Flare

 

Flare, as a noun, means a sudden burst of intensity, flame, or bright light. Flare also refers to a wide hem on a piece of clothing but, neither of those definitions really captures the concept of a flare in rheumatoid arthritis-or rather a person with rheumatoid arthritis.

In my lived experience, the true effect of an RA flare is thoroughly destabilizing, if not destructive, due to its pervasiveness, severity, and duration. 

Clinicians define a flare in rheumatoid arthritis as a worsening of symptoms or as this quote from a well-respected website phrases it:

"You may have some version of the original symptoms you felt when your rheumatoid arthritis (RA) was diagnosed, including joint pain and swelling, morning stiffness, redness, fatigue and mental fogginess."

Such benign language in that description, right? Sounds like side effects of a bug bite, a bee sting, or jet lag. Not even close to how a sudden increase in symptoms of rheumatoid arthritis actually feels.

It belies the agony felt by the person with rheumatoid arthritis.

Rheumatoid arthritis pain is widespread and impacts every part of the body from the head to the last distal phalanges of the feet, every single minute of every, single day, without relief during sleep, absolutely unending, and without relief with medication. Pain of rheumatoid arthritis isn't even limited to one type of pain and includes variable joint pain, intermittent muscle cramps, nerve pain, and musculoskeletal pain ranging from intermittently annoying to severe and pervasive. Quite literally, at times, aching to the bone. 

Amplifying the agony is the variable nature of the pain(s). Each unwelcome invader arrives without warning and stays on well-beyond any tolerable limit. At times the pains arrive in couples or groups, some bringing familiar agony while others carry fresh, complex, torment. 

The word flare minimizes the experience so significantly that I won't use it any longer. In its place, I will use a phrase: period of intensifying rheumatoid arthritis symptoms. This language feels far more accurate to the experience.

Periods of intensifying rheumatoid arthritis symptoms never have just one cause.

So, if there isn't one cause, what should I avoid? Should I avoid repetitive movements? Name a person who can avoid repetitive movements. 

Should I avoid vigorous movement? Name someone who lives and breathes outside of an end-of-life facility, who avoids vigorous movement. 

Should I avoid stress? Who can avoid stress of regular living and working? Stress exists at every age and stage of life. While I understand the nature of the advice, I reject it as an oversimplification of the complex lives of real people.

Well-meaning, expert websites preach that people with rheumatoid arthritis should, "double-down on a healthy lifestyle avoiding triggers..." What does that even mean? Double my restless and nonrecuperative nightly sleep from 8 hours  to 16? Avoid doing anything challenging because it could trigger a four-month-long spate of uncontrolled inflammation? That tiny-tidbit of advice or single-sentence direction from a website populated by so-called experts leaves me feeling diminished as a person and wholly dismissed as someone who actually lives with this condition--a condition most recently including a nearly four-month-long period of unrelenting, widespread pain.

To the supposed experts who reduce the pervasive inside-out pain of uncontrolled inflammation to one word, flare, please at least understand that this poorly understood phenomenon is at least erroneously named. The period of intensifying symptoms at least temporarily and suddenly, is responsible for the destabilization of everything positive about daily existence, optimistic about the future, or hopeful about life in general. Everything positive becomes obscured, out-of-balance, and out-of-reach. 

A periodic intensification of rheumatoid arthritis symptoms feels if my personal boat stabilizer (my gyro stabilizer), that reduces rolling and motion of the boat due to waves at sea, has broken and I lack the tools or resources to repair it. Even if intellectually, I realize that I have the tools, something about the mental fog in combination with significant physical pain, renders me less able to access those tools.

What's worse is the longer the boat/body rocks, the less able I feel, both emotionally and physically, to repair the gyro stabilizer.