The Chronic Pain Zine: When Language Runs Dry

While on vacation in Seattle, my friends brought me to Left Bank Books to browse the unique selection of literature. Having always had the dream to start my own, the first stop for me was the zine section. I happened upon the third issue of the zine, When Language Runs Dry: A Zine for People with Chronic Pain and their Allies. I’m ashamed to say that less than a year ago, the title would not have prompted any further interest. I wouldn’t see any reason to learn more about this group. Fortunately today I have a very different perspective. I thought about the (then) upcoming Invisible Illness Week and decided to buy the zine and see if it turned out to be of use at work.To say the least, it was. It was enormously beneficial to learn more about those facing chronic pain and invisible illnesses for my own personal growth and understanding.

Chronic pain is often invisible to the public eye because it is either seen as inherently part of someone’s identity or its legitimacy is doubted. In the interview, “A Conversation About Chronic Pain,” Shelby admits that when she was younger, she believed Cassandra’s chronic pain to be an “innate aspect of [her] being.” As Shelby got older, she was able to see Cassandra’s pain in a different light. No longer was her dad’s girlfriend a “sickly” person but someone who was suffering from a “real medical condition.”

Those fortunate enough to live without chronic pain have a hard time understanding why someone who does can’t just “snap out of it.” Anna Hamilton addresses this issue in her hand-written, hand-drawn comic strip, “Invisibly Ill: Notes Toward a Feminist Theory of Invisible Illness and Disability.” She illustrates several “invisible illness fallacies” and the suggestions others posit for explaining away her pain. Some include being more positive, reducing stress, and exercising a greater will power over the pain. These proposals might help treat acute pain or psychosomatic pain, but chronic pain is a real and persisting medical condition.

One of the many difficulties with chronic pain is its visibility in social settings. It can be easy for friends and family to forget that a loved one experiences symptoms that severely limit activity. In “Saying Yes,” Meredith Butner explains the fear she feels regarding social activities: An invitation from a friend leaves her “talking [herself] out of participation” because she is “afraid that saying yes will increase [her] pain.”

Those living with an invisible illness often are confronted by insensitive or unintentionally hurtful comments. If pain or illness is not directly visible, we tend to place the other in the “healthy” category. That unconscious categorization informs our beliefs and assumptions. In my life, I try to never assume I know anyone’s full story. There are sign vehicles that may help me guess as to what an individual does and what they to do, but I don’t let those details dictate my interaction. Because I never know if the person wearing a tailored suit and pearls cut me in line because she feels entitled, or because she is trying to get home faster to lay down and relieve the chronic pain she’s experiencing.

In many ways, caregiving manifests as an invisible “illness.” The symptoms of caregiving have little visibility and can develop into chronic conditions. Migraines, depression, fatigue, and severe stress are persistent and they are real.  Although Invisible Illness Awareness Week has come to a close, I will not forget those living with chronic pain.

Labor day weekend

This past weekend my partner and I stayed in a lovely hotel on the Northfork of Long Island. The layout of the building fostered a sense of community: close-set rooms, a wraparound porch, a lawn in the center of the development. While we were not on top of our neighbors, we were certainly very close to them.

The family next door had a boy of 11 with Autism who suffered from painful gastrointestinal problems. It seemed that the boy could only vocally communicate through yelling but for the majority of the stay he was relatively quiet and looked like he was having the time of his life. On the last day, my partner, my friend and I were sitting out on the porch, when the boy started screaming. He was trying to hit himself, to hit his head on anything he could, pulling his mom’s hair… His dad got him onto the grass so the boy could have a softer surface to hit in case he wriggled free and tried to hurt himself again.

The father tried to calm his son with gentle words and a strong hug, interrupted by cursing when his son would accidentally land a blow or kick. His mother was frantically trying to whip up something to soothe the boy’s stomach. And the child was screaming in agony, perhaps unable to communicate his pain any other way.

A curtain had been involuntarily drawn back to reveal a family struggling to be constant caregivers for their son while the rest of the world looked on and judged their performance.

After the father calmed down his son, both parents came up to us and apologized for their son. Of course they had no reason to apologize– we felt nothing but compassion towards them. However, I got the sense that the couple often feels obligated to apologize to those who don’t understand the difficulties of being a caregiver for a child with special needs. In fact, I felt the guests of the motel casting disapproving looks down towards our neighbors. Or maybe I was imagining it.

I wanted to explain to them that we felt nothing but love and compassion towards their family; I wanted to apologize for any shame anyone had made them feel for their child’s unintentional disruption; I wanted to offer a hand to help; an ear to listen. I wanted to communicate so much to them but I felt myself completely blocked off from the words. Because how do you say to a family what a society refuses to say?

Your son is represented, supported, loved, and celebrated.