RA: A Serious Disease Trivialized by a Name that Needs to be Changed

I have been living with Rheumatoid arthritis (RA) for 40+ years. I got it in my 30s while mothering three children. Many people get it younger than that — even as children.

Above is what it did to me. People stare, or look away. I cannot straighten my hands and it makes very simple tasks and self-care difficult. There is no way to reverse this damage, despite 8 surgeries. I had to leave my administration job and go on disability at 58 years of age. You can also view a video of my RA journey here.

It’s a disease I share with almost 20 million people worldwide and 1.5M in the U.S. alone, affecting women as much as three times more often than men and is thus subject to recognized gender bias in medical treatment.

Arthritis and other rheumatic conditions are a leading cause of work disability among US adults. 1 in 25 working-age adults aged 18 to 64 years face work limitations they attribute to arthritis; among those with arthritis, at least 1 in 4 have work limitations.

Words matter. Labels matter.

What is most distressing to me and many others living with RA is that the name of the horrible affliction is misunderstood at best and downplays the seriousness of this crippling disease. The name makes me feel like Rodney Dangerfield, the comedian who made a career of whining: “I don’t get no respect!”

Our disease gets no respect because it is thought to be synonymous with “old age” and the normal wear-and tear and aches and pains that come with aging. RA patients report often hearing comments such as: “Oh yeah, my grandma had arthritis in her fingers.” Or: “My doctor told me my knee pain is arthritis.” Arthritis is a generic catch-all name that encompasses hundreds of varieties of the disease and RA patients deserve a more specific nomenclature inasmuch as it has more in common with Lupus, MS and Type 1 diabetes than it does with Osteoarthritis (OA) — which it is most often confused with.

This is not about diminishing Osteoarthritis or those who suffer with it. I have both RA and OA and know all too well the pain and destruction of each. The objective here is to distinguish the two.

“Some diseases just have a bad name,” notes Kerry Sheridan, Medical Press in 2013. “With no central regulatory body for names, diseases and conditions can end up with multiple or contentious labels.” Historically diseases have been named by the doctors who first identified it such as Alzheimer’s disease, Tourette’s Syndrome and Parkinson’s rather than on a description of their underlying biological process.

Rheumatoid Arthritis, a name which was coined in 1859 by British rheumatologist Dr Alfred Baring Garrod, needs to be renamed to get the respect and dignity it deserves and to reflect its reality as a serious disease so it gets the research funding it needs and deserves.

Kelly O’Neil, author of Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. who blogs at RAWarrior, agrees. She advocates changing its name from Rheumatoid Arthritis to Rheumatoid Disease (RD) to eliminate confusion with OA. That succeeds in eliminating the word arthritis, however, rheumatoid is defined as a “chronic autoimmune disease characterized especially by pain, stiffness, inflammation, swelling, and sometimes destruction of joints.” Thus, it still limits it to a disease of the joints which is an inaccurate and incomplete misnomer.

RA impacts far more than the joints. According to the Mayo clinic, approximately 40% of people with rheumatoid arthritis experience signs and symptoms that don’t involve the joints. Areas that may be affected include:
· Skin
· Eyes
· Lungs
· Heart
· Kidneys
· Salivary glands
· Nerve tissue
· Bone marrow
· Blood vessels

Complications of RA

RA can affect many parts of your body, beyond your joints. It puts you at higher risk of developing a variety of conditions, such as:

• osteoporosis
• lung disease
• heart conditions — People with RA are almost twice as likely to develop heart disease as those without the condition. Having RA makes you more likely to experience a serious cardiovascular event like a heart attack or stroke.
• neuropathy
• anemia
• infections
• carpal tunnel syndrome
• heart and blood vessel disease
• diabetes

Various forms of heart disease such as heart failure (HF), Coronary Artery Disease (CAD), pericardial and myocardial disease, coronary artery disease, and disturbances in heart rhythm are more common in patients with RA than in the general population and contribute to an increased risk of death in affected patients.

Rheumatoid arthritis increases the risk of developing potentially fatal blood clots. It triples the risk of leg blood clots, and doubles the odds of lung clots, after taking into account other health conditions such as high blood pressure, surgery and cancer.

Balance issues, hair loss, bone erosion, and carpal tunnel, are more of the many complications of RA, not to mention the myriad side effects of medications ot treat it.

Adding to the lack of respect and lack of funding is that when someone with RA dies, the cause of death is most often listed as heart disease or some other complication without stating the underling cause as RA.

Change the name to Systemic Autoimmune Rheumatic Disease (SAIRD) or Autoimmune Systemic Rheumatoid Disease (ASRD)

My suggestions of names with more clarity and the specific dignity it deserves to distinguish it from other forms of arthritis is Change the name to Systemic Autoimmune Rheumatic Disease (SAIRD) or Autoimmune Systemic Rheumatoid Disease (ASRD).

A name such as these, eliminates “arthritis” and goes beyond that to better encompasses the realities of this disease. Adding both autoimmune and systemic to the name differentiates it from other rheumatoid disease, especially OA with which it is mot soften confused.

It Has and Can be Done

Has a disease name ever been changed? The answer is an astounding YES! Other disease names have been changed to be more accurately descriptive and/or less offensive or discriminatory to those living with the conditions. In 2015 chronic fatigue syndrome was renamed Systemic Exertion Intolerance Disease, or SEID for short. The change involved patient advocates and health professionals and was approved by the Institute of Medicine (IOM), which in turn changed its own name that same year to National Academy of Medicine.

Bipolar disease was formerly called manic depression. Depression was known as melancholia. The United States Centers for Disease Control and Prevention originally called HIV/Aids “the 4H disease” because it was believed to only affect Haitians, homosexuals, heroin users and hemophiliacs, while the press referred to it as Grid — which was short for gay-related immune deficiency.

The concept of a right to self-identification is a cornerstone of the LGBTQ+ community as well as Civil Rights and it was this same self-empowerment that resulted in my favorite example of diagnostic renaming: the movement to stop using the “R” word and instead to use the more respectful “developmentally or cognitively delayed.”

While many patients suffer debilitating pain and fatigue that often significantly impairs normal activities of daily living, RA is often an invisible disability — not immediately apparent. This invisibility is all the more reason it deserves a name that accurately and fully describes the complexities of the disease rather than narrowly diminishing it to a swelling and stiffness of the joints.

A name change is needed to gain increased awareness, respect, dignity, and sensitivity to the complex challenges faced by those — mostly women — living with this disease. More importantly, it would get the resrach fundng it neeeds.

The current name is offensive inasmuch as it is incomplete, inaccurate, confusing, trivial and minimizing of this devastating, chronic, incurable, degenerative and crippling disease.

We need to petition the powers that be to end the additional emotional pain and denial of lack of understanding, compassion and instead provide the respect those living with RA deserve.

Please sign and share the petition with family and friends. Post a link to the petition on RA support groups. Put it on an index card and ask rheumatologists to post it in their office.

PETITION: https://tinyurl.com/RA-Name-change

Alt link to PETITION: https://www.change.org/RA-NameChange

#RenameRA @RenameRA