This AS Life Live! is the first interactive online talk show for people with ankylosing spondylitis (AS) by people with AS.
The program is a collaboration between the Spondylitis Association of America, Novartis Pharmaceuticals Corporation, and Dan Reynolds.
The goal of the series, hosted by Dan Reynolds, AS patient and lead singer of the Grammy award-winning rock band Imagine Dragons, is to inspire and encourage people to live their best lives with AS and to raise awareness of AS. Imagine Dragons has a large USA and international fan base with extensive tours, TV appearances, awards and hits including Radioactive, Demons, Believer and Thunder.
With just the first 3 video interviews released in 2017, This AS Life Live! has reached over 500 million people on social media, and through print, broadcast, and online news coverage.
"Each person's story is unique. As we release more and more of these interviews, I hope that everyone living with AS will find something they can relate to and find value in watching and sharing. Dan has truly been wonderful throughout the series. He is friendly, thoughtful, empathetic, candid, lighthearted, just real." Rich Howard
SAA receives no government funding and relies on the
generous donations from individuals to create and maintain the programs and
services aimed at improving the futures of the 2.7 million Americans affected
By Phil Donlay & Esther Hickman
Monday, August 06, 2018
Imagine Dragons lead singer Dan Reynolds discusses living with spondylitis with novelist Phil Donlay and real estate agent/mom Esther Hickman
Dan: Welcome to This AS Life Live, which brings together people with AS to share our stories and inspire each other to live our best lives. Today I am meeting with Esther Hickman, a real estate agent and new mom and Phil Donlay, a novelist, to discuss how they navigate their professional lives with AS. With the band keeping me pretty busy these days, I can definitely relate to the struggles that people with AS go through, when it comes to working. So I’m looking forward to talking to both of them. Let’s go!
Dan: So thanks for joining me today, guys. First and foremost, I would love to get to know you a little bit, just a little bit about your personal lives.
Esther: I’m a real estate agent, and I just am a first-time mom, and I have an 8-month-old baby.
Dan: Okay and where are you from?
Phil: I grew up in Kansas, and for, and then traveled everywhere. For 30 years I was a professional pilot. Been to 40 countries on five continents. And AS forced me to leave that behind, and so for the last 10 years I have been a novelist.
Dan: Can you remember, uh, the first time that you felt the symptoms of AS?
Phil: I woke up, and I had full-blown iritis in one eye, with no warning. I had never had that, I didn’t know what it was.
Ester: When I was 25, and the first time I had a very overt situation, was just waking up one morning and not being able to walk properly and just having the pain in that whole sacroiliac…
Dan: In your hips.
Ester: … yes, and just having your legs not do what they’re supposed to do. And, so I went to, um, an eye clinic in New York and I had that extreme eye inflammation, and they tested me for the HLA-B27. And they referred me to a rheumatologist, and I have to say I was very relieved to get a diagnosis.
Dan: Same thing. When I finally had somebody say, “This is what it is,” I was like, felt valid, finally.
Dan: Walk me through the actual point of diagnosis, when you actually went in to a rheumatologist.
Phil: I had started, through a lot of different channels, to try to find out why I was so fatigued. And it wasn’t until I did a sleep study and they looked at the sleep architecture, and the neurologist said, “This is very characteristic of chronic pain.” That sent me to a rheumatologist, didn’t take very long at all to diagnose me.
Dan: Has AS kind of got in the way of work?
Phil: It was a hard time. It was a hard time to find out that you’re sick, and find out that I’ve lost my career and that I’ve lost my job. So it was a difficult time. It ultimately forced me out of the cockpit.
Dan: So what did you do from there?
Phil: I had written and published two novels before then, and, I thought, you know, that’s my next best passion, besides airplanes.
Phil: I thought that my worst fear was going to be not being able to fly. I’ve been doing it since I was a kid. And once I faced that fear, and was able to focus on what I’d gained from that instead of what I’d lost.
Dan: So, Esther, tell me a little bit about how AS has affected your work, if it has.
Esther: I would always work in offices and had a regular corporate schedule. So, it definitely is not an ideal environment in terms of, that was in the early 2000s before everyone’s kind of like putting in standing desks and, exercise balls to sit on…
Esther: … and stuff. So I really would just kind of treat and manage things along, and obviously just cope. And then, um, and then I moved into real estate, which is much more of a mobile, um, profession, and also, um, had the ability to make my own schedule.
Esther: Since the diagnosis, it’s given me permission to not say yes to everything, and that I have permission to rest, and I have permission to say no to, like, yummy things like cake and wine.
Dan: How do you explain your AS to your coworkers, to, um, employers, to supervisors, um, do you?
Phil: I think there’s times you have to let people know.
Phil: I deal with a publicist and a publisher and an agent. They all know.
Esther: I certainly am not private about it. Uh, in my twenties and thirties, because it was a different time in terms of, um, the AS awareness. There’s been so much progress. And so at that time it was just ridiculous to talk about it, because I looked like a healthy young person and I wasn’t diagnosed with anything significant. But now I feel like I can just say I have AS.
Dan: What advice, tips, would you give to other people who are kind of maybe newly diagnosed, or have been diagnosed for a long time and having a flare-up?
Phil: The faster you realize that the, that there’s a new normal in town, I think the better you cope. And, um, the better you can just say, you know, my job today is to just lay on the couch, because I feel horrible.
Phil: But it’s, I think it’s essential, and to give yourself the break, you know. Just, just be kind to your body and your mind, if you can.
Esther: Yeah, I think, um, to learn everything that you can about the illness and what other people have been doing, and certainly just to tackle how you want to manage your life and your work life, um, from every angle. There’s limitations that you have to accept, but you can make choices and have a full life.
Dan: Totally. Well, you guys, thank you so much for being here on This AS Life Live.
Phil: Thank you.
Dan: Phil, it was a pleasure.
Phil: Take care.
Esther: Thank you.
Dan: Here are some tips about AS and work, that may help. Plan your time wisely. During an AS flare, take your time. Make space for breaks, and focus on quality, not speed.
Dan: Work around your condition. If you work in an office, you can propose other solutions to your employer like: Flexible hours. A laptop, to let you work from home on flare days, or ergonomic furniture.
Dan: I'm off now to meet with someone else, to learn about their AS life. As always I encourage you to visit ThisASLife.com for other episodes and share them on your social media.
Dan: Take care.
Other posts by Phil Donlay & Esther Hickman
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