The Imagine Dragons lead singer talks candidly about his experience living with a painful ‘unseen’ autoimmune disease, ankylosing spondylitis, and raising awareness by raising his voice.

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Imagine Dragons lead singer Dan Reynolds. Image courtesy of ‘Monster Pain in the AS’

In 2015, Imagine Dragons front man Dan Reynolds took the mic in front of a stadium full of adoring fans. No, he wasn’t about to perform one of his band’s hits. Instead, he was getting ready to make a personal, vulnerable admission.

Reynolds was suffering from the chronic pain of ankylosing spondylitis (AS), an autoimmune disease that is a type of arthritis of the spine. He was ready to share his status with the world.

“This is the truth, I’ve never said this publicly ever, and I’m just going to say it tonight it because it’s just part of my life now. Does anybody out there suffer from any disease? Nobody wants to raise their hands,” Reynolds said to a few laughs and cheers.

The audience was hanging on every word. “I have something called ankylosing spondylitis. It’s an autoimmune disease. I’ve never spoken about it because, to be frank with you, I’ve been embarrassed. And tonight I’m gonna share it, because there’s probably other people out there who suffer from it, too.”

It was a big admission for Reynolds. Until that night at Leeds Arena in West Yorkshire, England, as part of the band’s “Smoke + Mirrors” tour, he’d never come forward with his diagnosis. Now, he was making himself the face of a condition that affects millions but doesn’t stand as a recognizable name to the public at large.

“I was diagnosed with AS in my early 20s so I’ve been dealing with [it] quite a while. It’s been a frustrating process and also educating for me, I guess. Not a lot of people know about it. It’s super hard to pronounce. It’s such a hidden disease that hasn’t been in the mainstream,” Reynolds, 31, told Healthline. “Finally, I spoke up about it at my show, and basically said, ‘well, this is part of my life.’ I wanted to start to live a little more, just be a little more human. It’s a big part of my story.”

Reynolds is currently serving as the face of Monster Pain in the AS, an ankylosing spondylitis awareness campaign from Novartis Pharmaceuticals.

Reynolds said that using his celebrity platform to “bring AS to the mainstream” was important to him because it demystifies a less-acknowledged disease and gives other people with chronic pain a sense that they aren’t alone.

Symptoms of AS include intense swelling, heat, redness, and chronic pain in the spine as well as the area where the bottom of the spine and the pelvis meet, according to the National Institutes of Health.

It tends to impact men more severely and runs in families.

The back pain and stiffness most typically associated with the condition tend to start in late adolescence or a person’s early adult years. As time goes on, it can fuse a person’s vertebrae together, limiting movement, the American Autoimmune Related Disease Association reported.

Dr. Suleman Bhana, a rheumatologist at Crystal Run Healthcare in Middletown, NY, who has been working with the campaign, told Healthline that the condition is less rare than many people think.

He said AS affects about 2 million people throughout the United States, but that number could be even higher, as many people who have it might not even realize it.

“It’s not as easy as diagnosing something like appendicitis. This requires a lot of thought of where the pain is originating from. It can affect the whole body, not one organ, specifically,” Bhana explained. “We look at the whole body and see where joint pain may have a connection to eye symptoms and skin symptoms and bowel symptoms. Arriving at a diagnosis may take time… before a person can put a name to what is going on with their body.”

Reynolds recalls the first time he experienced unexplainable pain in his early 20s. He remembers going hiking along a canyon in Los Angeles and feeling a deep, stabbing pain in his thigh joints and hips.

“It made no sense. I had no point of injury. Over the next week it got worse and worse. At nighttime it was bad. Then, in the morning, I would have bad morning stiffness for hours, to the extent where I wouldn’t want to get out of bed,” Reynolds recalled. “I had X-rays to figure this out — this was before our band was even signed. I remember living in my studio apartment with a wife and a baby and no health insurance. It was a really scary time.”

Reynolds saw a revolving door of doctors. Different conditions were ascribed to his pain. He said it took a year of trial-by-error attempts to figure out what was wrong before he found a rheumatologist who diagnosed him. He was 24 when he was able to definitively say he had AS.

Reynolds said he immediately felt better finally being able to put a name to his pain.

“You would think it would be a scary, overwhelming feeling when someone says you have an autoimmune disease. It really was a relief. The rheumatologist made me feel good, [told me,] ‘hey, we are going to sit down, get a treatment plan,'” he said. “Within a week, I was feeling better. This was after over a year of debilitating pain with no results, doctor after doctor.”

Reynolds’s experience isn’t uncommon, said Leonard Calabrese, DO, director of the R.J. Fasenmyer Center for Clinical Immunology in Cleveland Clinic’s Department of Rheumatic and Immunologic Diseases.

He said that given how many people experience chronic back pain and inflammation in general, it can be hard to diagnose AS right away.

“It’s diagnosed with a combination of factors,” Calabrese, who isn’t affiliated with the campaign, told Healthline. “If back pain generally persists for greater than three months, if it’s worse in the mornings, then gets better, then inflames again — that inflammatory back pain is a cardinal symptom of ankylosing spondylitis. There are a variety of other manifestations as well, such as tendinitis and inflammation of the eyes. It’s quite systemic. The pain spreads through the body.”

Calabrese added that once AS is suspected, a person needs a proper evaluation, which may include a series of X-rays or an MRI of the back.

Reynolds — who also has ulcerative colitis — said that living with chronic illnesses requires a level of discipline.

To manage his AS, the treatment plan he and his rheumatologist devised consists of exercise and diet.

He has also found yoga to be a helpful way of getting blood circulating to parts of his body that might typically be painful or sore.

Reynolds is on an anti-inflammatory diet as well, having pinpointed that some foods tend to trigger his inflammation.

After adhering to this adjustment to his diet and exercise regimen for the past decade, he calls what he has a “low active disease” now. While he still experiences flare-ups and pain, he has been doing everything possible to live “relatively free of pain.”

Calabrese and Bhana both said that this kind of persistent pain management is the best recourse for people with AS. Currently, no cure exists.

Of course, when one leads a life on the road, finding the discipline to manage chronic illnesses can be difficult. Reynolds said that a job with high stress and lots of travel can lead to poor sleep and the temptation to eat unhealthily.

Earlier on in his career, when he didn’t have that much money, Reynolds said it was easy to fall into a trap of eating inflammation-inducing fast food.

“It’s a balancing act. I do have flare-ups if I’m not careful. I just have to keep it up,” he said.

Being a dad to three daughters has also influenced Reynold to be as healthy as possible. His life as a parent has caused him to use the privilege that comes with his international platform for good.

“I’ve found that there’s strength in numbers for the community of people who have autoimmune diseases,” Reynolds said. “What are you doing to help? When I spoke about AS on stage that time, it was a product of me being in the middle of a flare-up. I was in a bad place, playing a show overseas. I thought ‘I’m in a roomful of friends and fans, I’m in a lot of pain, this is why.'”

Allowing himself to be open about AS opened up a new community for Reynolds. He said that connecting with people, whether online in forums or on social media, or in person at concerts and events, is powerful.

What’s some key advice he’d offer others who are suffering from chronic pain and don’t know where to turn?

“I would just say if you have unexplained back pain like what I’ve experienced, stop Googling it,” he stressed. “A lot of people in the world think they’re doctors, everyone thinks they are doctors now, they go on Google for a diagnosis. I say that you see a rheumatologist, seek real help. No, you don’t have to suffer alone.”