How Rheumatoid Arthritis Changed My Relationship With Pain

I perched on the hard ceramic toilet seat lid, my feet turning numb from the cold tiles beneath them. I pressed the little plastic gun to the tip of my middle finger, took a large breath and held it, willing the index finger on my other hand to depress the trigger and release the spring-loaded needle. Nothing happened.

The logical side of my brain pressed its case. “This will just be a pinprick. It won’t hurt much. You have to do this. It’s too late to change your science project now.”

My memories argued right back. “It will hurt. I don’t want to do this.”

I sighed and withdrew the gun. I never feared shots, never had a problem with needles, as long as someone else wielded them. I had watched my mother test her own blood and give herself daily insulin injections for as long as I could remember. This shouldn’t be a big deal.

But it was. My sense of self preservation was too strong to willingly inflict pain on myself, no matter how inconsequential.

I gave up the fight and went to find my mother to pull the trigger for me. My science project, inspired by my mother’s type I diabetes, required checking my blood sugar before and after meals for a number of days, and my cowardice had kept me from collecting anywhere near the amount of data I needed to prove or disprove my hypothesis.

Nearly 30 years later, I sit on another toilet seat lid. I wipe a tiny scrap of fabric in a wide circle on my thigh, the sharp tang of rubbing alcohol tickling my nose. I remove the safety cap off a long thin needle, pinch a few inches of skin between my fingers, and stab the needle into my thick flesh without hesitation, slowly depressing the plunger. It hurts, but my relationship with pain has evolved in ways I could never have imagined back in my science project days.

Chronic pain came to me in my early 30s, thanks to a minor car accident that led to a not so minor rupture of a disc in my neck. Neck and shoulder pain became a frequent visitor, with occasional numbness in my arms and hands to add to the fun. Later, the discs in my lower back also began to bulge and my back ached often. I could no longer drive compact cars as my legs and feet became numb when nerves in my lower spinal cord became compressed.

I learned my stomach could tolerate almost no pain killers, from ibuprofen to opioids and narcotics. So I adjusted to a life with pain. I bemoaned “growing old,” but I didn’t know how lucky I was. My neck and back pain were chronic, but not constant, and physical therapy provided some relief.

On the brink of my 40s, rheumatoid arthritis came along and introduced me to a whole new world of pain. Pain that invaded every nook and cranny of my body. Pain that slashed and burned, ached and throbbed, sizzled and crushed. Pain that never stopped. Pain that made me cry. Pain that broke me.

As my rheumatologist began the trial and error cycle of finding the best treatment, needles and the momentary pain they caused became routine. Drawing my blood to test my reaction to the ever changing cocktail of drugs. Injecting new vaccines to bolster my immune system against infectious diseases that I was now more susceptible to thanks to the immune suppressing drugs I had to take.

The nurses always watched me closely to test my reaction to the sharp, thin instruments so many people fear. I sat still and calm, sometimes watching the needle enter my skin, other times looking away when it stung from less experienced hands.

When my doctor asked if I could give myself injections, I thought back to my science project days but shrugged my shoulders and said it would be no problem. When she asked if I could endure monthly IV infusions, I just nodded and watched as they put the needle into a vein in my hand, not even wincing when the needle burned and the fluid flowing up my arm seemed to throb in my vein.

My relationship with pain has changed. As a woman at the height of her career and a mother with young children, I can’t afford to withdraw from the world, no matter how the pain, the growing struggle with mobility and the fatigue weigh me down. So I have learned to cope, most of the time.

Most of the time, I can distract myself from the pain, with work, with household tasks and with my favorite escape, books. In the midst of my busyness, I take note of the pain. I look down at it as if from a great height. I examine and acknowledge it, but I put it in a box off to the side. I refuse to let it stand in the center of my consciousness and take over my thoughts. I am outside of myself, outside of my body, and my pain is something “other.”

But other times, there is no escape. The pain is so intense, so widespread, that it is everything. It is no longer “other.” It is not inside me. I am inside the pain, and I can’t get out until it lets me. These flares have become predictable, but unavoidable. Inside them, I want to rage and sob and curse life’s unfairness. I want to break something like I am being broken.

So when the nurse presents the needle to insert under the tender, transparent skin of my hand, I don’t flinch. I welcome the sting.

When I raise a needle over my own thigh and thrust it down to break through my flesh, I almost sigh in relief.

After so many trials, my doctor has finally found a drug that helps, and any short-term pain it inflicts is worth it to reduce my pain to something I can manage. Something I can set aside and pretend isn’t there.

I’ve accepted the best I can hope for with this disease is a state of uneasy coexistence, where pain will always live in me, but I will not always have to live in it.