RA Awareness Gaps
February 2 is Rheumatoid Awareness Day. Unfortunately, this day is necessary, as a majority of people either have no idea what rheumatoid arthritis (or rheumatoid disease) is, or they have misconceptions about the disease. Here are some of the comments I’ve heard over the 15 years since my diagnosis that highlight how much education on RA is still needed.
“I’ve got arthritis too. I have it in my knee from playing football.” When most people hear the term “arthritis,” they immediately think of the pain, stiffness and swelling that can occur in joints due to wear and tear. This type of arthritis is called “osteoarthritis,” and it typically affects older people or those who have injured or overused certain joints through heavy activity.
Osteoarthritis [OA] is very different than rheumatoid arthritis [RA], which is an autoimmune disease. Whereas OA is caused by cartilage breakdown due to repeated activity, RA is caused by the immune system becoming confused and attacking healthy tissue instead of fighting germs. While OA is localized in whatever joint(s) that has seen a lot of wear and tear, RA by definition impacts multiple joints. This disease can affect every joint in the body, as well as muscles, tendons, ligaments, and even organs such as the eyes, lungs, and heart. The widespread symptoms of RA can have tremendous impact on one’s quality of life, and in rare cases can even be fatal.
“But you’re too young to have arthritis!” Again, most people think of OA when they hear the word “arthritis,” which is understandable, as OA affects approximately 27 million Americans and RA is seen in approximately 1.3 million people in our population. While OA can affect young people who are very active, have had an injury, are obese, or have other risk factors, the majority of people with OA are 55 years old or older. In contrast, the majority of people with rheumatoid arthritis are diagnosed between the ages of 30-60. In addition, there are approximately 300,000 American children diagnosed with Juvenile Rheumatoid Arthritis, and approximately half of these individuals will continue to experience symptoms into adulthood.
I was diagnosed with RA at the age of 22, after experiencing symptoms for several years, and can attest to the fact that RA often does impact young people in the prime of life.
“You look healthy though.” Rheumatoid arthritis is often referred to as an “invisible disability.” This means that most of the symptoms experienced are internal, rather than external, and may not be visible or recognizable to others. While some people with RA require the use of wheelchairs or walking aids, most individuals with the disease do not show any apparent signs of having a disability. In addition, many of us who live with the chronic pain of RA are not quick to show our distress, as we don’t want others to assume we are less capable due to our disease. Therefore, we may look very polished on the outside but are struggling with a great deal of pain on the inside.
“That’s in your joints, right?” It’s true that RA does primarily impact joints. However, as referenced earlier, it can also affect other tissues such as muscles, tendons, and even organs. RA can impact one’s skin and eyes, and there are pulmonary and cardiovascular complications for some RA patients. Furthermore, rheumatoid arthritis frequently causes fatigue, which in some cases can be as debilitating as chronic pain. While an individual with rheumatoid arthritis may indeed be impacting that person’s joints, the symptoms can impact most parts of the body.
There is much work to do in bringing awareness to the facts about rheumatoid arthritis: that it can impact anyone; that it causes widespread pain, inflammation and fatigue; that these symptoms can be devastating to one’s quality of life and, in some cases, can even be fatal; and, perhaps most importantly, that there is no cure. Hopefully, increased public awareness of RA will lead to increased funding for research that could lead to a cure, as well as increased understanding and compassion for those struggling with the challenges brought on by this disease.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?