Why I Use 'Silly' Terms to Communicate My Serious Pain

I have learned many new things since my diagnosis four years ago. I now know relapsing polychondritis is an autoimmune disease which causes my body to attack all of my cartilage — and cartilage is everywhere. I never thought I’d know that, but I now know about inflammation, infusions, immunosuppressants and so much more.

I learned about costochondritis, inflammation in the cartilage of my ribs. This pain comes out of nowhere and on a pain scale of 1-10, it rates about 9,000. When it hits, I can’t breathe or move. The pain has knocked me off my feet at times. This isn’t much fun for me, but it also isn’t fun for my husband to watch when I suddenly fall to the ground and writhe in agony. As my husband and I are adjusting to this new life, I try to give my him a clue about how I’m doing on any given day with a simple “I just feel icky today but I’ll be OK,” or “Today is not good and I’m still deciding if medical intervention is necessary,” or “Take me to the hospital now!”

When I can’t breathe, however, it’s hard to give him a status update. After one costochondritis event, I described the pain as, “It’s like a ninja* snuck up on me and stabbed me in the ribs!” This became our term for my rib pain.

“Ninja pain.”

When I’m trying to breathe despite the pain, my husband will ask “ninjas?” and I’ll nod. Then he knows that there’s nothing he can do for me but wait for the worst to pass. When I can breathe again, I’ll gasp, “Stupid ninjas!” and we’ll smile a bit. If we’re in public when this happens, I’m sure overhearing a conversation that is limited to “ninjas?” a nod, and then laughter is confusing for bystanders, but it works for us.

Relapsing polychondritis has taken away the thought of pain-free days. Some days are pretty good, but when my disease is acting up and making a nuisance of itself, I may start the day with debilitating pain in my hip. An hour later, my hip will still be sore but the sharp pains will have moved to an elbow, a wrist, my big toe, or any other joint in my body. When the pain just bounces around my body, I call that “pinball pain.” It’s another shorthand term for the benefit of those around me, letting them know I hurt and not to expect much from me. “Pinball pain” days cause me to re-evaluate my to-do list. I cancel everything that doesn’t really need to be accomplished that day and go to bed early. I’m one of the lucky ones; these pains usually go away after 18-36 hours for me. Many of my friends in the relapsing polychondritis community aren’t so lucky.

So why do I use silly terms for a serious disease? I use them because I can. There are so many things about relapsing polychondritis beyond my control: the disease, the medications, the side-effects and the whole “BAM! Some new symptom appeared and your whole life is about to change yet again” thing.

I will always look for the laugh in my situation. Always.

It makes me feel like I have just a little control over a disease that is dominating my life.

*I’m sure real-life ninjas are rather nice people and that we’d be good friends. It’s these imaginary ninjas that I despise.

Follow this journey on Relapsing Polychondritis