Learning to Comfort Myself

As a child, I had to develop some advanced emotional intelligence and resilience to cope with my rheumatoid arthritis. Even now, about 40 years later, I’m actually not sure of the dimensions and exactly how I did it.

Living life, even when the world said "No"

One of the things I had to teach myself was self-talk. Partly this came about because of being surrounded (except for my family) by a world that seemed to say no, that I couldn’t do what I wanted to do and be a full human participating in the world.

It felt like a lot of closed doors. For example, I loved the movies and the town’s movie theater had one step. I would hold onto someone in order for my unwieldy bones to climb that step and awkwardly walk to the nearest seat. (Later, I taught whoever was with me to hike my wheelchair up that step.)

But somehow in a world of no, I learned that was unacceptable. I learned to dream my dreams despite all the barriers—real and imagined. I learned to comfort myself during achy nights and to get up and fight for what I wanted.

Resilience and comforting self-talk

I remember even at a young age telling myself stories. I would tell myself how I wanted the world to be, what I wanted to do. I would say that places had ramps and I would go to them. That I would go to college (which I did). That I would find a job and buy things and go places. That I would travel and see things. Eventually, I did all these things and I think it was in large part the stories that I told myself. While I was comforting myself with “one day” dreams, I was also paving the way to someday achieve these goals.

Perhaps, most importantly, were the stories that I told myself about the more immediate. When I was about to have my hip and knee replacements as a scared teenager, I spent time imagining what I wanted the outcome to be. I wanted to walk. I wanted independence. I wanted enough abilities to go away to college and perhaps afterwards make a life for myself somewhere.

I didn’t necessarily focus on the typical surgical success goals, like being free of pain or having beautifully moving joints. It wasn’t that these things weren't important. But I was used to pain and joints. I knew I could live with it if I had to. What I truly and deeply wanted were the life experiences that I had envisioned.

Self-comfort to cope with RA

My parents have told me that they remember me crying in my sleep from pain. I don’t remember that, but I do remember being tired from pain and not being able to sleep. I remember my right hip (before the replacement) feeling like a beaver was inside the bone gnawing. I remember walking and walking, trying to build my strength. And all the while my bones clacking together like terrible gong bells that no one else could hear.

They say that children are more resilient than we can currently understand, and I feel like I know that truth. I am not sure where or how it happened, but I learned to comfort myself through the pain of RA. I learned how to tell myself stories and those stories lead me to a fulfilling, happy life. If I were to give advice about comforting oneself through RA, I would say speak kindly to yourself, listen to your inner child, and tell yourself the stories that you most need to hear.

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