Imagine Dragons frontman raises awareness for ankylosing spondylitis with 'Monster Pain in the AS'
Dan Reynolds, lead singer for the Grammy Award-winning band Imagine Dragons, never wanted to talk about his diagnosis of ankylosing spondylitis.
He thought it was embarrassing, and the perceived stigma of having an autoimmune disease made him insecure. For years, Reynolds kept his diagnosis secret from everyone except his wife, his family and his bandmates.
“Nobody wants to talk about having a disease — at least I didn’t,” he told Healio Rheumatology. “But it also played such a huge factor in my life. I would have to cancel shows sometimes, and I was dealing with constant pain. I already dealt with depression since I was young, and it only made that issue worse. It became so overwhelming for me that finally I spoke out about it.”
Reynolds publicly announced his diagnosis in 2015, on stage in front of a mass of fans at the First Direct Arena in Leeds, England. Soon after, he partnered with Novartis’ “ThisASLife” program to raise awareness of the disease. However, as he became more involved in the community of patients with autoimmune disorders, he wanted to do more to help people with undiagnosed AS get the care and treatment they need.
To that end, Reynolds, in partnership again with Novartis and the Spondylitis Association of America, this year launched “Monster Pain in the AS,” a website designed to not only raise awareness of AS, but also, through a questionnaire, help individuals determine if they may have the disease and find a rheumatologist in their area.
“Before my diagnosis, it was so bad that I sometimes I could not move on stage,” Reynolds said. “I remember playing a show in Arizona where I just stood stiff as a board at the mic, because any movement hurt. Singing hurt. Exerting any motion or physicality was extremely painful. But now I can live a healthy, strong life and do the types of things that I want to do. It hasn’t held me back in achieving the things I want to achieve. I want that same thing for other people. I don’t want anyone else to go through what I had to go through before I was diagnosed.”
Before the diagnosis, a year of pain
Reynolds, now 31 years old, found himself in his early 20s with an abundance of lower-back pain, but few answers. Imagine Dragons was just beginning to grow in popularity, and the still-unsigned band was about to embark on a rigorous tour schedule. Often during this period, he and his bandmates essentially lived out of their tour van.
It was at this time that Reynolds began to lose mobility, for seemingly no reason.
“It really seemed out of nowhere, not from any sort of injury, so it was very confusing to me,” he said. “I went to a lot of different doctors, was diagnosed, misdiagnosed, several different times. I was put through a lot of different tests, referred to a different doctor, and the expenses really added up quickly. I was put through a pretty horrible cycle that I’m sure many people have been through, where you just continue to be in pain, and continue to not have any answers.”
That cycle continued for a year before Reynolds finally saw a rheumatologist. He was diagnosed with AS, a disease he had previously never heard of, and placed on a treatment plan that included exercise, diet and medication.
According to Reynolds, it completely changed his life.
“It saved my life, and my career,” he said. “I owe so much to that rheumatologist, and to all the people who are on the forefront of AS. There are millions of people who have AS and tons who are undiagnosed and don’t know it.”
“My goal now is to use the platform that I’ve been given to raise awareness and to make it not a hidden disease but a known disease,” he added. “That is what ‘Monster Pain in the AS’ is all about, and why this campaign is so important to me.”
Taming the monster
At the “Monster Pain in the AS” website, located at monsterpainintheas.tumblr.com, individuals can find information on back pain — both mechanical and autoimmune-related — as well as on the treatment and management of AS. However, its most notable feature is a 3-minute questionnaire, based on medical data and the ASAS criteria, which people with unexplained back pain can take to help determine if they should see a rheumatologist.
In addition, if the quiz results show that the patient could potentially have AS, it helps the individual connect with a rheumatologist in their area.
According to Suleman Bhana, MD, FACR, a rheumatologist based in Middletown, New York, who partnered with Novartis to help promote “Monster Pain in the AS,” the questionnaire was designed to ask the sort of questions a rheumatologist might when searching for a diagnosis. This, he said, could be helpful for people who, for whatever reason, have not been able to visit a rheumatologist.
“This is a campaign that is meant to raise awareness for AS and related rheumatic diseases, by helping people that would not normally be seen by rheumatologists early on find a way to get their symptoms evaluated in a very easy to digest 3-minute quiz on a website,” Bhana told Healio Rheumatology. “By using that quiz, they can see if their symptoms match up with inflammatory back pain, and if they do, help them find a way to connect with a rheumatologist.”
According to Bhana, AS can be challenging for patients and providers alike, as it so often presents as back pain, which is among the most common pain complaints in medical clinics across the country. Separating patients with mechanical back pain from those with inflammatory back pain can be challenging for rheumatologists and nonrheumatologists, he said.
At the same time, early diagnosis and management is particularly important in AS. If left untreated, the disease can become dangerous and cause fusion of the bone.
“Many of the people who complain about back pain may not see a rheumatologist as their first entry into the medical system,” Bhana said. “So, how does a practitioner receiving a patient with back pain react? They have to quickly, in their head, think about whether it is common, mechanical back pain or something more inflammatory, and whether they should be referred to a rheumatologist and not necessarily an orthopedist or a podiatrist, or a physical therapist. We’re trying to use the medical system as a kind of sifter to sift out these patients.”
Bhana added that rheumatologists can also use the “Monster Pain in the AS” website to possibly review targeted questions regarding inflammatory back pain. For other physicians, the website could be used as a tool to help identify possible AS early and refer such patients to a rheumatologist as quickly as possible.
“Access to rheumatology care is not so easy in some areas of the country,” Bhana said. “This can at least get that ball moving, to get a diagnosis faster and start treatment quicker.”
A more holistic approach
According to Bhana, AS must be treated holistically, with a focus not just on medication, but also diet, exercise and lifestyle. Rheumatologists should aim to establish a working relationship with their patients and take a “360-degree view of their symptoms,” he said.
“It’s important for a patient with AS to have a long-term established relationship with a rheumatologist, someone they trust in a partnership,” Bhana said. “This is an ongoing, involved process that has to start some place but then evolve over time to target individual symptoms and screen for related conditions.”
Reynolds stressed that this aspect of his care — dedicated, personal treatment from a rheumatologist — was key to improving his symptoms and quality of life. He described how his rheumatologist patiently described how his diet and exercise regimen would need to change and advised that his treatment would take more than just the right medication.
“That extra time and patience made all the difference, because anyone with AS knows that it’s really three things that have to be balanced in order to find some sort of remission — exercise, diet and treatment,” Reynolds said. “Taking the time to really go through that with your patient is so important, because all three, when done properly, that is when you really find balance in your life.”
According to Reynolds, that balance, combined with a rheumatologist who understands the importance of establishing a relationship with their patients, can mean the difference between a life marred by disease and one of fulfillment.
“This is something I’m going to live with for the rest of my life, because there is no current cure, but I can live relatively pain-free now because of my treatment plan,” he said. “It can allow a person to live a full life and do all the things they want to do.” – by Jason Laday
Disclosure: Bhana reports compensation from Novartis for working on the Monster Pain in the AS campaign.