In this autoethnography, I outline a framework for understanding illness as deviance, contextualizing general sociological theory on sick role dynamics to the specific case of chronic conditions that manifest with visible physical differences. I demonstrate two distinct ways in which chronic conditions can foster labeling and stigma. First, I explore how social norms can result in sanctions for showing physical evidence of chronic conditions. I describe sanctions I have experienced for violating conventional ideas about youth and female beauty, and associated behavioral expectations. Second, I explore how double jeopardy can result from failing to meet usual social expectations for sickness. I describe sanctions I have experienced for violating ideas of what abilities a person with a chronic illness should possess, and how they should behave in relation. I conclude by illuminating how normative social discourse can simultaneously sensationalize and efface people with visible chronic diseases.


Chronic Conditions, Illness Management, Presentation of Self, Deviance, Autoethnography

Author Bio(s)

Alexandra "Xan" C. H. Nowakowski, PhD, MPH is research faculty at the Florida State University College of Medicine and adjunct faculty in Sociology. Their teaching and research program focuses on experience and management of chronic conditions, social causes of and responses to health inequalities, and evaluation of programs and services that promote health equity. Lifelong chronic illness and a passion for social justice motivate them in advocating for others with health challenges through a variety of professional service activities. Correspondence regarding this article can be addressed directly to: xnowakowski@fsu.edu.


I am grateful to my partner in life and research, Dr. J Sumerau, for zir critical feedback and phenomenal support throughout the writing process.

Publication Date


Creative Commons License

Creative Commons Attribution-Noncommercial 4.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 International License.





To view the content in your browser, please download Adobe Reader or, alternately,
you may Download the file to your hard drive.

NOTE: The latest versions of Adobe Reader do not support viewing PDF files within Firefox on Mac OS and if you are using a modern (Intel) Mac, there is no official plugin for viewing PDF files within the browser window.