What’s in a Name?

I don’t use the common name of the disease I’ve had for almost three decades. Instead, I call it rheumatoid disease, and there’s a reason.

As a writer, I love words. They have enormous power. They mold and shape how we think about and perceive the world around us. Call a forest “beautiful” and I’ll think of Bambi; call it “dark” or “looming” and I’ll think of the monsters that might be hiding in the understory hoping to shoot his mother dead. But it’s still just a forest: a thick stand of trees, plants, and underbrush that provides a thriving environment for insects, birds, and animals, along with a ready source of food, fuel, shelter–and fantasy–for human beings.

So why not use the commonly accepted name “rheumatoid arthritis” to describe my old nemesis? Because arthritis is only one aspect of the disease, just like “beautiful” is to “forest.” I believe that to describe rheumatoid disease simply as a form of arthritis misunderstands it and misinforms everyone. Even doctors, whom as a profession still use “rheumatoid arthritis” to describe the disease can’t help but be influenced by it–and not always for the best.

The word “arthritis” is ancient Greek for “inflamed joint.” In our culture, the word is most often associated with osteoarthritis, a disease which gradually erodes the cartilage that forms a cushion–a shock absorber–between the bones that form the joint. Painful and potentially disabling, incurable but treatable, OA is known as the “wear-and-tear” form of arthritis, affecting mainly the joints at the ends of the fingers, the thumbs, the hips, the knees, and more rarely, the ankles and feet. It affects some 27 million Americans, most of them older than 40, of both genders.

By contrast, rheumatoid disease is much more rare, affecting just 1.5 million Americans. Sixty to seventy percent are females, and in its juvenile form (juvenile idiopathic arthritis), it can affect children as young as infants. Furthermore, it’s an autoimmune disease: one in which the body attempts to destroy its own tissues, mistaking them for malicious foreign invaders like bacteria or viruses. It’s this vicious, ongoing internal war that inflames the synovial joints–the “arthritis” associated with the name. It affects the palm and second knuckles, the thumbs, the wrists, the temporomandibular joints (the jaws), the cervical and lumbar spine, the shoulders, the elbows, the hips, the knees, the ankles, the feet, and first two “knuckles” of the toes. RD is painful, often (and sometimes permanently) disabling, and incurable. It is sometimes successfully treatable, but it’s notorious for making end runs around the medications used to treat it.

It’s also systemic: it affects the entire body, not just the joints. RD can affect the linings of the heart and lungs, the kidneys, the eyes, and the vascular system, too; each of them contain synovial tissue. The inflammation also spreads to other soft tissues like the cartilage, the tendons, the ligaments, and even the muscles.

Is it any wonder then that when people say, incredulously, “Aren’t you too young for that?” or dismissively, “Oh, I have that, too; I just take Tylenol and I’m fine,” rheumatoid patients get a little miffed? After all, they obviously aren’t too young; nor have they mistaken their serious, systemic, even deadly disease for the more familiar, more easily treatable, and non-life-threatening OA.

But really, that mistake is easy to make, mainly because we call this it “rheumatoid arthritis.” Most people only hear the “arthritis” part, and almost everyone has a relative who has arthritis of the osteo type in a hand, hip or knee. Many even have it themselves. Can you blame them for making such a mistake?

Call it rheumatoid disease instead of rheumatoid arthritis, and the confusion will, with time and education, disappear. And once that happens, perhaps the real seriousness of the disease can take center stage and get the attention it deserves.

Because RD is serious. When RD the heart’s lining becomes inflamed it can inhibit its function–and that can cause death. When RD inflames the linings of the lungs, breathing becomes difficult or even impossible. Again: death. ”Rheumatoid lung” is a common and sometimes deadly symptom of the disease. The vascular inflammation RD can cause–called vasculitis–weakens the blood vessels large and small throughout the body, making them prone to break or burst, which can be debilitating, disabling, and deadly as well. And when the sclera and cornea of the eyes become inflamed because of RD, vision problems and even blindness can result.

The constant waves of inflammation coursing through the body cause other symptoms, as well. These include devastating and debilitating fatigue, low-grade fevers, a general, overall feeling of illness (malaise) that’s often compared to the flu, and cognitive dysfunction (brain fog). Taking care of daily tasks normally with any of these is difficult, at best.

And then there’s the joint inflammation–yes, the arthritis–caused by rheumatoid disease. The synovial tissues–the lubricating fluid inside the joint capsule, the capsule itself, and the nearby soft tissues (the cartilage between the bones of the joint, and the tendons and ligaments) all become inflamed as the disease does its work. Slowly, the inflammation eats away at these tissues, causing them to break down,  resulting in deformed and permanently disabled joints. Pannus, the inflamed, thickened synovial fluid, may extrude from the joint and distort it, as well. The pannus hardens and interferes with or stops the joint’s function entirely, causing permanent disability.

That all this causes pain that runs the gamut from mild to severe, even excruciating, almost goes without saying. And that disables, as well.

RD has a long list of comorbidities–diseases and conditions that develop because of it or the drugs used to treat it–too. They include bursitis, tendinitis, depression, gum disease, hearing loss, Sjögren’s syndrome, Reynaud’s disease, kidney disease, osteoporosis, and neuropathy (nerve damage). Others include malignancies, infections, obesity, heart disease, lung disease, and type II diabetes. Pain and disability can make exercise difficult. A sedentary lifestyle can face anyone, including those with RD, with the triple whammy of metabolic syndrome: obesity, heart disease, and type II diabetes.

The fact is that rheumatoid disease isn’t just about joint inflammation. By calling it “arthritis” we’re dumbing ourselves, and others, down about the serious dangers it poses to those who have it. When we choose to downplay that seriousness ourselves, why are we surprised that rheumatoid disease isn’t near or at the top of the list of diseases that we need to find a cure for as soon as possible? It may not affect as many Americans as that other, real arthritis, osteoarthritis. But RD has a profound effect on those who have it for as long as they live–and that’s usually about 10 years less than the general population.

That’s why I call the disease I’ve lived with for 29 years “rheumatoid disease.” Care to join me?

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