HUMOR AS (NARRATIVE) MEDICINE:
An Autoethnographic Study of Familial Multiple Sclerosis |Alyse Keller Johnson
Abstract
This autoethnography examines how humor functions as a form of narrative medicine in my family living with maternal Multiple Sclerosis (MS). Drawing on interviews and personal experience, I describe how humor became a primary mode of communicating through disability and chronic illness for my family. Beyond coping, humor enables us to move through the illness experience, making it part of my family’s everyday norm. Humor operates as metaphor and method: it reframes difficult experiences, resists pity, offers relief, and deepens relationships. These four functions of reframe, resist, relieve, and relate create alternative narratives of disability and chronic illness, opening new possibilities for families confronting chronic conditions.
Keywords: humor, narrative medicine, multiple sclerosis, disability studies, health communication
Introduction
Humor has long been how my family communicates, and it became a natural way to move through the stress of Multiple Sclerosis (MS). MS is a chronic autoimmune disease that manifests in both cognitive and physical disabilities. Because both my mother and paternal grandmother had MS, every child in my nuclear and paternal extended family grew up with a mother with MS. These lived experiences offer a unique context for examining humor in families living with maternal MS.
Over the course of 4 years, I conducted an autoethnographic study of my family’s experiences living with maternal Multiple Sclerosis. This involved observing my family, conducting ethnographic interviews, taking extensive fieldnotes, and building on my prior ethnographic and narrative work on chronic illness and identity (Johnson, “MeSsy Identities”; Keller, “Regenerative Narrative”). I extend on my previous work to examine how humor mediates experiences of maternal MS. This autoethnography offers a different perspective on humor, which is often framed as a coping mechanism, and instead frames it as a relational/narrative practice operating through four communicative functions.
Literature Review
Families living with chronic illness learn how to be and act through the relational and cultural constructs produced and reproduced through communication (Jorgenson and Bochner 514-15). Communication and narrative are at the root of family experiences and key components in constructing a sense of belonging in families. Life with MS is ever-changing, and there are not many cultural examples of how to live and communicate through it. Therefore, families like mine must develop their own understanding of illness experiences and adapt to the ongoing and shifting nature of accommodation.
Humor and Disability as a Counter-Narrative
The tragic frame is the dominant narrative that presupposes how we imagine disability and illness. People with disabilities or chronic illnesses are often framed culturally as tragic figures who come to serve as a reminder and reaffirmation of able-bodiedness. Sadly, we’ve become accustomed to this master narrative of disability and assume it to be the norm. Master medical narratives like this offer little room for individual stories and experiences. Like my family’s, those that exist at the intersection of illness and humor can serve as counter-narratives to the predominant medical narratives that dominate these discussions of disability and illness.
Counter-narratives, by nature, subvert prevailing dominant narratives and social norms. The term counter-narrative is used “to describe a cluster of histories, anecdotes, and other fragments woven together to disrupt stories of domination” and replace an oppressed identity with one that elicits respect (Harter and Bochner 6). The counter-narrative is where I situate my family account in order to expose and contest the conditions that create disenfranchisement, specifically for people living with disability and chronic illnesses.
Arthur Frank’s work on illness narratives speaks to this perspective, showing how such stories resist dominant biomedical framings by foregrounding lived experience (xii). For instance, Frank’s concept of the “chaos narrative” (97) and “quest narrative” (115) illuminate how people remake meaning through storytelling. In this sense, my family’s humor-driven storytelling embodies both a counter-narrative and a quest narrative, reframing the illness experience as a shared process of navigating how to live well.
Other narrative and communication health scholars have emphasized that counter-narratives of illness not only resist dominant cultural scripts but also remake the possibilities for identity and community (Dutta and Basu 332; Sharf et al. 42). My family’s use of humor engages this narrative reconstitution by resisting pity while redefining belonging for us all.
Humor and Communication
Humor in the field of communication studies has been widely applied across various disciplinary contexts, examining its interpersonal, group, organizational, and familial functions (Lynch 437; Meyer 311). It has also been studied extensively in the context of medicine and health communication (Martin 511; Sobel 1114; Beach and Prickett 791; Schöpf et al. 374). Research on the intersection of humor and health examines the diverse health benefits of humor, including stress relief, enhanced interpersonal connections, and improved coping mechanisms.
However, just as every disability and illness experience is unique, the use of humor in health contexts is as well. Much existing literature on humor and disability specifically discusses humor as a way of normalizing or coping within the family’s experience (Brooks et al. 152; Sparks et al. 340; Lyons et al. 599). As such, in this manuscript, I propose that humor serves as more than just a coping mechanism; it is a means to step back and offer a reimagined mode of communicating and living for families dealing with chronic illness/disability.
Humor and Disability
In disability studies, disability is understood as another way of being in the world. I approach my understanding of MS from the theoretical perspective of the cultural model of disability. By focusing on the cultural model and its “account of the world negotiated from the vantage point of the atypical,” patient-oriented counter-narratives become one way in which accounts of resistance and “atypicality” gain traction (Berger 29). Humor has the ability “to empower and counter the tragedy narrative of disability, to resist and fight back against disabling humor.” In this way, disability humor can “function as a mediator of social experience, a method of social analysis, and a strategy of social activism” (Bingham and Green 95).
Bingham and Green employ four major models/theories to understand the intersection of humor and disability specifically. The four humor theories by which they situate their analysis are: Superiority theory, Relief theory, Inferiority theory, and Incongruity theory. They specifically examine how comedians with disabilities have used performance to discuss topics related to disability through a comedic lens. Their work represents an important step toward integrating disability and humor.
Building on this, I use their four models of disability humor as a starting point to understand how humor is used in my family when communicating about chronic illness and disability. I specifically explore how my family members utilize comedy and humor in their everyday interactions and stories to communicate about their experiences with illness.
Data and Methods
This study uses narrative autoethnography as a means of understanding my family’s and my own experiences with maternal MS. I use autoethnography as a method because it allows me to write narratively through my own experiences, as well as the experiences of my family members, and connect our stories to wider cultural, political, and social meanings (Ellis, Ethnographic I 37). I drew on four years of participant observation fieldwork and informant interviews (Lindlof and Taylor 104) to build a fuller and richer autoethnographic account. My research participants for this study are my family members, between the ages of 20 and 80. My nuclear family is comprised of my mother, Dee, my father, Jeb, and my sister, Anna. My paternal grandmother passed away in 2002, but extended family members I was able to talk to consisted of my Aunt Betty, Aunt Kitty, Uncle Burt, and my grandfather, Papa Kelly.
I conducted informal ethnographic interviews with my family over four years, including ten ethnographic interviews with nuclear and extended family members (initially remote, later in person). All interviews were audio-/video-recorded (45–120 minutes) and transcribed with laughter/pauses noted. Using an interview guide informed by narrative theory, I invited family members to tell stories about maternal MS, focusing on how chronic illness shapes our lives and how we communicate about it.
To ensure anonymity and ethical compliance, once interviews were conducted and transcribed, all audio recordings were deleted, and names were replaced with pseudonyms. Additionally, all interviews with my family members were approved individually through informed consent forms, and my research was ultimately deemed exempt by my institution’s Institutional Review Board (IRB exemption letter can be provided upon request).
I acknowledge, though, that relational ethics go beyond formal ethical procedures, especially when it comes to writing about one’s own family. Thus, I approached this work with ongoing reflexivity, balancing the dual roles of researcher and family member, striving for what Ellis (“Telling Secrets”) calls “ethical mindfulness” (4), such that there is no true “privacy” in writing about one’s own family. I recognize that any act of representation inevitably exposes those relationships and requires ongoing negotiation and care. Autoethnographers must continually negotiate the ethics of representation in their work, particularly when relational boundaries, such as those of one’s own family, are blurred (Adams et al. 5).
Findings
Across my family’s narratives, humor works in four concrete ways: it reframes difficult moments into new meanings, resists scripts that cast disability as tragedy, relieves emotional strain through laughter, and relates us to one another by making hard talk possible. (Developed further in prior work; see Keller, “But Why” 127). By approaching family and health communication through the lens of humor, I create space to reimagine what family means in the context of chronic illness/disability, and how humor functions as (narrative) medicine for my family.
Humor as Reframing
After days of interviewing my family members individually, I finally gathered them together in one room. I pose a broad question, hoping they will all contribute their unique perspectives.
“Can you think of examples or stories in which humor was a part of the way that Grandma and the family dealt with her illness? I know being funny was an inherent trait of hers…”
My dad chimes in, “Well, you know, Alyse, I will say it is so much the same as you and your sister relate to your mom. You know, the self-effacing kind of humor? My mother was the same. Some of the things your mom does are exactly like what my mother did. You know, saying strange things she knows are funny that she probably should not be saying, but goes ahead and says them anyway? Grandma would do that, too. When she was sick, she threw zingers in there every once in a while that nobody was expecting.”
“Really? Like what?” I ask.
“Well,” he pauses to think, “My mother did not lie very much, but I remember this person coming to the door once. She must have been selling Avon, and your grandma was already irritated by her because she was acting pretentious and kept mispronouncing ‘potpourri’ as ‘POT-pori,’ emphasizing the ‘pot.’ Grandma did not have it and tried to correct her by saying, ‘It is potpourri if you must know.’ However, the woman ignored her and continued trying to sell her items.
Grandma did not have the energy to be cordial, so she interrupted the Avon lady, sighed, and said, “You know, I am so sorry, but I have a terminal disease, and do not have much time left, so I need to go back in the house,” and closed the door on the lady. She came back inside and was like, ‘Well, I feel bad, but I got rid of her by telling her I was dying.’ She giggled and then proceeded to her regular business. So, zingers like that.”
***
Humor as an act of reframing focuses on transforming a challenging experience into something one can laugh about. As my father Jeb notes, his mother’s ability to add “zingers” shifts the conversation's focus away from her. My grandmother’s humor let her take control and reframe the situation on her own terms. Rather than allowing an experience or story to dictate how my grandmother or mother defines themselves, humor works to reframe their identity. This allows them to rearrange the way they see themselves and the way my family approaches their illness. The use of humor allows us all to reframe painful situations and experiences.
Humor as Resistance
In the face of my mother and grandmother’s most difficult moments, my mother, grandmother, and family members have used humor to resist the sadness that can accompany the illness experience. I have personally used humor to resist on behalf of my mother. I know this has the potential to hinder my mother’s voice and perpetuate stereotypes of the passive disabled person who cannot speak for herself; however, I also know this resistance can be productive. As such, I see humor as a form of resistance, a communal way for my family to push back against reductionist stereotypes.
***
Dozens of women in their 50s surround me. I am lost in a sea of bright pink and green dresses. I park my mother’s wheelchair at her designated seat and walk away from the table for a moment before a woman intercepts me in one of the bright, patterned dresses.
“OH MY GOD!! Alyse, is that you?”
With false certainty in my voice, I respond, “Yes! Hi…” My voice trails off. I have no clue who this woman is.
In a slow, slurry response, “It is meeee, So-And-So’s Mom! I have not seen you in years. You look wonderful. How are you?”
“Oh yes!” I quickly plaster a smile on my face, feigning recognition, “How is So-And-So?”
She begins to slur more words when, suddenly, in a tone of forced compassion, she asks, “Oh, (long pause), how is your mother doingggg?”
I courteously but ambiguously respond, “She is doing well.”
“Oh, good, good, good. Your mother is just so sweet. What a nice woman.”
I respond, “Yes, she is. So…sweet.”
I return to my mother and sister and sarcastically whisper, “That lady over there said she thinks you are just the sweetest, Mom.”
My mother smirked at me and replied, “Well, I just am, Alyse.”
My mother, a genuinely kind and compassionate woman, is also dynamic and utterly sassy. However, sweet is often the only word I hear people use to describe my mother, grandmother, and many individuals with disabilities, who are reduced to innocent or infantilized stereotypes without a backbone or opinion.
“I have decided my new response to people when they say, “Your mother is so, so sweet,” is to respond ‘Really? That is funny because that is not what the inmates said about her before she got released.’ What do you think, Mom?”
We laugh. My mother takes a sip of her drink, looks back at me, and says, “Make sure you say my name was Big D in jail.”
I smirk and say, “Deal!”
***
In these specific instances, humor resists the idea that my mother is merely a “sweet” disabled woman and defines her as more. As Garland-Thomson notes, "female, disabled, and dark bodies…are portrayed as helpless, dependent, weak, vulnerable, and incapable bodies. Women, the disabled, and people of color are always ready occasions for the aggrandizement of benevolent rescuers" (20). Again, the point is that these utterances of pity, masked as kindness, often serve as discursive disassociations from people like my mother, whom they perceive as living a less desirable life than their own. Humor as a resistive mechanism provides our family with a sense of agency in the face of stereotypical constructions of disability. For me, it becomes a way of defending my mother and a way for us to use humor to push back together.
Humor as Relief
When humor becomes a tool for relief, it refocuses its purpose as an outlet for emotional release. It becomes a means of communication through shared experiences.
Uncle Burt starts, “I always worried when she went out without us. There was one time she went to a high school reunion, and she was in a wheelchair by that time. I was, of course, concerned, but she trusted the people going with her, so she went on her own. It was friends she had not seen in many years. These people were expected to push her in the wheelchair that night, and there were probably some who were unfamiliar with wheelchairs. Many people like to think they know wheelchairs, but sometimes they just don’t. I don’t know exactly what happened, but apparently, whoever was wheeling your grandma either hit a step, a bump, or something, causing the wheelchair to start tipping back. The whole thing went backward, and she hit her head. She must have gotten a concussion because about twenty minutes later at the party, she threw up all over her dress.”
Uncle Burt says, “Yeah, it was not a good scenario; I think it is the only reunion she ever went to. No surprise. But she came back home and was telling me the whole story and got to the end and said, ‘Other than that, I had a great time!’ And so all we could do was laugh”
***
Humor functions as an outlet for sharing and processing experiences. This type of humor “can be used to put others at ease with the issue of disability in order to get them to move past the impairment to other things” (Bingham and Green 101). This type of humor counteracts pity by showcasing my grandmother’s ability to poke fun at herself and her family's willingness to embrace this self-deprecating nature. This is just one way our family utilizes the power of humor as an outlet in the face of disability experiences. Laughter and humor offer moments of relief and provide an opportunity to break from the emotional chaos of disability and chronic illness
Humor as Relational
My sister and I have lived our entire lives with a mother with MS. Our relationship with one another has always relied on humor. However, throughout our interviews, we realized it was the most integral part of how we communicate about our mother’s illness with each other and those outside of our family.
Our ‘interviews’ quickly became shared storytelling. Humor made complex topics tolerable and underscored our connection.
“Okay, where to begin?” Anna starts, “Well, you know I always say, you wipe your own mother’s ass, and the word awkward does not apply to your life anymore.”
I roll my eyes and respond, “Right, naturally, the perfect place to start our interview, Anna.”
Humor as a form of relating means connecting and communicating interpersonally. This may seem redundant, but we often sterilize experiences in interviews. This never happened with my sister, as evidenced by the beginning of our “interview session.”
“Well, one of the most difficult stories I remember about Mom was at our cousin’s wedding. Mom had another bowel accident. Those incidents always hurt my heart. We were in the photo booth, having such a fun time, when she said, ‘I have to go,’ but her face was so defeated, and we all smelled it. No one cared, but she did, and I hate that. I hate it when she apologizes after you clean her up. Or, when she got on the toilet, she put her face in her hands, and it is in those moments I hate MS the most. I hate that it makes her apologize because she has nothing to apologize for and no one to apologize to. If anything, she deserves to have more accidents. Every parent on this planet deserves that right after their children are grown. Then their kids can clean and change them, just as they had to do for us thousands of times. It is like payback for all the times we screamed, ‘I hate you!’ as teenagers. Parents can turn around and be like, ‘Remember when you were 15 and you said you hated me and acted like a child when I did not allow you to go to that inane movie?” Well, you are definitely going to hate what you see in my undies in a minute.’ And then the circle of life would be complete!
And that’s where you would cue the Lion King music, Alyse.”
***
People have often accused my sister and me of using humor as a crutch or a coping mechanism. Like Bingham and Green, instead of using the word “coping,” I state that we “use humor as a way to encounter an environment [which] provides a different frame, one that takes into account the complexities of interpreting, analyzing, and navigating situations” (19). I have never thought humor hindered our ability to communicate; instead, humor has enabled not only my sister and me but also my entire extended family to communicate about what it is like to live with MS.
In addition to the humor that is shared relationally, we both engage in self-humoring as a narrative act. Self-directed or self-deprecating humor allows us both to confront vulnerability, to own our complicity in the family’s illness narratives, and to maintain a reflective distance still. In laughing at ourselves, we participate in the same narrative resilience that my family enacts. By viewing humor as an active process of encountering and a means of communication through experience, it becomes a relational process that significantly influences how families, including my own, define themselves. Humor can break the harshness of reality. Embracing laughter and humor creates relational possibilities when it sometimes feels like there is only impossibility.
Discussion
With these functions and new narratives of familial disability, I illustrate new ways of being “family” in the face of chronic illness/disability. The interviews and narrated experiences with my sister, mother, father, and extended family members represent how humor functions to point out societal misunderstandings or misconceptions of the disability experience, to poke fun at each other and the experience, to critique and counter what some feel needs to be the political correctness of humor and to understand that political correctness has a time and place. Humor ultimately becomes (narrative) medicine for my family.
Borrowing from Harter and Bochner, I assert that “by invoking narrative practices, narrative ethics, and narrative theory to healing practices, [we] offer images of how to live well in the midst of inescapable suffering, trauma, and disability associated with the lived experience of illness” (114). Labeling humor as (narrative) medicine can be an instructive framework for understanding communication about chronic illness and disability in families. Humor becomes another way of knowing and understanding medical and illness experiences. This builds upon my argument that narrative and performance can serve as sites of healing (Keller, “Performance as” 63; Johnson, “Your Mother” 51). Although I distinguish humor as a counter-narrative from humor as coping, I acknowledge that these functions are not necessarily opposed. Instead, humor can simultaneously comfort and critique, helping us manage the emotional demands of illness while also resisting the social scripts that define what illness “should” mean. This dual role reflects the paradoxical nature of humor.
The chronicity of MS can fracture relationships and stories. As I piece together my family’s narratives, we use humor as the glue that binds us and our stories together. As we deconstruct, reconstruct, and reframe illness experiences in relation to one another, we use humor as a means to understand how MS functions within our family and how it has impacted our experiences. Through comedic vignettes and “sketches” of traumatic incidents in our lives, we rewrite our understanding of those events and each other. We view laughter as a means to navigate these experiences and as an alternative space to explore the “normalcy” of our familial dynamics within the particularity of our lived experiences.
The examples of humor used in my family can be viewed as “tools in the arsenal available [to family members] who seek to use humor to push back against the disabling assumptions, beliefs, and actions of people living in the ableist world” (Bingham and Green 116), as well as tools for living well. Humor is not a way to mask sadness or suffering. Instead, it does productive work, guiding one in a new direction as one may navigate complex or confusing experiences (Lanphier). Therefore, humor can help us perceive things in ways that were previously unavailable to us.
In doing so, my family’s humor performs the very work of counter-narration, rewriting the master narratives of tragedy and pity that often structure disability discourse. Underlying this is a sense of familial pride, a recognition that our use of humor not only resists tragedy but also affirms our capacity to live well and meaningfully with disability.
Conclusion
Humor offers my family a way to navigate disability and illness as ongoing processes rather than conditions to be overcome. Across these narratives, humor functions through four communicative dimensions—reframing, resistance, relief, and relationality—which illuminate how laughter and storytelling sustain familial connection in the midst of chronic illness.
All four of these “humor paradigms provide an interpretive lens through which individuals can be encouraged to bear witness to the unexperienced and to reframe their previous ideas of normality” (Bingham and Green 116). Humor relies on an understanding of context, a relational sensitivity towards others, and a keen ability to listen. As such, humor as (narrative) medicine serves as an example of how empathy, understanding, and compassion are practiced communicatively in families living with chronic illnesses.
Humor not only acts as a communicative practice for families living with chronic illness and disability but also becomes a way to challenge normalized depictions of what a family should be or how it should act. Humor serves as a counter-narrative, an everyday way of contesting master narratives that pathologize disability and affirm alternative ways of being.
I argue that using humor in storytelling is an example of how to “live well” with familial MS, and I see humor as a tool to understand and challenge hegemonic narratives of disability and chronic illness. These humor competencies work together to form new narratives for disability and chronic illness, which in turn can open new possibilities for families faced with them. Humor becomes a comedic counter-narrative, a counter-(narrative) medicine for my family and me.
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Alyse Keller Johnson, PhD, is a writer and associate professor of communication studies at CUNY Kingsborough Community College in Brooklyn, NY. Her work lives at the intersection of story and embodiment, exploring how narrative can create spaces of healing, connection, and reflection. Much of her inspiration comes from her own and her family’s experiences with illness and disability, particularly multiple sclerosis, and from her own journey of learning to hold grief through storytelling. She facilitates workshops that invite others to share their own narratives of health and illness. More about her projects, performances and writing can be found at www.alysekellerjohnson.com.