The Use It or Lose It Approach to Living with Rheumatoid Arthritis
Does Use It or Lose It Work for living with RA?
Gee, I hope you won’t mind another beach story. Here is a different view of the same beach.
Right about the time I was finally diagnosed with Rheumatoid Arthritis, I got a call from a friend who was coming to the coast for a vacation. “Bring the kids and come out to the beach and see us,” she said. I really love to visit friends. Of course, I love the beach. And, like most people, I hate to say, “No.”
So, I set out to manage the beach. At this point, the Rheumatoid Arthritis had only disabled my shoulders and my feet. It was pretty early in the process. However, the disability was extreme. I no longer washed my own hair, much less styled it. Walking was difficult. My kids helped me do everything that I did do – and did the rest for me entirely.
Like I said, this was early in my living with RA process. So I did not think about how my friends would react to the Rheumatoid Arthritis. I assumed that they would accept me as they always had, and perhaps even sympathize with my plight.
These friends had always been particularly kind to me. We had laughed and cried and prayed together. They had noticed more than once when I needed something– and given it cheerfully without having been asked. So I was shocked at the reaction to what RA had done to me.
At first, there were merely disapproving looks because I let the kids carry all the stuff onto the beach. There were lots of stairs around the condo and I was having a hard time getting around. I had learned to lean on the shoulder of my son to help me walk. I did not say anything, but I was always several paces behind my friend. She’s the “Why walk when you can run?” type – like I had always been. (See Makeovers and Bag Ladies.)
I just couldn’t keep up with her and she seemed a bit annoyed about it. But, I hoped I was wrong in my perception. Maybe she was stressing over something else.
When we were finally seated on the beach chairs, I waited for a good opportunity to tell her about the Rheumatoid Arthritis. It was awkward, but it never occurred to me to give up. She was a friend, after all.
However, neither sympathy nor empathy was forthcoming. There were a few comments about how her pains were worse than mine. I would rather be friendly than pushy, so I gave up pretty easily.
She carried my beach chair on the way back up to the car. I will never forget what she said to me, “You know, Kelly, what I have always believed? You either use it or lose it. Do you know what I mean?”
If only I could find a way to live in her reality – where Rheumatoid Arthritis is not real. How can I get into THAT reality? I only gulped. I did not reply. But now that I have had a few years to think about it, I know what I should have said:
“You know what I have always believed? Compassion – I always say – you either use it or lose it. Do you know what I mean?”
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