It is fascinating that people ask about what is a ‘normal’ day, week or life with Rheumatic Disease (RD)? This question led me to ask myself what is ‘normal’? According to the Merriam-Webster online dictionary, the second definition of ‘normal’ is occurring naturally. Occurring naturally? What does that mean for people living with Rheumatoid Arthritis? Is RD ‘normal’?
Is there anything 'normal' about RA?
Scientists do not yet have a firm understanding of why Rheumatoid Arthritis occurs. It may be as a result of environmental, genetic, or personal factors such as age, sex and family history. But most likely it is a combination of myriad factors playing some role. The reason I have RD is likely different than the reason you have RD and we are both likely different than the next person we might meet. In short there is no ‘normal’ reason why we have RD.
What about living with RD? Is there a ‘normal’ way we experience RD on a day to day basis? Most of us who live with RD know that there is no single typical day. Somedays I feel like I can conquer the world. Yet the next day, hour or moment I might be taking a power nap or sitting up all night because laying in bed is difficult. If I have learned anything about RD, it is that my ‘normal’ today is likely not my ‘normal’ tomorrow.
Does RD occur naturally? Well maybe. We know that RD is an autoimmune disease meaning our autoimmune system has gone haywire and is attacking itself. But if my body has this disease, isn’t my body ‘normal’ for me? Or is ‘normal’ the time before I was diagnosed with RD? At this time of my life I have had RD about 1/3 of my life. To compare that I have been married, a father and a person with diabetes about 2/3rds of my life. I would have to say all four of these activities are ‘normal’ for me. So, doesn’t RD seem to be a ‘normal’ part of my life? I think it is. Yet too many people think being a person who has RD is not ‘normal’.
My 'normal' is unpredictable
I propose that when we are diagnosed with RD, we are given a new ‘normal’. A different ‘normal’. Maybe even a better ‘normal’? Some of us have met some of the neatest people since we have been diagnosed. People we never would have encountered otherwise. But many of us also feel the crushing isolation of missed events, opportunities or dreams deferred. But if we have deferred dreams, missed opportunities or increased interactions, what we are experiencing is ‘normal’ for us.
I went back to the Merriam-Webster online dictionary and there I saw the first definition of ‘normal’. It means “conforming to a type, standard, or regular pattern”. I cannot say for certain that RD conforms to anything. I cannot predict what causes or suppresses flares, I cannot accurately predict every time I will be exhausted, and I am awful at planning anything that comes about as the result of RD. In fact, with RD my life is about as non-conforming to a standard as one can get. Or maybe the unpredictability is ‘normal’? Maybe the fact I cannot sleep most, but not all nights, is my ‘normal’? Maybe ‘normal’ for me is being unpredictable. Next time someone asks me what it is like to live with RD, I will say it is like living with a three year old. I can accurately predict that life with RD makes me unpredictable and that is ‘normal’.
Do you agree? Does RD make your ‘normal’ unpredictable?
Has having RA put a hold on your ambitions?