Unlike the more common osteoarthritis, RA is an
autoimmune condition in which the body's immune system mistakenly
attacks healthy tissue. The inflammation from RA also attacks other
parts of the body including organs, bones, and soft tissue, such as
muscle, ligaments, and tendons.
‘In addition to physician-prescribed medical treatments, many rheumatoid arthritis patients use alternative therapies and make lifestyle changes to help cope with their unseen symptoms.’
Rheumatoid Arthritis In America 2016, a national survey by Health Union
of more than 3,100 individuals who identified as having rheumatoid
arthritis (RA), reveals that initial symptoms are often invisible to
others, with respondents experiencing more than six on average.
Among people with RA who took the survey, receiving a
diagnosis often proved difficult with the average time between initial
symptoms and diagnosis spanning four years. In addition, people with RA
note feeling stigmatized for often not looking sick and the
unpredictable nature of the health condition.
Because RA attacks the body internally, many of the symptoms are
unseen. 87% of respondents reported painful joints, 68%
joint stiffness, and 64% both. In addition, respondents reported other
unseen symptoms, such as fatigue (60%) and general stiffness, soreness
or aching throughout the body (58%).
The extensive and invisible nature of the symptoms makes RA
difficult and often frustrating to diagnose. In addition to the four
year average timeframe for diagnosis, 76% of respondents
saw at least three doctors and 54% had five or more office visits
before receiving a diagnosis.
"RA symptoms can be caused by a variety of other conditions. In my
case, I had a badly swollen elbow and was referred not to a
rheumatologist, but to an orthopedic surgeon," says RheumatoidArthritis.net
patient advocate Carla Kienast. "The continuing pain and swelling led
to a surgery I probably didn't need. It wasn't until a second orthopedic
surgeon finally referred me to a rheumatologist a few years later that I
was finally diagnosed and started receiving treatment."
Even though others cannot see the symptoms, they can have an
overwhelmingly negative impact on quality of life for those with RA. 70% report these symptoms affect their overall quality of
life. Some of the basics of life are affected, including the ability to
exercise or take part in physical activity (77%), ability to perform
family and/or household duties (71%), sleep (68%), and ability to work
Others often don't understand these issues. "Many RA symptoms like
pain and fatigue aren't visible. It's no wonder we get comments like,
'You don't look sick.' In addition, the disease is so unpredictable that
it's difficult for people to understand that we may be able to do
something one day and not be able to accomplish the same task the next
day," said Kienast.
In spite of these difficulties, RA patients are resilient. In
addition to physician-prescribed medical treatments, many respondents
use alternative therapies and made lifestyle changes to help cope with
their unseen symptoms. 95% use at least one
complementary therapy, such as vitamins, exercise, or heat therapy.
Eighty percent changed eating habits or utilized a special diet.
"There's no denying that RA presents some significant challenges
when it comes to following my dreams and living the life I want, so I
think the most significant lifestyle change I have made has been a
mental one," says RheumatoidArthritis.net patient advocate Mariah
Zebrowski Leach. "I have accepted the realities of RA as a part of my
life, but I haven't allowed RA to be the determining factor when it
comes to achieving my goals. I like to say: I have RA - it doesn't have
"The fact that so many RA patients struggle with misunderstood
invisible symptoms illustrates the need for a site like
RheumatoidArthritis.net. It is a place people with RA can come together
for support," said Tim Armand, President and co-founder of Health Union.
"In addition, it serves as a critical resource for the RA community to
learn from each other and find the latest treatment information."