who do you look to for inspiration? If you could invite 3 people to dinner (dead or alive) who would they be?
It’s constantly changing and I love creative minds.
Bill Burr – he’s a stand-up comedian at the minute; grumpy, misanthropic guy, but I love his take on life. This anger that he conveys is so out of perspective but I love his passion and I respect that. I’m always fascinated by people who’ve reached the top of their game. I love the Denver Broncos; John Elway was a quarterback. He went from playing the game to managing a team which is a major transition and really hard to do in this game. I admire people with that willingness to reinvent themselves. Donald Trump – it’s so fascinating watching this guy go from a reality star host on my network (NBC) to the guy in the White House! He’s such a polarising figure. The confidence this man has, who knows what’s going to happen. But I’m fascinated to see what really motivates him, what is he saying that he truly believes and what is he saying to get a reaction? He’s blended pop culture, celebrity and politics, everything is becoming entertainment. To see what’s really on his mind would be a fascinating dinner.
Wow I’d love to be a fly on the wall at that dinner party
Wouldn’t you just love it? No cameras; ‘this will never leave the room, what do you really believe? What’s really true here?’
Have you got any ‘can’t live without’ things?
Twitter, I love 140 characters! I love to be able to connect with people instantly. Every tweet I get I read, I may not respond, but I do read them. I love that 10 years ago, a celebrity would be someone you would never have had access to and now you can spark a conversation with them. What a tool we have with social media. You can get lost in it though.
What do you do when you actually get spare time?
I love to travel. See friends and family.
Thanks, this has been brilliant. So we know it’s your birthday in a few days, what will you be doing?
One of the guys I’m on the show with Chael Sonnen is a UFC fighter, he has a fight so we’re going to his fight and then just eat cake and be with my girlfriend!!