I don’t always interview rock stars - it’s not really my thing. But this day was different. This was personal.
It was a chilly morning, much too early for my stiff body to roll out of bed. But this was a big day - I would soon be interviewing Dan Reynolds, the lead singer of Imagine Dragons.
“This wouldn’t be happening,” I thought, “if we didn’t share a wicked diagnosis.”
In late 2015, Dan announced during a show that he lives with Ankylosing Spondylitis (AS). A year later, he partnered with Novartis Pharmaceuticals Corporation and the Spondylitis Association of America (SAA) to launch This AS Life Live!, an interactive talk show for and by patients living with AS.
"I want to express how lonely it can be to trudge through life surviving a disease that people do not know about."
I spend substantial time and energy educating friends, strangers, and even doctors about my condition, which leaves little room for receiving compassion and empathy. AS is not a well-known disease, so for a celebrity to name it on stage is life-changing.
Ankylosing spondylitis is not uncommon. It is an extremely painful, severe inflammatory condition. In severe cases our spines can fuse together into rigid, fragile columns of bone. This happened to my own father, whose spine was completely fused at a 90-degree angle.
I had done some research about Dan before our conversation but was more interested in talking with him directly. What I found ahead of time is that we are the same age and ankylosing spondylitis runs in our families. What I did not know yet is that Dan is 6’5” and Imagine Dragons received a Grammy Award for Best Rock Performance.
His diehard fans are probably throwing popcorn at me right now.
I did not want this to feel like an interview so I broke the ice with a piece of my own history:
“So, I’m a model, and my first ever real fashion show was walking to ‘Radioactive’.”
Dan cracked a grin, “No way!” and high-fived me.
It turns out Dan and I have had many similar experiences – far too many to share in one article – so I will share three things that stood out during our conversation:
1) Ankylosing spondylitis runs in our families.
Two of Dan’s brothers have AS. Before he was diagnosed, Dan would take part in teasing them when they could not do certain activities. If one of them bowed out of lifting something, attributing AS as the reason, the other brothers would say, "That's called lazy man's disease, hahahaha.” So, when Dan was diagnosed, it felt like karma caught up with him.
Before his diagnosis, Dan had a lot of pain, but, he says, “I kept it to myself quite a bit too because it was like code of the brothers: don't complain to your brothers, complain to your mom.” At the same time, he probably would have waited longer for a diagnosis without his brothers’ help: “I had misdiagnosis after misdiagnosis, and then finally, my brother was like, ‘look, it's probably AS, go see this specialist’.”
The biggest difference between Dan’s story and mine is sex chromosomes. When I was younger AS was believed to be a man’s disease, so we did not seriously entertain the possibility that I could inherit it. What we know now is that AS is much more common in women than was previously believed.
"It took 13 years for me to be diagnosed. It took about 6 for Dan."
Ankylosing spondylitis is not purely genetic, though there are genes commonly associated with it. Many of us who inherit AS have experienced the moment after our own diagnosis when we realize everything we’ve seen our family member(s) go through is now our battle, too. This was the case for both Dan and me.
Dan has a young daughter and two beautiful newborn twins; I asked him if he is concerned they may inherit AS. He admits that he has thought about it quite a bit, but is optimistic about the future: “I think that by the time it comes on, it would be later in their life. I hope they'll have more management plans that work for people - I just don't want to be fearful about it.”
2) We have both found unwavering support that we don’t take for granted.
We discussed at length how Dan’s wife and bandmates have been supportive from the beginning of his diagnosis:
“They’ve seen me on my worst days, they’ve seen me on my good days, they’ve cancelled shows with me when I’ve needed to cancel them and never made me feel bad about it. Never once have they ever made me feel, like, ‘toughen up.’ ”
He holds onto enough stress for all of them, anyhow:
“At this point in my career it’s devastating to cancel a show. We’ll be in Poland, and we haven’t been there in two years and there’s 20,000 people there to see us and I’m – it’s all on me.”
Dan is working on getting some positive karma back from when he was tough on his brothers who have AS. He now works with them and says he is regretful about how he treated them before, “because now I understand they were in a great deal of pain mentally, physically. I mean, it is overwhelming to have that diagnosis on a lot of levels.”
Dan and I both recognize that we’ve been fortunate to have the amount and type of support we’ve received from those close to us. Without it, we don’t know where we would be. In Dan’s words, “When you have a disease it leads to a deeper compassion for yourself, for others… because when your health is gone, nothing else matters.”
3) We are committed to bringing awareness to AS through our passions.
Dan and I entered the advocacy world a bit differently. He’s, ahem, kind of famous, so he fell into the role of spokesperson simply by mentioning on stage that he had this disease. My path has looked quite different – after my diagnosis, I was open about my diagnosis with everyone around me, but my platform didn’t yet exist. What isn’t different, though, is our commitment to raising awareness about AS through our passions. For Dan, singing. For me, modeling and writing.
We both believe more people should feel empowered to share their stories, which we feel will raise awareness about AS, and, Dan says, “could open doors for relationships – friendships – and not just that, but really help other people feel comfortable to open up.” That’s why we both feel support groups, blogging and advocacy groups are so important.
The question I most wanted to ask Dan came in the form of a statement: “I don’t know if you have a goal for advocacy, for what you want to do. Mine is to make AS a household name.”
“Bingo.” Dan said, “I was just gonna say raise awareness for it, but that’s a better way to put it… I would say my goal would absolutely be to jump on your wagon. To raise awareness would just be huge.”
At the end of my time with Dan, it felt like we had become siblings - our mini photo shoot is evidence of that. Dan placed his hand on top of my head and rested his head against mine. Someone said, “Put your hand on his head too.” I did, and we laughed. Pictures continued as we goofed around and carried on our conversation between smiles:
“Are you 6’5”?” I guessed.
I had a sudden idea.
“So… I have this thing about picking people up.”
“You wanna pick me up?”
“Yeah. You ready?
I knew my back would retaliate later, but I didn’t want to miss an opportunity to lift up a new friend and fellow spokesperson for AS.
Afterwards I walked to a nearby coffee shop. As I sat down, an Imagine Dragons song, “Demons,” began playing over the radio. I chuckled to myself and listened to Dan’s voice fill the small room. When the song was over, I pushed play on my recorder to listen to the conversation we’d just had. An hour and a half later, as my laptop clicked shut, another Imagine Dragons song began. “I’m On Top of the World” serenaded me out the door.
I smiled. What a great analogy for our conversation that began with undertones of the demons we fight and ended with a shared goal to make AS a household name. I’m looking forward to what’s next for this friendship.
Charis Hill's travel to meet Dan Reynolds was sponsored by Novartis. The opinions and activities discussed in this article solely belong to Charis Hill.
This article was written by Charis Hill, with help from the resident experts at ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss.