The Theory of Relativity
Sitting in my rheumatologist’s examining room, I’m greeted with a hello and a handshake when my doctor enters. He then asks, “So, how are you doing?” It seems silly that one of the most basic and common questions asked when humans greet one another can feel so loaded, and give room for such pause. Yet, pause I must, as this simple question does not have a simple answer for someone with rheumatoid arthritis, and there are many factors I must take into account if I am to tackle this query with any level of honesty.
Extreme pain is an easy one; if I’m experiencing intense discomfort, I can quickly say I’m not doing well. Yet, most days I am in pain, but it is at a level I can bear. Right now, as I sit at my computer typing, there’s a sharp, pinching pain in my shoulder, my fingers have a fuzzy-coated ache, and my wrists are sore. Yet, this is my normal, and I’m able to relegate this level of pain to the fringes of my awareness. I can focus on writing with my thoughts only occasionally interrupted by my joints, like an infrequent cough during a theater performance. I’m experiencing pain, so I don’t feel like I’m doing great, but I’m doing pretty darn good for me.
Pain is indeed relative, but so are the other symptoms of rheumatoid arthritis. For example, fatigue can be hard to pinpoint. There are times when the fatigue is so heavy and thick, so completely depleting, there’s no doubt its due to my RA. On those days, I know I’m struggling. However, there are far more days when it’s hard to tell where the exhaustion of being a full-time working mother with small children leaves off and RA fatigue begins. Am I so tired because my three year old kept coughing throughout the night or because my disease is more active? It can be really hard to say. This is a distinction that may not be important if a friend or co-worker is asking how I’m doing, but it’s an important difference to a rheumatologist.
In spite of inflammation being the most visible of the inconsistent symptoms of RA, I can’t always approach it with more objectivity than I do pain or fatigue. For instance, I’m far more aware of inflammation in my hands during the wintertime, as cold weather leaves my skin dry and therefore more likely to split when my joints swell. When inflammation isn’t accompanied by pain (and I do indeed experience them independently at times), swelling can escape my notice. However, bloody knuckles always grab my attention. My hands may be just as swollen in the summertime, but I’m less likely to be aware of it. Similarly, if a joint is inflamed but isn’t very painful, and it’s not a highly visible part of my body, I may not recognize the severity of the swelling. For instance, I have been shocked by the jelly-like appearance my elbows can take on, as the prior puffy phase escaped my notice due to the concerted effort one must take to get a good look at one’s elbows. Knees are often undercover in the wintertime, so I don’t look at them nearly as often as my fingers and wrists, and I can therefore be surprised as I put on my pajamas by how swollen my knees became during the day.
While all of my symptoms seem subject to some subjectivity, there’s also a degree of relativity to my over-all functioning. When my doctor asks me how I’m doing, I think, “How am I doing?” There’s how I’m doing today compared to how I’ve been over the last few weeks or months, there’s how I’m doing compared to how I’d like to be doing, and there’s how I’m doing compared to how most other 38 year old women are doing. I may be fatigued and in pain, but less so than I was a month ago when I needed a Medrol dose pack. However, the discomfort is still far more intense than I’d like it to be, and I certainly won’t be joining the morning running group that many of my friends are in together. It seems that RA complicates just about everything, even a question so seemingly simple as, “How are you?”
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?