Writing Chronic Illness
with Margo Steines
May 24, 2023 | 6 Weeks |
Text and Live Video
“Physical pain has no voice, but when it at last finds a voice, it begins to tell a story.” -Elaine Scarry, The Body in Pain
Chronic illness is a physical experience, but also a narrative one. Our understandings of selfhood and what happens to our bodies over time coalesce into the way we understand the experience of being ill—and the experience of being alive.
For many people, becoming sick and living as a sick person brings with it the desire to understand lived experience through narrative. Whether it is through a narrative medical history or an illness memoir, the impulse to start at one truth and travel to another one can feel urgent, and creative nonfiction offers a container for the sharing and exploration of illness.
Linear recovery narratives tend to begin with crisis and uses hope and grit to travel a narrative line that arrives at redemption, but the lived experience of chronic illness is far more fragmented and far less directional. The flares and remissions of chronic illness refute that linear narrative and demand different understandings of how our bodies move through time. There is no tidy way to write about chronic illness. In this work, the craft challenges include the handling of time, of evolving knowledge, and of shifting realities.
In this six-session generative course, you will explore the ways traditional narrative structures influence medical understanding of what it is to be sick and what it is to be well. Working in the creative nonfiction form of your choice (from personal essay to braided essay, op-ed to memoir), you will begin to write your own illness narrative, using the truths of the body as a tether to larger human truths. Each week, you’ll be asked to write pages toward the draft that you’ll workshop during our last session.
Learning and Writing Goals
In this class, you will:
- Deepen your understanding of the relationship between narrative structure and the experience of being chronically ill
- Develop skills at writing about abstract symptoms and diffuse conditions
- Learn how to treat the “narrative chaos” of chronic illness on the page
- Gain a more nuanced consideration of how privilege and marginalization functions in the medical space, and how those factors appear on the page
In this class, you will:
- Have a working draft of either a short essay or op-ed, or one chapter of a book-length work of creative nonfiction
- Have a new toolbox of writing prompts and exercises that will serve you in your work moving forward
Class will meet for 90 minutes per week, on Tuesdays from 7-8:30PM Eastern time starting May 30. Our sessions will include a group process talk, a lecture and/or craft discussion, reading discussion, and synchronous writing time.
Week One: Intros + Overview
What is chronic illness, and why do we write about it? This week, we’ll begin to explore how to translate our lived experiences with our bodies into literary work.
We’ll talk about some of the literary elements of chronic illness narratives: memoir, immersion research, cultural criticism, reportage; and we’ll discuss how to use these elements to create a powerful illness narrative.
The work for this week will be to write the short version of the illness narrative you want to develop. We start this way so that you have the bones of your work set before you begin building on them, and so the scope of what you want to do is defined from the start.
Week Two: Narrative Chaos and the Problem of Time
This week, we’ll focus on how to structure a narrative for a non-linear experience.
A linear chronology of chronic illness is reductive—it is by nature an experience of flares and remissions, ebbs and flows. But a report of medical ups and downs quickly becomes dull and numbing for the reader. So what do we do, on the page, to elevate our narratives beyond “this happened and then this happened”? We’ll spend this week learning and developing answers to that question.
The work for this week will be to create a timeline of the chronology of your illness narrative—we need to understand chronology before we disrupt it. This will overlap a lot with the outline you made last week. That is intentional, and we’ll circle back to your outline.
Week Three: Tell Me Where It Hurts: Writing Symptoms
Putting your symptoms into words is one of the more challenging aspects of depicting the experience of chronic illness to a reader. This week, we’ll learn hard skills for writing the body and the diffuse symptoms that many chronically ill people experience.
When we experience physical symptoms, they feel very clear to us. But, often, as soon as we attempt to translate them into words, we are faced with the failures of language. Pain becomes diffuse and unutterable, and we are left with vague metaphors or umbrella terms that are imprecise and do not paint a complete, accurate picture of our experiences.
The work for this week will be a Method Writing exercise called the Image Moment. It asks you to craft an instant of narrative time that describes every single aspect of the image of that moment, from your surroundings to the sensory experience of your body, using all your senses and a rich painting of description. Then, we’ll talk about how to use the Image Moment as a tool in your narrative work.
Week Four: From PubMed to WebMD: Research in Illness Writing
How do we use formal and experiential research to support and add texture to our personal narrative? How do we interrogate our own experiences in the context of medical knowledge, especially when there is a discrepancy between the two?
Many memoirists are not explicitly interested in research, but personal narrative is strengthened by contextual engagement with the world. Mapping your memoir onto existing medical knowledge—particularly if your illness narrative deals with mysterious symptoms, difficulty with diagnosis, or medical gaslighting, as so many do—affords you an opportunity to critique the medical system and to situate your experience within what we think and know about how the body works.
The work for this week will be to home in on body and symptom writing, relying on research to add context to your lived experiences. You’ll pick three symptoms to research and write about. For each one, you’ll do a deep dive into exactly what it is, on a medical level, and then you’ll write a “life story” of your experience with it in great detail.
Week Five: Who Gets Sick, Who Gets Well, Who Gets Heard
Writing about positionality, privilege, and the medical system is part of writing about chronic illness.
So many narratives of chronic illness deal with medical gaslighting, medical trauma, and a profound sense of not being listened to. It is notable that so many of these voices are women’s voices—and that so many conditions that disproportionally afflict women are relegated to skepticism by the mainstream medical establishment. For POC—WOC in particular—this effect is magnified, with statistical evidence pointing to doctor’s disbelief in Black people’s pain as well as women’s pain.
On a craft level, we’ll delve into how to approach things like our access to medical treatment, our positionality, and how we are or are not believed based on our appearance and affect. What words do we use to describe ourselves and our symptoms—our own? A doctor’s? Can we create an intimate language to share with our reader that frames our experiences in our own words?
The work for this week will be a series of prompts that will ask you to consider where you have held power, where you have not, what these experiences have been like for you, and what meaning you can make out of them as a cultural critic.
Week 6: Workshop
This week, we will workshop our drafts using the Critical Response Method.
Student Feedback for Margo Steines:
Margo writes with insight and incisiveness you feel in your gut. Reading her work reminds me that I am human and alive and not alone in feeling what I feel. It’s a privilege to read Margo and also to be edited by her. She’s a thoughtful editor who possesses both empathy and sharp instincts, which do not always appear in the same package. She knows how to ask you thought-provoking questions about your work that lead you to your own solutions. Rachel Reeves, journalist
Margo is an extraordinary teacher, with extremely helpful lectures, writing prompts, and course structure. This was one of the most helpful workshops I have ever participated in. I found her extremely generous and accessible with her time, and she created a class atmosphere that felt respectful and engaging. Highly recommend! Mary Simpson