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Telling Stories About Rare Disease & Chronic Illness

Telling Stories About Rare Disease & Chronic Illness

I recently lucked into an invitation to give a presentation on storytelling to a group of patient families at KIF1A.org’s second-ever family conference, and it prompted me to reflect on what I’ve learned over the years from producing and telling stories about being sick.

The invitation came from Luke Rosen, who founded KIF1A.org with his wife, Sally, a few years ago, after they discovered their daughter, Susannah, has a mutation in her KIF1A gene. I met Luke last spring when I called him from a list of potential storytellers provided by the Chan Zuckerberg Initiative, with whom Story Collider was working to produce a show on rare disease in Aspen, Colorado, last June. I told him about the show and asked him if he had a story. It turned out that yeah, holy shit, he had a story. You can hear it here today. (Just to give you a sense, the first line is: “A researcher once told me never to tell this story.”)

Luke Rosen and his daughter, Susannah

Luke Rosen and his daughter, Susannah

We also discovered that we lived just blocks away from each other in New York City. So after he performed in our Aspen show, I told him I was moved by his story and I wanted to stay in touch, help out however I could. While I am not terribly useful, I am capable of talking at length about storytelling, for what that’s worth.

So, last Saturday, I made my way to the Hammer Building on the Columbia campus at 8:30 a.m. to do just that. That’s right. I got up before 8 a.m. to be somewhere on a Saturday morning. That’s how powerful a story can be, folks. You find yourself compelled to do things you never thought possible.

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A theme throughout the morning was: “Be proactive in sharing your story.” KIF1A.org’s Shannon Scott put up prompts like “What is the most challenging aspect of living with KIF1A?” and the parents wrote their responses on Post-Its they stuck underneath. I was struck by this one, under the prompt, “I want researchers and doctors to know ____”: My kid’s name.

The emphasis on the importance of telling their stories made sense to me. Although the number of patients diagnosed with KIF1A has been increasing as awareness grows (at their first meeting two years ago, KIF1A.org had only a handful of families; this year, check out the crowd in the photo below), it’s still a rare disease.

The 2019 KAND Family and Scientific Engagement Conference at Columbia University here in New York.

The 2019 KAND Family and Scientific Engagement Conference at Columbia University here in New York.

And rare diseases don’t receive as much attention from researchers and funders as diseases that affect larger populations. Fewer people have heard of them or are directly connected to them in some way, and for pharmaceutical companies driving research and development, they don’t represent the kind of potential profit that a bigger customer base would. The best way to compensate for this is to tell a compelling story that will connect with folks on an emotional level. To make them feel as if they know you, and create that direct connection they’re missing.

I can see other benefits of telling stories about rare diseases:

  • Sharing these stories could raise awareness that could lead to more diagnoses. If more patients are diagnosed, they can find communities like KIF1A.org and receive better care.

  • Stories are data. They’re a way of conveying valuable information to the medical and research communities as they try to understand these rare diseases and what it means to live with them or care for those who do.

And there are other, perhaps more abstract, reasons to tell your story. For one, telling your story helps you connect and find community. For the first two years of my chronic illness, I struggled with how to talk about it, even with close family and friends – in particular because it’s a condition that involves, shall we say, “the lady parts” (I think that’s the scientific term) and some of the symptoms are sexual. I became increasingly isolated and lonely -- not just because pain often kept me home but also because I didn’t know how to explain what I was going through in a way that didn’t disgust or burden or bore or evoke pity in the people around me. Everyone knows that feeling, of wanting to see the glint of recognition in a friend’s eyes and seeing instead that they’re glazed over or darting around uncomfortably.  That feeling that means you haven’t connected, you haven’t been understood. Even the feeling of seeing someone’s face twist in sympathy is unpleasant, and strangely demeaning. I didn’t want sympathy; I wanted connection. But that felt impossible since the only people I knew with the same condition were my mother and grandmother – who are very supportive and helpful but not really the ideal people for me to discuss my sexual dysfunction with, in my personal opinion.

When I got to a point in my illness where I had accepted my circumstances and was able to look at my story like an editor, I tried applying what I had learned about storytelling, and ended up crafting what became my first Story Collider story – as well as a Moth StorySLAM-winning story and a short film by Columbia College filmmakers Kris Campa and Sean Hills.

On the Story Collider stage for the first time in 2011!

On the Story Collider stage for the first time in 2011!

After so much isolation, it was powerful for me to see audience members laugh along with me at the embarrassing moments, gasp at surprises, and tear up in the sad moments. It’s a cliché, but I felt “heard.” And that’s a genuinely powerful feeling – powerful enough to reduce suffering for many people.

Every single time I tell my story on stage, someone from the audience comes up to me afterwards and tells me they have the same condition. Every single time. And almost every time, I’m the first person they’ve ever met who has it.

But even aside from these connections, the process of writing, editing, and telling my story was valuable in and of itself. When you write and edit a story, you’re connecting events with causality. You’re thinking about what they mean. And the way that we interpret our pain matters. Dr. Richard B. Hovey writes in the Canadian Medical Association Journal, “Reflective interpretive practice helps me to acknowledge and understand that there is life after pain, but I find I have to actively seek it out, challenge unhelpful thinking and confront hopelessness. This is such a relief for a person living in chronic pain. It liberates one from the scientific tyranny of medical pathologic narratives and opens up a means to live more — or again — as a person with a place in the world.” (Thanks to my Story Collider codirector, Liz Neeley, for sharing that paper with me.)

Sadly, we can’t just expect audiences – whether they’re researchers, potential donors, journalists, or a theater full of ticket-buyers -- to be clamoring for our stories. We have to motivate our audience. We have to create ideal conditions for them to be good and active listeners. It’s not really fair that we have to do this work —we’re the ones who are sick, after all—but if you’re chronically ill, my bet is you’re probably already familiar with the fact that life isn’t fair.

So here are my five best pieces of advice, based on my experience telling and producing stories about illness, and what I shared with the KIF1A.org families last Saturday.

5 Tips for Telling Stories About Medical Conditions

1.      Find your arc

The arc of your story is how you change from the beginning to the end of the story. The arc is the backbone of your story – that thread the audience follows from start to finish. It can usually be summed up by a dramatic question – the question that we, as the audience, have in our minds as we listen to the story. For instance, in Luke’s story, it’s “Will Luke be able to figure out what’s causing his daughter’s seizures?” In mine, it’s, “Will Erin’s relationship survive her chronic illness?”

Some more examples from Story Collider stories about chronic illness:

  • Will magic mushrooms help cancer survivor Gail Thomas reconnect with the world?

  • After a life-saving stem cell transplant compromises her immunity, will scuba diver Barbara Abernathy ever be able to return to the ocean she loves?

  • Will comedian Sandi Marx be able to prevent cognitive symptoms of lupus from robbing her of her trademark quick wit?

It’s a question that we, as the audience, want to answer with, “Yes!”

For some folks, it’s easiest to start with this dramatic question. For others, like me, it helps to free write for a while and see if I come across a common thread. Either way, it’s important that this central question be present in every moment of your story – every line, and every scene, should be in service to it in some way.

When your dramatic question is clear, it creates tension in your story – that riveting, edge-of-your-seat feeling of uncertainty and suspense.

Even more so if we clearly understand:

  1. What’s at stake (what happens if things go well vs. what happens if things go right)

  2. The obstacles that might prevent us from resolving the dramatic question in a satisfactory way

Remember this equation:

A clear dramatic question + plus clearly defined stakes and obstacles = tension

Or better yet, this photo:

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This is the perfect picture of a story. The dramatic question is clear – will the cow get to the other side of the fence? And I think the stakes and obstacles are also apparent. (More on this here.)

2.      Be relevant to your audience

Of course, it’s impossible to fit your entire experience with this illness into a five-to-twenty-minute story. It has affected your life in too many ways. You need to pick one specific arc for your story – focused on just one (or possibly two, if they’re intertwined) of the many ways you changed over the course of this experience.  You may develop several different stories about the same experience -- storyteller Gail Thomas, who I mentioned above, has told two stories from her experience with cancer on our stage, each of them very different and with very different arcs. It’s even possible to come up with several story arcs for one event.

To choose an arc that’s relevant to your audience, I suggest thinking about how your disease has affected:

  • Your dreams and goals

  • Your relationships

  • Your everyday life

In my opinion, these things are what most audiences outside of your patient group will relate to. Most other folks can’t connect to litanies of medical appointments or even descriptions of pain, and they have a hard time engaging with things that feel outside their experience. And at Story Collider, we have a guideline that we give our scientist storytellers: Only include as much science as is necessary for the audience to understand the plot. The same is true for those telling rare disease stories – only give us enough medical details for us to understand what’s at stake in your story. That cuts down on the amount of mental work we’re asking our audience to do learning new facts and vocabulary, and keeps the focus on your relatable experience. And it also ensures that whatever medical information you do include is digestible and memorable.

3.      SHOW us

Audiences like to infer things – they trust their own deductions more than information that is fed to them. That’s why it’s more trustworthy, and more interesting, when Amanda Gorman describes her twin as the type of person who “learned how to do a backflip on her first try on accident, on cement,” rather than just saying, “My sister always does everything perfectly.”

Early on in your story, you’ll want to establish what your dreams and goals, your relationships, or your everyday routine and comfort mean to you, so that we understand what’s at stake for you in this story. When you do, be sure to show us what they mean to you, rather than telling us. (When you get to those moments of change in your story – those cow-on-fence moments—you’ll want to show rather than tell there too, so we can see the change play out. More on this here.)

Some examples from other Story Collider stories:

Dreams, Passions, and Goals

This is how cancer survivor Dr. Barbara Abernathy begins her story:

Five years ago I was standing on the jetty in Florida looking out at the Atlantic Ocean and just drinking in its beauty, because that was the moment that I had to say good-bye to the ocean to go have a bone marrow transplant.  The transplant doctor had told me that, for a year, I wouldn’t be able to get into the water…  It would be risky… with a compromised immune system…

I’m a scuba instructor.  I love the water.  I've grown up around the water.  The water is just such an essential part of me, of who I am.  It’s my happy place.  It’s my joyful place.  We all have that safe, joyful place that we go to and it just represents who we are. 

So that day I got in the water and I just was like, “Okay, let me just hold on to every memory of how this feels, the water against my skin holding me up, just the warmth of the sun,” just that moment drinking it in. 

What Barbara does here is so efficient. In one vivid opening scene, she introduces us to the dramatic question and shows us what’s at stake for her in this story through a powerful visual.

Barbara Abernathy sharing her story last year.

Barbara Abernathy sharing her story last year.

And the visual here is important. There’s a concept in neuroscience called “transportation.” When psychologist Dr. Melanie Green spoke to the Story Collider Ocean Fellows last spring, she explained it like this: “Being transported is basically the state of being so immersed in a narrative that it becomes your whole mental world. One of the examples that I always give is if you're reading this really great book and you're totally immersed in it. And then maybe somebody walks into the room and you don't even realize they're there until they're right next to you, and you jump out of your chair. It's because your mind really was in this other place that was taking up all of your cognitive capacities.” Of course, this is the state everyone wants their audience to be in! One of the things that can help them enter it is vivid mental imagery—or, as Dr. Green described it, “little details that help people really imagine the kind of scenes that they're seeing.”

And if you have a persuasive goal, you may be interested in research by Harvard psychologists Dr. Joshua Greene and Dr. Elinor Amit, which I recently read about in the book Compelling People, by John Neffinger and Matthew Kohut, who wrote “stories with mental pictures are more likely to trigger emotional responses than stories without them, which tend to trigger rational responses like cost-benefit thinking.”

Relationships

From Dr. Toria Stafford, in her story about obsessive-compulsive disorder:

My partner Conrad, when he came over, had a little square on the floor where he was allowed to put his bag.  And he had a separate set of towels just for him because I couldn’t know where he put the towels down in the bathroom and that might be the wrong place, so they were dirty and contaminated. 

Every time after he left, I would scrub the floor where he had left his bag.  I would change all of the bed sheets and I would rearrange the whole room to exactly how it was before he came.  I'd basically remove every trace of him not because I didn’t want him there, not because I didn’t love him, but just because that’s what my compulsions told me I had to do to be content. 

Toria’s story is a great example of the fact that one vivid detail is often all you need to illustrate what something or someone means to you. In Toria’s story, for example, Conrad’s bag stands in for the bigger picture of their relationship. It gives us a specific, tangible detail that allows us to understand the situation without further explanation. And just one or two examples will stand out more, and be more memorable, than a long list of descriptors or evidence.

Everyday Life

From Dr. Tracy Dixon Salazar’s story about her daughter, who has Lennox-Gastaut Syndrome:

During all this time, we became prisoners in our own home, on purpose, because it was just easier. We spent all our time trying to keep this kid safe, trying to keep a young kid who’s active and mobile and perfectly typical who was having seizures all the time from not running around. If there was a brick fireplace within a five-mile radius, her face would find it.

This simple detail shows us how Tracy and her family’s quality of life has changed as a result of her daughter’s seizures. We can imagine what it would be like to live in this isolation and fear, and we understand what’s at stake.

4. Be yourself, and be true to your story

When you have a rare disease or chronic illness, there are often a lot of people who want to tell you how you should feel about it, for one reason or another. You might feel pressure to be the “ideal patient” or to be “inspirational,” for example, or to follow some prescribed narrative that positions you as a victim, or a survivor, or an angelic caregiver.  Tell your story in a way that feels true to you. Not only will you feel better about it, but your audience will be able to pick up on your authenticity. Narratives that feel formulaic or impersonal are usually tuned out.

Also: Don’t be afraid to be funny. While it’s a bad idea to use jokes to distance yourself from the emotion of your story, or to use gallows humor that will rub your audience the wrong way, it’s good to acknowledge moments of levity or joy in your story, especially when you’re showing your audience who you are and what your relationships mean to you. Immunologist Dr. Sheena Cruikshank does this very well in her story about her brother’s cancer, which begins, “One of the funniest things I ever saw was my teenage brother Ian trying to catch a flatfish with his bare hands.”

[For especially funny stories about illness, check out these stories by Phillip Comella (ulcerative colitis), Nick Andersen (diabetes), Joey Slamon (pilonidal cyst), and Jacey Powers (cancer).]

By the same token, it’s OK if your story is dark or complicated. Don’t feel pressure to wrap your story up neatly in a bow at the end. Life is complicated – in the real world, all of our problems aren’t solved by the end of the episode. But that’s OK – your audience will appreciate the honesty.

5. Ask yourself: Are you ready?

The answer to this question is different for everyone. Some folks don’t want to share these stories until they have resolution in every sense. For me, it was healing to tell my story during the time when I was still sick. But it was important that I had come to terms with being sick. And I think the story has improved as I’ve been able to put it into context in my life. In the first two years of my illness, I don’t think I’d be able to tell the story well. Dr. Ali Mattu, a psychologist on Story Collider’s board, advises us to share stories about “scars” rather than “wounds.”

But then there are folks like Tig Notaro (or Susan Kent, who I saw recently here in New York) who can tell a story fresh off a diagnosis that captures the audience’s attention with its rawness and intensity. So only you can be the judge of whether or not you’re ready.

Upcoming Shows in September: Story Collider & RISK!

Upcoming Shows in September: Story Collider & RISK!