Those of us living with rheumatoid arthritis/rheumatoid disease (RA/RD) can have our lives upturned at a moment’s notice by a flare of symptoms. While triggers and treatments can play a role in how often and how severe our flares are, unpredictability is a central characteristic of this disease. It’s typically very difficult to forecast when a flare will hit, which joints it will affect, and how long it will last.
When I flare, the severity can range from pain that makes it difficult to get through a routine day to pain so intense it is impossible to perform daily activities. It can be difficult to simply hold a glass of water or brush my teeth, much less walk from the parking lot up the staircase to my office, speak coherently at a meeting, or read my children a bedtime story.
Flares completely disrupt my calendar and my intentions. If I’m in a lot of pain I may be able to make it through the workday, but making it to a social outing is unthinkable. Even if I were to drag myself there, I wouldn’t have the energy to chat and mingle, wanting instead to search for a quiet corner to rest and hide. Events I’d previously looked forward to become shaded with dread and menace. What once seemed fun and merry becomes heavy and impossible.
A flare is like a storm raging through my body, raining down pain, gusting with inflammation, and flooding with fatigue. It ravages the landscape of my mood, leaving me feeling jaded, irritable, fearful, and guarded. Creating a wake of decimated plans, broken to-do lists, and damaged emotions, the storm of a flare upends normality with wreckage.
And then, like a storm, the flare passes.
When a flare is finally over, it feels like my life was held hostage and has now been released back to me. I can once again write a to-do list, make plans with family or friends, and think about how I want to spend my day, rather than wondering how I’ll get through it.
There is a pervasive gratitude throughout the moments of my day as I reflect on the flare that I’ve cleared. Thoughts run through my head such as, “Yesterday it hurt so much to drive my car” or “It’s already lunchtime and I haven’t even needed any pain relievers today” or “Maybe I’ll play a game with the kids before I start dinner.” The layers of loss that occur during a flare are lifted, and I’m grateful to have made it through to the other side.
But when will it strike again?
At the same time, I remain guarded, not knowing when the next flare will come. My husband might start discussing possible weekend plans, and I’ll say, “That sounds fun, but let’s see how I’m feeling.” I once again refer to my to-do list daily, but I section it into “must do” chores and “hope to” tasks. After a flare I must regain confidence in my body’s ability to go a few days in a row flare-free. With each day, I am more hopeful that the following day will include only my “regular day” levels of pain and fatigue, versus the intensity of symptoms that comes with a flare.
Thinking of this ebb and flow of pain, I’m reminded of childbirth. During each contraction in labor, one must focus solely on making it through. It is after the contraction releases that one can think about ice chips, exercises, and comfort measures. Flares are similar in that everything else falls to the background while I’m surviving one. However, in childbirth one knows there is an end to the pain, that eventually the baby will be born and the pain will subside. With RA/RD, there is no such timeline, and no sublime reward at the end. There is no way of knowing how many years of pain lie ahead, nor when the next flare will hit.
I am grateful each time I survive a flare. Yet I cautiously wonder whether it is the calm after the storm or only the eye of the hurricane, a brief reprieve before I’m walloped again. Even when the stormy flare has truly cleared, there’s always another one lurking in the distance. When living with RA/RD, it seems that hurricane season never truly comes to a close.