Health Union’s latest survey found that more than eight in 10 people (85%) diagnosed with a form of arthritis say it is difficult to explain their “invisible” symptoms to others.
The survey, “Rheumatoid Arthritis In America,” included 3,607 participants and was conducted between June 1 and 28, 2017.
“Pain and fatigue are not always obvious,” Kat Elton, a RheumatoidArthritis.net (Health Union’s RA community online) patient advocate diagnosed with juvenile rheumatoid arthritis at age 2, said in a press release.
“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,” Elton added.
Juvenile arthritis (JA) is the term used to refer to arthritis in children under 17, and certain symptoms are similar to those described by rheumatoid arthritis patients in the survey — inflammation, pain, swelling, and stiffness of the joints. JA and rheumatoid arthritis may also affect the lungs, heart, eyes, and other organs.
The most common symptoms among the survey respondents were fatigue (89%), painful joints (88%), and stiff joints (84%). Other symptoms included soreness or aching throughout the body (79%).
Survey respondents also reported other symptoms such as reduced grip strength, difficulty sleeping, or anxiety and depression.
Furthermore, respondents said arthritis affected their lives in many ways, including their capacity to exercise or participate in demanding physical activity (70%), and their ability to do daily chores (64%). Social life and ability to work were also mentioned as being negatively impacted by their disease.
Seven in 10 survey respondents said that they were being treated with a disease-modifying anti-rheumatic drug (DMARD), and just over half reported discussing an additional medication with their healthcare provider within the past six months.
“Changing healthcare providers was a common theme among respondents,” said Tim Armand, president and co-founder of Health Union. “Our data shows that more than half of respondents had seen more than one rheumatologist over the course of their journey with RA [rheumatoid arthritis]. 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).”
Health Union prepared a short video to share the main results of the survey.
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