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.

Written by Alexandra Axel
Alexandra Axel was the first founding staff member at The Caregiver Space. As a New York native, Allie grew up people-watching and story-collecting, eventually pursuing her undergraduate degree from The College of New Jersey in sociology and creative writing. At The Caregiver Space, she worked with social media, graphic design, blogging, and program development to brand and grow an online community composed of, and focused on, caregivers. From the seedlings of an idea to the thriving community that it is today, Allie was there from the beginning to support the evolution of The Caregiver Space. Allie enjoys writing poetry and short fiction, devouring books, biking, crafting, urban agriculture and imperfectly cooking. She currently resides in Brooklyn with her pup, Hen.

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