“I Was Literally Just Not Myself”: How Chronic Pain Changes Multiple Frames of Identity

ABSTRACT

Though experienced by more than 1 in 5 (50 million) American adults, chronic pain is invisible, subjective, difficult to communicate, and often stigmatized. When faced with a serious injury or ongoing illness, individuals create an “illness identity” by modifying their goals and expectations for the future, adapting to impairments, and understanding new emotional reactions. The current, two-phase study uses the communication theory of identity (CTI) to explore the process of illness identity adoption in the context of chronic pain, which may be different than for more understood, less stigmatized illnesses. A focus group was conducted (N = 6), from which interview protocol were created. Interview participants (N = 23) described specific differences between their pre- and post-pain selves within three identity frames: personal, relational, and enacted. Within each frame, several sub-themes of pain-related identity changes are identified, as well how they were communicated and how they subsequently influenced communication. Additionally, three pain-related identity gaps, or ways in which two identity frames contradict each other, were identified, all created explicitly because of the onset of chronic pain: personal-enacted, personal-relational, and personal-communal. Theoretical contributions include using CTI to outline the illness identity adoption process in the context of chronic pain, identifying unique identity gaps created by this relatively widespread condition. Practically, understanding pain-related identity outcomes can help pain patients make sense of and manage their situation, and de-stigmatize the chronic pain experience.

Acknowledgments

The author would like to thank Morgan April, doctoral candidate at the University of Nebraska-Lincoln, for assistance conducting and coding the focus group in Phase One. Additionally, thank you to Karly R. Quaack and Emily M. Kaiser, both doctoral candidates at the University of Texas at Austin, for coding assistance in Phase Two.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This project was supported by a Diana Carlin Research Fellowship, awarded through the University of Nebraska-Lincoln Department of Communication Studies.