Pencil Me In
There is a lot to hate about rheumatoid arthritis: the pain, swelling and fatigue, the side effects and expense of treatment options, and the fear of what the future with a degenerative disease holds, just to name a few. However, one of the aspects of living with RA I hate most is the impact that the inconsistency and unpredictability of the condition has on my ability to make plans.
I don’t know how many times I’ve had to cancel or reschedule plans with friends or loved ones due to symptoms flaring up. I have had tickets to events I ended up being unable to use, airline tickets that I had to get refunded (luckily with a letter from my doctor I was able to get refunds even on non-refundable flights), and work commitments that I was unable to fulfill. Because of my RA I have missed weddings and international travel experiences that I’d spent months planning. Living with arthritis is like playing with an etch-a-sketch, where I spend lots of time and concentration on my design, and then RA shakes it up and erases everything I’d worked so hard on creating.
Of course, people who don’t live with chronic conditions often have a difficult time understanding why I can’t follow through with the plans we’ve made together. Once my husband and I were making a six-hour drive to meet relatives at a beach destination. I was in a flare, which of course I couldn’t schedule the way one can book a rental house. We were not on the road long before sitting in the car and the pressure of the seat belt against my body was too painful to endure, so I asked my husband to pull over so that I could lie down in the backseat. However, that didn’t help much, as each bump in the road jolted through my joints, each curve or turn caused my body to strain in counter-movement, and even the sensation of the car moving across the pavement rattled painfully through my body. I begged him to drive slower and to turn less sharply, but it wasn’t my considerate husband’s driving that was the problem, it was my RA. Finally, with sweat on my brow and tears in my eyes I told him halfway through the trip that I just couldn’t bear it any longer, and asked him to find a hotel. When we called my relatives to let them know about this detour, they didn’t voice anything other than disappointment that they wouldn’t see us until the next day, yet I could sense disbelief that we were turning a six-hour trip into a two-day trip. I hate disappointing people, but in that moment I couldn’t care about their perceptions, and only needed to get my outraged body out of that car and into a bed.
At least we were still able to make it to the beach. There have been many times when I have missed one-time events and/or rare opportunities to see loved ones who live far away. In addition, there are those ill-timed flares that seem to occur each time I try to schedule and reschedule plans with an individual. Most people can understand one reschedule, but when it’s the third time I have to postpone plans I feel like I have to go into detail in explaining that it’s truly not any lack of enthusiasm that is disrupting our plans and is solely my unpredictable RA.
I am a very social person, an extrovert who usually feels more energetic after spending time with others than after an evening alone. Yet, RA often turns me into a reluctant introvert; there are many times when I just don’t have the energy to contend with my pain and carry on a conversation, or even sit up and walk around. I have always strived to be a dependable and loyal friend, yet my arthritis often gets in the way of that. Instead of being able to say, “Count me in,” I feel like I have to say, “I really hope I can make it.” Of course, the people closest to me are used to this, and if they feel any resentment about it they are too considerate to disclose it. Yet there have been many other people who don’t understand my reality, and these people either never become good friends or become relegated to acquaintance status. On one hand I am frustrated when people can’t understand how little control I have over the way my body feels, but at the same time I myself don’t understand this fluctuating, unpredictable, fickle beast of a disease. No matter how many years of living with RA go by, I continue to be surprised by the unexpected flare ups of pain and fatigue, and I never seem able to become less frustrated with the impact this has on all aspects of my life.