By Kelly O’Neill Young
A patient expert weighs in on the importance of clear language when discussing rheumatoid arthritis/rheumatoid disease.
When I was diagnosed with rheumatoid arthritis (RA), I had no idea what it meant. Not only was I unaware of what symptoms to expect, I did not know exactly what the disease was. My grandfather had lived with the disease, and died with it. But the only things I remembered were his bent fingers and watching him push with the back of his hands to stand up. Why did he do that and what was wrong with his hands?
I asked more questions when Granddad died suddenly from a heart attack (first event myocardial infarction). People don’t just die in their sleep out of the blue—at least they hadn’t in my 19 years. Family members answered my questions with clichés about death that left me quiet but still curious.
In Pain, and Unsuspecting of More
As mysterious joint symptoms pestered me occasionally over the next two decades, I asked my doctors a few times whether I might have RA. Each one insisted it was impossible. How did they know? I had no idea how they judged.
It haunted me that my frozen shoulders, dislocated hips, painful feet, and neck degeneration might be that mysterious disease of Granddad’s that I knew nothing about.
Eventually, I experienced onset of full-blown RA, with multiple joints swelling intermittently. I lost strength and range of motion overnight. It only took a couple more doctors before one finally ran a blood test that indicated RA.
This new pain in my joints was comparable to the pain of childbirth without medication, which I had experienced five times. Now, I thought about Granddad a lot. Why hadn’t I asked him more questions? How could I know absolutely nothing about this disease?
Unexpected Bonuses With RA
Unfortunately, my joint pain and stiffness were not my only symptoms. There were bright red rashes that covered my arms, daily fevers of 101 degrees, black circles on my toes, and severe reddening of my face several times a day.
Because the harsh joint symptoms interfered with doing most normal activities like washing my hair or dressing my baby, they eclipsed my systemic symptoms at first. So, I took many surprising symptoms in stride. Even my kind rheumatologist essentially shrugged at my systemic symptoms, at one point saying, “But those aren’t joints.”
In addition to weird skin symptoms and daily fevers that continued for years:
- No one warned me my eyes might dry out. When I got to the point of wearing sunglasses at night in my living room, I went to the ophthalmologist who said the surface of my eyes “was rough like asphalt.” Sjögren’s syndrome, he said, from your RA.
- No one warned me I could lose my voice entirely. By the time I went to a throat doctor, I knew. Cricoarytenoid arthritis, inflammation, and spasms, from the RA.
- No one told me RA could inflame my blood vessels, but it did. It caused painful blood blisters from just folding clothes or taking a step. I was also diagnosed with livedo reticularis, a permanent condition on my skin caused by rheumatoid vasculitis, courtesy of RA.
- No one believed RA would affect my heart, least of all me. But the erratic blood pressure and atrial fibrillation I experience are some of the many heart symptoms investigated by rheumatology experts at Mayo Clinic.
- No one seemed to know inflammation from RA could cause platelet levels to rise to over 700,000. But mine do, along with frequent bleeding under the skin and numerous abnormal blood lab results.
- Could RA lead to autoimmune hepatitis? It seems to have done so in my case and that of other patients I know.
- No one ever suggested vitiligo was a possibility either, but here we are, with skin on my arms that doesn’t make pigment any longer.
- No one warned me about shortness of breath. But whatever I can feel going on in my heart, lungs, or blood vessels has caused this frequent symptom as well.
Rheumatoid Symptoms or Coincidental Co-morbidities?
“But Kelly, you are an unusual case,” I’ve heard. Am I? Being part of a patient community for several years has convinced me that I am not unusual. It is not unusual to have close relatives who died from RA-related causes. And extra-articular disease (meaning disease not located in a joint) is not uncommon.
It becomes hard to imagine these are coincidences.
While I learned firsthand the harsh pain and limitations RA’s effects impose on a person’s joints, the following also contributed to my understanding:
- Hundreds of thousands of interactions with other people with RA
- Hundreds of academic articles from medical journals and historical publications
- Large surveys and polls of our patient community
I also had two advantages as this data informed my understanding of this disease: A sincere curiosity to know the truth, and an abiding trust in the stories patients tell.
Research and Listening Persuaded me That RA is RD
One common thread connected all these data points and my experience. It was that RA is not a type of arthritis. Arthritis is only one symptom of what we call “rheumatoid disease.”
When I started interacting with other people with rheumatoid disease (RD) in 2008, I heard the same refrains often heard today: “No one understands. People think this is the same as osteoarthritis, but it’s so much more.” I avoided discussions and arguments about the name of the disease. I wasn’t afraid to confront the error of the disease name; I was worried about wasting time debating the name when there was so much work to be done to provide information and encouragement to people fighting the disease.
Meanwhile, I read many academic articles that refer to RA as rheumatoid disease, especially non-American publications, older articles, and those published in non-rheumatological journals. If you think about it, it might sound silly in a thoracic or cardiac journal investigating ways RD affects the lungs to use the word “arthritis” because there are no joints in the lungs or heart.
The bigger picture came into focus.
The picture I saw was undeniable. People I heard from were living with the complex disease that is documented in medical literature. Arthritis is a painful and significant symptom of that disease. However, arthritis is not necessarily the first nor most life-impacting symptom. Neither is joint inflammation (arthritis) the reason for the persistent mortality gap in RD.
Most of the problems faced by people with RD are closely related to the misnomer of RD as “a type of arthritis:”
- Medical problems that contribute to the mortality gap are not appropriately treated in RD because of the false impression that the disease only affects joints, and only certain joints.
- Problems with lack of empathy or obtaining accommodations in both personal relationships and employment have a common cause: the lack of awareness of the nature of the disease.
- Better treatments and a cure have been stalled by confusion about how the disease affects the body. For example, many researchers are unaware of specific ways in which RD inflammation affects certain organs and systems.
The Experiences of Patients Pointed to a Simple Solution
Rheumatoid disease is actually a historical term. So I often say, “I did not invent the ball; I just picked it up and ran with it.”
I wrote my book, Rheumatoid Arthritis Unmasked, to help patients and medical professionals know the medical dangers of rheumatoid disease that need to be addressed in people living with RD.
The term “RD” has been readily adopted by many patients and is used interchangeably on some health websites because they know patients appreciate it. It has been a natural change for the patient community because most of us know someone who died from an RD-related cause.
Correcting the label of RA to RD is the most simple and productive action that could be taken to help people living with the disease. It is time to update the label and acknowledge that research confirms what our experiences with the disease have already taught us: that arthritis is only one symptom of a complex disease.
About Kelly O’Neill Young
Kelly is the creator of the award-winning website RAwarrior.com, which she launched in 2009. Her non-profit organization, the Rheumatoid Patient Foundation, works to improve the lives of people living with RA/RD through research, education, and advocacy. She also works as a consultant and patient advocate with various organizations and agencies including the Food and Drug Administration (FDA), the Patient-Centered Outcomes Research Institute (PCORI), and the Department of Health and Human Services.