The Waking Nightmare of RA
Last night I had a nightmare. In my dream, I felt a strange sensation in my right wrist, and looked down to see a squirming bulge pulsing under the surface of my skin. I stared in intrigued terror as my skin began to open and tiny claws emerged. Horrified, I watched as a scaly snout protruded from the wound. Finally, the entire body of a baby alligator crawled out from my gaping wrist.
Overwhelmed with disgusted confusion, I asked, “How can that have gotten there?” I began searching for help, and then the process began again, another alligator digging out of my body. I found some relatives and tried to explain what was happening, but they didn’t believe me. As a third baby alligator began tearing through my skin, I screamed, “Why is this happening?!!”
A scar from wrist surgery for RA
I awoke in a jolt. Disturbed and repulsed, I tried to shake off the residual emotions that carried over from my dream into my conscious state. I wondered, “What was that all about?” Then I looked at my right wrist, the scar from surgery in the exact place where the first alligator surfaced in my dream. I thought of all the times that wrist has been in a splint over the past 33 years, initially for unexplained joint pain and then for the unpredictable flare-ups of diagnosed rheumatoid arthritis/rheumatoid disease [RA/RD]. With an “Oh!” all of a sudden the dream made complete sense.
The unpredictability of RA pain symptoms
Living with RA/RD can feel like a waking nightmare. The unpredictable flares of pain seemingly come out of nowhere, just as the alligators did in my dream. If you bang your funny bone on a doorframe, it makes sense that you have a jab of pain. However, it stretches the belief that one’s body could hurt so much and so suddenly from no exterior cause. I can be walking along, feeling just the mild achiness that never leaves me, when I’m suddenly stabbed with a shooting pain that stops me in my tracks. I didn’t trip, I didn’t bump into anything, no one hit me, and yet I feel like I’ve just had a metal poker pushed through me. It’s terrifying and hard to make sense of.
People without RA fail to understand its unpredictability
These unpredictable symptoms are hard to understand even to the person experiencing them. Therefore, it’s no wonder that people whose bodies only experience pain for easily explained reasons have trouble understanding. This can cause a disconnect between those of living with RA/RD and our loved ones who don’t understand what we’re going through. We generally look fine on the outside, but inside we know there are tiny alligators ready to take their next bite at any moment. As we’re in dire need of help, it seems like lunacy to the rest of the world.
Holding out hope for "good days" with RA
In the nearly 20 years I’ve been diagnosed with this disease, I try to maintain hope. If I can’t believe that there are some “good days” of low-RA activity in my future, I want to give up. If I don’t hold out some hope that the medical world will continue to make advancements in treating this disease, fears for my elder years get too strong. Therefore, I try to stay positive.
Coming to terms with the unknown and scary realities
However, this nightmare’s reminded me that sometimes I need to sit with the scary realities and unknowns of RA, acknowledging that it is scary not knowing what RA has in store for me tomorrow, next year, and in the decades to come. Perhaps if I take a little time to validate these fears, they won’t end up in my dreams, literally keeping me up at night.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?