What Is In a Name?

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“You have sero-negative rheumatoid arthritis,” was not what I wanted to hear from a giddy doctor who was practically doing back flips because he was so excited to see that I had some extra floating bones in my hands and feet per the x-ray images. “Sero?” I asked. That was the first time as a nurse I’d ever heard that terminology applied to RA. I knew what arthritis was and I thought rheumatoid arthritis was just a more severe form of the disease, but arthritis is only a symptom of a much more severe condition.

Per the Arthritis Foundation: “Rheumatoid arthritis, or RA, is a form of inflammatory arthritis and an autoimmune disease. For reasons no one fully understands, in rheumatoid arthritis, the immune system – which is designed to protect our health by attacking foreign cells such as viruses and bacteria – instead attacks the body’s own tissues, specifically the synovium, a thin membrane that lines the joints. As a result of the attack, fluid builds up in the joints, causing pain in the joints and inflammation that’s systemic – meaning it can occur throughout the body. Rheumatoid arthritis is a chronic disease, meaning it can’t be cured. Most people with RA experience intermittent bouts of intense disease activity, called flares.  In some people the disease is continuously active and gets worse over time. Others enjoy long periods of remission  – no disease activity or symptoms at all. Evidence shows that early diagnosis and aggressive treatment to put the disease into remission is the best means of avoiding joint destruction, organ damage and disability.” For more information see: http://www.arthritis.org/types-what-is-rheumatoid-arthritis.php

How could I not have known about this disease as a nurse and mistaken it for osteoarthrtis (OA) which is joint destruction caused by normal aging wear and tear on the joints or injury? I quickly found out I wasn’t alone. Most of my nursing colleagues thought the same thing! Given that skilled medical professional nurses thought that RA was just an advanced form of OA, no wonder I was having trouble explaining the seriousness of this disease to family and friends. I have even encountered physicians who do not know that rheumatoid arthritis is a systemic autoimmune disease.

Because there is such a lack of knowledge and understanding regarding rheumatoid arthritis a name change has been under scrutiny for several years. Many patients want to get away from the word “arthritis” to avoid confusing it with OA. The Rheumatoid Patient Foundation has recommended “rheumatoid disease” or RD and many patients have began referring to their illness with this nomenclature. It will be difficult to get away from “RA” because it is a simple, easy to remember abbreviation. The medical community likes their abbreviations! I personal think the disease should be renamed, “ruin your life with never ending pain and suffering disease”, but that might not be the most popular choice! Some patients have opted to call the disease “RAD” for rheumatoid autoimmune disease, but the “A” in the abbreviation once again brings up the old context of stating for “arthritis”. Regardless, the medical community has not fully embraced a name change, but the American College of Rheumatologists are finally backing the patient choice and are calling for an offical name change.

So, why the big deal about a name? I personally think it is because as human beings we need to be understood. The symptoms of RA are so intense and intrusive in your life it is hard for the general public to believe that a person in this day and age of medicine would have to suffer with the degree of pain associated with the disease. Because of this belief, there is a tendency for others to judge RA patients as exaggerating the effects of the disease. Most everyone has a grandparent that has arthritis, so it is deduced that it can’t be that bad, right? Wrong. It is so much worse than most patients would admit. It seems like the harder we patients try to convince our medical team, family, and friends how awful this disease is, the more desperate we seem and thus there is a tendency for others not to believe us, which is so hurtful.

To further compound the problem, there is a differentiation between RA and Sero-negative RA in the medical community in which physicians are taught that S-RA is a lesser version of RA simply because the patient’s blood doesn’t test positive for the Rheumatoid Factor and ANA (Anti-Nuclear Antibodies). The truth is that rather one is positive or negative, rheumatoid arthritis is a horrible disease and the fine lines that divide one classification from another do little to comfort me as a patient. In the three years since my diagnosis, my RA has advanced from mild to severe limits. My symptoms are comparable to that of someone who is sero-positive. If you would like to know more about sero-negativity and what the lab results mean, check out: http://chroniccurve.tumblr.com/post/15295991395/seronegativity-for-dummies-a-lesson-in-seronegative. Per this website, 30% of those diagnosed with RA are sero-negative.

As rheumatologists, patient foundations, and researchers continue to argue over the name of the disease, the fact is I’m still in pain and my disease worsens day by day. A name change is important if it is accurate, understood by the medical community and the general public, and lends validity to the patient’s symptomology because this facilitates acceptance and understanding.

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About Mischelle Jackson

I am a middle aged, single lady living with Rheumatoid Arthritis and other chronic illness which have led me into early retirement from a nursing career. I have a fur-baby, Jaycee, a Chihuahua, who makes me laugh and helps me get out of myself when I'm having a bad day. I crochet for relaxation when the RA allows. My faith sustains me.

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