The Power of Words
I recently read an interesting article about how humans formulate words that connect and convey internal physiological/physical situations to the outside world. A couple of early examples would be the infant crying when they are hungry or in pain morphing into the toddler who can actually say “hungry” or “hurt”. Humans also learn words that convey external situations to internal feelings, like “hot”.
It struck me that this process does not stop as we grow. In fact, this early development helps define our reaction when we hear others say those words. The word “hurt” may conjure up the pain of a skinned knee for one person compared to more traumatic pain for someone else.
In addition, I realized we continue to connect both our emotional and physiological feelings to specific words as we have new experiences. For example, since my RA diagnosis seven years ago, I’ve had conversations with or read many discussions by patients concerning the infusion experience. The words used by (and therefore both the emotional and physiological impact on) patients varied greatly depending on the infusion environment. Probably the most extreme examples are the experiences discussed by patients who undergo infusion in a highly clinical environment, often side-by-side with terminal cancer patients who are also receiving infusion treatments. Compare this experience to patients who receive infusions in a more private, comfortable setting. The people in the clinical environment use words like stressful, depressing and discouraging. Those who receive their infusions in the other setting use words like calm, easy, and reassuring. I can’t help but believe that the same word, “infusion”, conjures up a completely different response and imagery from the two groups of people. Given the demonstrated effect of both stress and positive thinking on medical outcomes, I can only wonder if the less-clinical environment also helps support a more favorable response to the medication.
Words are one thing, but language is formed when two or more people agree that a certain sound means a specific thing. For example, we agree that “sun” means that shiny thing that shows up in the sky every morning. Vocabulary (the words that make up the language) evolves as the experiences of people expand. For example, those of us in Texas only have one word for snow (and it contains four letters), while the Eskimos have (at least) 50 words to describe it.
You can apply this concept to the current conversation in the RA community on whether the group of conditions currently labeled “rheumatoid arthritis” should be more correctly termed “rheumatoid disease” or “RD” for short. The proponents argue that this terminology more clearly describes the severe, systemic, and chronic nature of the condition and separates it from lesser disorders such as osteoarthritis. Others claim that adding yet another term to the conversation will only confuse and dilute the situation.
But the most exciting thing to me is that the conversation is actually happening. Because of this, the vocabulary is not only evolving but is expanding to be understood by more and more people – not only the medical profession and patients, but a greater number of the general population.
I think one of the most significant contributions to this language evolution is due to the patient’s voice being heard as never before. Thanks in large part to social media, patients are sharing information, formulating their own expressions, and conveying factual, emotional, and physiologic information about the disease, treatments, and impact on life as never before. This evolution/revolution is being heard from the homes to the doctors’ offices, to the scientific laboratories, to the corporate boardrooms and to the halls of government.
The term “RA” does not have the visceral impact of the word “cancer”. (Yet.) But with continued conversation, especially by the patients and their caregivers who live with the disease every day, the vocabulary will expand, the language will be used and the message will be heard.
When you discuss RA, what do you call it (or describe it as)?
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?