I have noticed when Imagine Dragons’ Dan Reynolds is in pain on stage. I see it surface briefly in the form of a grimace with pained eyes, a determined glare into space, or a barely detectable stretch after standing at the microphone for too long. I’ve said to friends, “He’s in pain right now.” Then I blink, and the moment is gone.
I know what Dan’s pain feels like. I know because I have the same disease he has, the one with a name that sounds like a dinosaur: ankylosing spondylitis.
I, too, have learned to mask my pain in public.
Ankylosing spondylitis (AS) is a systemic immune-mediated inflammatory disease that causes pain & stiffness primarily in the spine and low back, but it can also impact other joints. AS can damage the eyes, heart, and lungs; as well as cause fatigue and cognitive impairment. The disease is difficult to diagnose, often missed or misdiagnosed by doctors for years, and it impacts everyone differently. There is currently no cure.
For most observers, Dan looks the perfect picture of health; he posts regularly about his fitness journey, and mainstream media encourages that perception. One might think he has conquered AS and that perhaps everyone with else AS would feel great if they just copied his approach.
I had the chance to interview Dan about living with AS in 2017 for This AS Life and again in 2019 to learn about his new project, the Monster Pain in the AS campaign. I discovered in both interviews that his journey with AS is more multifaceted than mainstream media suggests.
For one thing, ankylosing spondylitis is not the only disease that affects Dan. He has been vocal about living with depression for years and he also has ulcerative colitis (UC), an inflammatory bowel disease. He says his UC “flares up still to this day.” Being open about how these diseases have affected him and others is part of why he became the poster child of two AS awareness campaigns. “Destigmatizing what it means to have an autoimmune disease or AS or ulcerative colitis, that’s important to me,” he says.
During our conversation, Dan shed light on what he experienced before being diagnosed with AS. He recalls it being “the most frustrating and scary time of my life.” He was “an uninsured, broke musician living in a studio apartment” and his six month old daughter was sleeping in a closet. Dan remembers every doctor appointment and test causing fear because he had no money – his voice even raises slightly when he recalls that time in his life.
He doesn’t want that to happen to others, which is why his goal “is to make AS mainstream, make it more known, so that people don’t go through misdiagnosis after misdiagnosis and how frustrating that can be – and hopefully get in to a rheumatologist and be diagnosed quicker.” Currently, the average delay before receiving an AS diagnosis is reported to be more than seven years, but for women and people of color it can take even longer.
In addition to how difficult it can be to get diagnosed, Dan spoke to a lack of reliable information on AS online, the plethora of DIY treatments touted, and a common (mis)perception that there is some sort of AS treatment protocol that works for everyone:
“I wish there was some one-size-fits-all, ‘here’s to health’ guideline, ‘here’s to treatment,’ ‘here’s the exercises that will heal you.’ Anybody who says that is under-informed. That was actually one of my biggest frustrations when I was first diagnosed, was Googling Ankylosing Spondylitis and people who said, ‘If you cut these things out of your diet and do this or that exercise regimen or take this medicine, it’ll fix you.’ That is just false, and it’s frustrating, it’s just a false narrative.”
Now, Dan has a handle on how AS affects him – it mostly causes him pain and inflammation in his SI joints, feet, ankles, heels, and big toe – and he relies on his rheumatologist and a treatment plan to help manage flare ups, but they aren’t always manageable. He admits, “I had to cancel a show within the last year because of a flare up. So it’s still something I struggle with and am always trying to combat.”
I asked Dan if he agreed with the suggestion that he has conquered the disease. He was quick to deny the idea, saying, “It would be a false narrative to say that I have conquered AS at all. I still have flare ups, I still have bad days, and it’s a progressive disease so people are at different stages at different times of their journey.”
Further, he says, “Everyone needs support, they need family and friends to understand that this is not a disease with a cure, it is not a disease that has been conquered. I hope their family and friends can […] understand that it is a progressive disease and it’s different for everyone. And some people are just at different points. We could be talking next week and I could tell you, ‘Hey I’m in a really bad place, I’m in a flare up, I can’t get out of bed.’ That’s still a reality for me, but because I have a rheumatologist and a treatment plan there are steps that I can take to get me out of that funk. But that doesn’t mean that it’s not gonna come again.”
I asked what others can do to help raise awareness. He told me what he wished had happened when he was seeking answers, “I really wish someone had just posted, literally, on their social media, ‘Hey, I struggle with ankylosing spondylitis.’ Even just saying, ‘I have back pain issues,’ or ‘I have inflammation issues. If you do too, take this test to see if you possibly have ankylosing spondylitis at [the] Monster Pain in The AS [website].’ If I had taken that test I would have avoided like three or four misdiagnoses from different doctors.”
Dan hopes more people will begin to share their realities with AS to raise awareness and reduce stigma. He says, “I think it’s so important to share posts of having a hard day, and saying, ‘You know what? This is what I have, but it’s not going to defeat me and it’s part of my journey.’ That is so important for the other people to see. Way more important than your perfect time at the beach, not that you shouldn’t share that as well.”
The reason Dan began raising awareness was not to prove you can conquer AS, but rather to help people get diagnosed and begin treatment sooner so they are more likely to get the disease under control. He’d like people to have more good days than bad days, which he believes is possible with a treatment plan and a rheumatologist, but he also acknowledges that the disease is progressive and everyone is at a different point with it.
Overarchingly, Dan leans on the importance of raising awareness about AS, but he also stresses the need for community and support. “Everyone needs support, they need family and friends to understand that this is not a disease with a cure,” he says, encouraging family and friends to “understand that and have patience with them, as my family and friends try to have the patience with me.”
One of his support groups is his family; he regularly meets with his brothers, several of whom also have AS, to check in about their last flare and how they are managing the disease. For others living with the disease, the Spondylitis Association of America sponsors patient-led support groups across the United States, and there are dozens of Facebook groups that serve as online support communities for people living with the disease. But for Dan, his main focus right now is spreading word about the Monster Pain in the AS campaign, which he hopes will help more people get diagnosed sooner.
One of the final messages Dan wanted to share is a message directed to the entire AS community:
“There’s not a cure that I know of for AS and so that’s why it’s so important we just rally together and stay strong as a community and support each other and give love and empathy to each other because it’s hard. AS is a pain in the ass. It’s a pain.”
Bonus! What was I listening to while writing this article? Dan’s Monster Pain in the AS Spotify playlist filled with songs that have helped him deal with pain and keep his head up on the road.