Why I’d Like to See Rheumatoid Arthritis Renamed

Rheumatoid arthritis is not just bad arthritis. It’s a systemic autoimmune condition that affects a whole lot more than your joints.

There are many difficult aspects of living with rheumatoid arthritis (RA). One of them simply involves the name itself.

I wish more people understood that RA is more than arthritis.

RA is a progressive autoimmune disease that can affect more than just your joints.

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Rheumatoid arthritis is not osteoarthritis

When I tell someone I have RA, it’s not uncommon to get a response of, “Oh, I have arthritis too! It’s in my knee (or another joint).” It’s common for people to confuse RA with osteoarthritis, but the two conditions are very different.

The word arthritis means inflammation of the joint. There are many forms of arthritis, with osteoarthritis being by far the most common.

Osteoarthritis is primarily caused by mechanical wear and tear on joints and can be more common with age.

RA is an autoimmune disease in which the body’s immune system attacks the joints. It can affect other areas of the body such as the heart, lungs, nerves, muscles, blood vessels, eyes, and kidneys.

Osteoarthritis causes localized pain and stiffness in individual joints.

RA tends to affect multiple joints, often symmetrically, and also causes systemic symptoms such as fatigue and low-grade fevers — not to mention a host of other symptoms beyond the joints.

Sometimes, people can misunderstand the complexities of RA when they’re diagnosed because of its primary association with arthritis.

In the American Medical Association’s series “What Doctors Wish Patients Knew,” Shawn Baca, MD, a rheumatologist at Rheumatology Associates of South Florida says he wishes patients knew that RA is not just bad arthritis.

“A lot of people think that rheumatoid arthritis is just bad arthritis, and it’s not. There are actually over 100 different kinds of arthritis and rheumatoid is a very specific disease where the immune system attacks the person’s musculoskeletal system,” says Dr. Baca. “But it’s also systemic. It can attack your lungs and kidneys and you can get vasculitis.”

Treating RA is a lot more than treating joint pain

Both RA and osteoarthritis can be treated with NSAIDs such as ibuprofen for pain, as well as heat and cold therapy, joint immobilization therapy, and physical therapy.

RA, however, usually requires secondary care through a rheumatologist who can prescribe disease-modifying drugs such as traditional disease-modifying antirheumatic drugs (DMARDs) or biologic drugs.

RA is a progressive autoimmune disease, and these medications are immunosuppressants or immunomodulators meant to slow the progression.

Since being diagnosed, I’ve had a surprising amount of complications from RA, and the medications used to treat it.

I’ve had shingles, costochondritis (inflammation of the cartilage that connects the ribs to the breastbone), allergic reactions, staph infections, frequent urinary tract infections, bronchitis, rashes, and many other issues that have nothing to do with joint pain.

There is also the never-ending fatigue that follows me around like a dark shadow making everything more difficult.

It’s because of these systemic issues that I don’t even like to tell people my diagnosis, and that has a lot to do with the name of the disease and its associations with arthritis.

The name rheumatoid arthritis makes me cringe

When I was diagnosed with RA, I joined a couple of online support groups. One of the most popular topics of discussion involved frustration over the name of the disease because it seems to require a lot of follow-up information to be understood.

Those who live with RA sometimes feel like they have to qualify their experience of living with this form of arthritis to those who make assumptions based on their own limited knowledge of what arthritis means.

You might feel like you have to justify why you are fatigued, experiencing brain fog, or immunocompromised because most people don’t associate arthritis with these symptoms.

Whenever someone asks me how things are going with “my arthritis,” it always makes me cringe. One of the most surprising aspects of living with RA is how much it has impacted my overall health and well-being.

The issues that I deal with are a lot more complex than just arthritis — because RA isn’t ‘just’ arthritis.

Renaming RA: From rheumatoid arthritis to rheumatoid disease

Many people in my RA online support groups have taken to referring to their chronic illness as rheumatoid disease (RD) rather than rheumatoid arthritis, which I’m in full support of.

RA is a chronic, progressive autoimmune disease for which there is no cure. The name should reflect that reality.

It’s a position also taken by other RA warriors — notably Kelly O’Neill Young who suggests that changing the name to rheumatoid disease could save lives.

Noting how doctors can also dismiss symptoms not usually associated with arthritis, she suggests a name change to RD would help medical professionals recognize the systemic symptoms of the condition that are otherwise often treated as an afterthought.

In an opinion piece for The British Medical Journal, Savia de Souza, a Patient Insight Partner for Arthritis Research UK, suggests that “renaming a disease is only part of the solution”.

She notes that other forms of arthritis, such as psoriatic arthritis, aren’t ‘just arthritis’ either. They also have systemic effects. Beyond a name change, she suggests there needs to be a collective shift to understand the whole condition more successfully, which should include more patient engagement.

For me, and many others, words and labels matter.

What other Bezzy RA members say

Bezzy RA members shared some similar perspectives when discussing common misunderstandings about RA.

Bezzy RA live chats are hosted by your Bezzy RA guide, Ashley Boynes-Shuck, every Monday to Thursday at 5:00 p.m. Pacific time (PT).

The takeaway

Those of us who live with RA have to live with a lot of pain and frustration. It would be nice if the name of our disease didn’t add to the difficulties of living with it.

For now, I am going to try calling RA something different for myself as many are already doing. If enough of us call it RD then maybe it will become the new standard.