I Am Not Pitiful
This past week a friend asked about my health. They were sincere in wanting to know how I was doing, and I gave them the capsule overview. That is when my friend paused and commented about how he felt bad for those with crippling arthritis. Then he said in an off-handed way he thought those of us with RA are pitiful. Pitiful? I am not pitiful. He corrected course immediately when I reminded him; I am doing well for a guy with three autoimmune conditions.
Multiple autoimmune conditions
Yes, he agreed I was doing well, he was speaking about those who became crippled with the condition. Oh, so all of us? I mean take away the infusions, and I am likely not walking in less than three months. He backtracked once again. That was when I let him off the hook.
But should I have let him off the hook so easily? One of the issues with a condition people do not see is that they do not see it. We do not have a sign for pain, fatigue, tiredness, or lack of sleep. Should I hold up a card, so everyone can see my self-rating of pain? Maybe a card hung around my neck with a score of 1-10? Mine would be marked 5 or 6 each day, but some days it would go up and some down. Perhaps I would not have to let my friend off the hook next time I see him?
My postcard collection
I have an old postcard collection, and some of them are delightful to look at. I received these postcards from a neighbor of my grandmother as a child. When they were readable, you could trace a three-way love affair between two ladies and one gentleman (the donor's deceased husband I believe) throughout several years beginning in about 1912 until about 1925. The writing on the back was the most interesting part as the women were writing the bachelor regularly asking for attention and reminiscing about encounters they had been part of with the gentleman. I do not know if the lady who gave them to me had any idea what was detailed on the back of these cards, but I can say it was interesting reading for a 12-year-old boy.
What I realized is that some of the most formal cards detail some of the more torrid remembrances. Like the Easter Card plea for more attention because of their Valentine’s day encounter. Or the Christmas card with a picture on the front that says the husband is away, won’t you come and play. These three to five people carried on an avid letter-writing campaign that was something like slow email today. I used to love reading them and imagining what these people looked like, and how they ended up, or I enjoyed looking at the cover pictures and imagining those places and times.
Not like the pictures
As fun as reading these stories is, I must remind myself that I do not know much about them. I got a small one-dimensional look at their lives. Sure, my mind built images of them and what they were feeling and doing on a regular day. But in truth, I know almost nothing about these people. Sure, it was fun to look inside their lives, and yes, I fabricated whole narratives for them. But that fabrication was not the real person. It was instead my mental interpretation of their lives.
When we say, we have RA people often jump to preconceived notions of what we are, based on our diagnosis. They want to categorize us based on their understanding of the condition. They overlay on us their history of how they have experienced people who have the disease.
Of course, we know we are not one dimensional, we are more than pain, joint disfigurement, organ involvement or any other symptom. I know no one can classify me based on Rheumatoid Arthritis, Diabetes, Ankylosing Spondylitis or anything else. I am all those things and more, and for my friends benefit, I am not now and never will be pitiful. Anyone who thinks otherwise will be corrected quickly. It is true I may need help sometimes or I may need a ride when my feet do not function so well, but the last thing I need or will accept is anyone’s pity. Any person who tries to give it to me is not a friend, they are at best an acquaintance and one I might well forget sooner than later.
Has having RA put a hold on your ambitions?