Living with Rheumatoid Arthritis is often a subtle masquerade of appearances: a smile when one is in pain, the forced buoyancy of energy when one is exhausted, the illusion of “all is well” when life feels in the balance, and the frequent utterings of hope when the future haunts like a tempest threatening. Appearances and reality are confused when social etiquette, politeness, tradition, and a certain unspoken disapproval of frankly discussing one’s health permeate interaction and dialogue with others.
“Just getting through it” is often a reality of rheumatoid arthritis when the pain, inflammation, and fatigue thrust their malicious claws into my life, permeating every minute with discomfort. At times I believe it is necessary to do so; how else will I get done what has to get done? How often, when I am alone or finally finished with the day, have I sat down, shoulders slumped, hands holding my face, and uttered under my breath the disappointment, frustration, and pain I actually feel?
A blend of reality and appearance, is life as I know it with RA.
There are different ways to view this problem. One can, certainly, unapologetically discuss one’s health, neither seeking pity nor support, but simply stating the facts. If someone else can’t handle that, than that is their problem — health and life are inextricably intertwined, so let’s not pretend. At the same time, in work and career situations, or in new social groups, treading carefully may be called for, and knowing how to navigate can help avoid frustration.
I often see a misinformed current of popular belief that blames illness on the sufferer, as if all diseases were merely a matter of lifestyle and the chronically ill failed to live up to the requirements of health. Such naiveté is borne either from egoism, ignorance, or a deep fear that shuns the reality inherent in life. Perhaps it is a combination of factors and personality, I don’t know. What I do know is that the view that the chronically ill are partially or even wholly responsible for their lot is more common than I would have believed before being diagnosed with rheumatoid arthritis. Certainly there are lifestyle risk factors to disease, but there are also genetic, social, environmental, and economic risk factors. One simply cannot view something like rheumatoid arthritis in a vacuum. Yet, in a vacuum I am often put when I tell the wrong person about RA. One need only hear a few responses along the lines of “just believe in the outcome you want and RA will go away,” to realize that one inhabits a different world that makes communication with some people impossible.
So what to make of reality and appearance?
I believe it is important to never apologize for having rheumatoid arthritis. Likewise, I believe a populace educated about chronic diseases like RA is our best bet for better policy, insurance coverage, and public research funding for novel interventions, therefore I make every effort to educate others. At the same time, you cannot use logic and reason to persuade someone who holds unreasonable and illogical beliefs, therefore there are some people I avoid discussing RA with entirely. On a different end of the discussion, there is the fact that my life often requires me to keep moving, and to fulfill responsibilities whether I am in pain or not. I often simply choose to not voice the reality of a given day for my own psychological health of not dwelling incessantly on something negative that I cannot change. Add to that the fact that for me, the disease is episodic, and there are times when I feel good enough, am genuinely energetic and gregarious, and my passion that has been hampered while in pain, is unleashed in a flurry of activity. To the onlooker I may appear like I don’t have rheumatoid arthritis at all. The reality is that the circumstance, time, observer, and the whims of the disease itself, can dictate what others see.