Leading Indicators for Why Rheumatoid Arthritis Is Misunderstood

People living with rheumatoid arthritis (RA) often feel misunderstood, according to findings from Rheumatoid Arthritis In America 2018, an annual research study conducted by Health Union.  The study of 3,181 respondents illuminates the realities about the various misconceptions that exist around RA.

“People don’t understand that RA is an autoimmune disease, not just arthritis,” one survey respondent writes. “There’s SO much more involved.”

Many people with RA feel the frustration of not being understood from the very beginning of their journey—and not just by friends, family or coworkers, but also by healthcare providers. According to the survey results, 79 percent of people had to see more than one doctor before receiving an RA diagnosis and 45 percent of respondents had been originally misdiagnosed.

After years of symptoms and misdiagnoses starting from the age of six, Tamara Haag, a RheumatoidArthritis.net writer and contributor, was finally diagnosed at 22 years old. “I’ve spent most of my life trying to see the silver linings of having a chronic condition,” Haag writes in her 2017 post, “Sometimes I Have Only Hate for RA.” As a contributor to RheumatoidArthritis.net, Haag regularly shares her experiences and offers support, validation, and information to others who are looking for a community that understands what it’s like to live with a chronic illness like RA.

While 97 percent of the survey respondents regularly see a healthcare professional for their RA, their relationship with their HCP may play a role in their feeling of being misunderstood as only half* of surveyed patients regularly discuss their quality of life on their current treatment plan with the HCP.

To fill these needs, people often turn to online resources as an alternative. More than half of the survey respondents say they use online resources like RA-specific websites or internet search when seeking information on a range of topics including coping with RA flares, pain management, and medications and treatments.

In these moments, a lot can be learned about the person’s unmet needs, offering industry an opportunity to uncover insights, as well as “be there” in those moments when treatment decisions may be top of mind.

Communication barriers may also be why only 15 percent* of patients feel their RA is under control with their current treatment plan, and 28 percent were not at all satisfied with their current quality of life. Open communication from the beginning of a patient’s journey allows HCPs to understand the importance of listening to patients and not underestimating the quality of life concerns that affect satisfaction with treatment and treatment decisions.

*Top 2 box on a 7-point scale.