Survey Shows Rheumatoid Arthritis Patients Struggle to Explain Unseen Symptoms

— More than Half of Respondents Have Changed Doctors over Their Healthcare Journey —

September 13, 2017

More than eight in 10 (85 percent) patients diagnosed with rheumatoid arthritis (RA) said they found it difficult to explain the “invisible” aspects of the condition to others, according to Health Union’s latest “Rheumatoid Arthritis In America” survey.

“Pain and fatigue are not always obvious,” said patient advocate Kat Elton, who also took part in the survey. “That’s one of the biggest challenges people have around explaining their disease. So many people will hear you and say ‘You look good’ but not understand how you actually feel.”

While symptoms often include inflammation, with pain, swelling, and stiffness affecting joints throughout the body, rheumatoid arthritis (RA) can also affect the lungs, heart, eyes, and other organs.

The most common RA symptom reported during the past month by respondents was fatigue (89 percent); followed by painful joints (88 percent), stiff joints (84 percent), and general stiffness, soreness, or aching throughout the body (79 percent). Respondents also reported many symptoms that go beyond painful joints and stiffness, saying they had experienced reduced grip strength (70 percent), difficulty sleeping (67 percent), cognitive impairment (54 percent), and anxiety or depression (53 percent).

Survey participants said RA affected their lives in a variety of ways, including the ability to exercise or participate in physical activity (70 percent) and fulfill family or household duties (64 percent). Other areas negatively impacted by the condition were social life and activities (59 percent) and their ability to work (55 percent).

Recent discussions with healthcare providers focused on quality of life with current medications (62 percent), managing flares (59 percent), and disease progression (57 percent), survey participants said. Seven in 10 respondents indicated they were treating their RA with a disease-modifying anti-rheumatic drug (DMARD) and 54 percent of all patients surveyed reported discussing an additional medication with their healthcare provider within the past six months.

“Being part of this survey helps you see where you’re struggling and gets you to ask questions like ‘Am I really satisfied with my treatment plan?’” added Elton, who was diagnosed with juvenile rheumatoid arthritis at age two.


“Changing healthcare providers was a common theme among respondents,” explained Health Union President and Co-Founder Tim Armand. “Our data shows that more than half of respondents had seen more than one rheumatologist over the course of their journey with RA. In some cases, patients didn’t find their doctor to be helpful (31 percent) or felt their questions or concerns were not being addressed (30 percent).”

The online survey of 3,607 qualified individuals was conducted June 1-28, 2017 and was released through Health Union’s online community, A series of infographics depicting the survey results are available. Additional survey details may be provided upon request; email