You may have seen some calls to “tell your story” as part of awareness campaigns, and you wanted to do it, but didn’t know where to start. I won’t tell you it’s easy (unless, like me, you’re a professional storyteller!). But it doesn’t have to be hard. It all boils down to somewhat inconsistent elements: focus and emotion.
Keep in mind that you don’t have just one story, you have an infinite number of them, and you’ll go crazy (and be ineffective) if you try to tell them all at once. Better to pick one or two pieces of your story and addressing them in depth.
The key to effective storytelling starts with knowing two things: 1) who your audience is, and 2) what your goal is.
First, define your audience. Are you telling your story primarily to other patients, to lawmakers, to researchers, to clinicians, or to some other group? Who is it you want to convince to take action?
The pieces of your story that you’ll share will be different, depending on the audience. For example, if your audience is other patients, you generally don’t need to talk too much about the things we all experience, like what bone pain and overwhelming fatigue feel like, because they’ve all experienced it. The only reason you’d mention those things is if you’re validating their experiences, confirming that they’re not alone. But if your audience is clinicians, the patient experience is exactly what you need to talk about, since that’s information they don’t know (or don’t know as much as they think they do).
The language you’ll use is different too, depending on the audience. If you’re talking to clinicians, you’ll want to use the precisely correct language. For example, to an endocrinologist, XLH is about phosphate reabsorption, rather than simply absorption. (Don’t ask me why it matters; that’s where I get lost in the biochemistry.) So if you’re talking to an endocrinologist, and you want them to accept that you know what you’re talking about, it helps to call it reabsorption. But for everyone else? Just calling XLH a disorder involving absorption of phosphorus (rather than reabsorption) is preferable, since it is more easily understood. Similarly, if you know your audience consists of non-scientists, then you should be prepared to explain medical terms, while you can skip over most of them if your audience is a clinician (although I always have to remind myself that most general clinicians don’t know what enthesopathy is, so I tend to use the more common term, calcification, with them).
Second, figure out the one message you want the audience to take home or the action you want the audience to take. Do you want them to remember the “whole body, whole life, whole family” description for XLH (which was our goal in writing the Patient Perspective article, and I hope you’ll incorporate it into your story too)? Do you want them to pass legislation (like the Ensuring Lasting Smiles Act) or to approve a new treatment (like when we told our story to the FDA to encourage the agency to approve burosumab) to to improve access to new treatments? Or perhaps you want the audience to donate to research, or enroll in research, or some other action.
Get that message/action clear in your head before you start gathering the thoughts for your story. It can be overwhelming to think about “telling your story” since it’s just such a broad subject, especially with a disorder like XLH that affects every single one of the body’s systems. If you try to talk about everything you’ve experienced (diagnosis delays, childhood surgery, bullying, bone issues, muscle dysfunction, fatigue, neurogenic symptoms, dental issues, hearing challenges, frequent medical appointments, and so on), your most important message will get lost in all the details.
When you’re asked to “tell your story,” don’t think of it as a whole book. Instead, think of it as a single chapter. It’s sort of the opposite of what we say is needed for treatment (whole body, whole life, whole family). Instead of trying to be comprehensive, you want to pick and choose aspects of your life to illustrate your message. So, for instance, if you have an anti-bullying message, perhaps you’d talk about what it was like to attend prom while using crutches in the aftermath of osteotomies. Or if you want the audience to support the ELSA legislation, you’d focus on your experiences with dental issues, like one story I heard from an adult about how, when he was a child (the only XLHer in a large family of moderate means), he’d develop a spontaneous abscess and the related infection, but he’d hold out, enduring the the pain, as long as he could without telling his parents about it, in the hope that it would go away on its own, because he knew that yet another root canal would be a major financial drain on the family’s resources. Or if your audience is clinicians, and your message is “listen to patients, even when it’s difficult,” then you’d share some examples of when you were not listened to, and how that made you feel, and how not being heard worsened the situation, along with some more upbeat examples of when you felt heard, and how the outcome was better.
You can sometimes use the same story for different messages and just need to know why you’re telling it so you can slant it a little differently. One message that needs to be told over and over again to health care providers is about how high XLHers’ pain tolerance is, and how we under-report it, so they need to believe us the first time we tell them we’re hurting. One story that I’ve found to be effective is the one about how I broke my arm and didn’t realize it for three months (not uncommon among XLHers, so it’s not just me), when it showed up on an x-ray done for other reasons. I frequently use that experience, along with stories about other XLHers who have broken weight-bearing bones and continued to walk on them, unaware of the fracture, to demonstrate our pain tolerance. But I can also use the same story to illustrate how doctors don’t always act in accordance with their claim to be committed to listening to patients. Generally, that story gets a shocked reaction and sympathy and a vow to be less skeptical, but on at least one occasion when I told that story, the doctor told me I couldn’t really have broken my arm, and it must have been some more minor damage. She was telling me, in essence, that I couldn’t possibly have experienced what I did, in fact, experience, since it didn’t match her expectations. And her response is now part of my story when talking about how patients are disbelieved.
Finally, if you’re telling your story to a journalist, there’s “one simple trick” (in clickbait parlance) for getting them to write about your message: think about how can you make the journalist’s work easier. If you essentially do their work for them, guiding them to the information you want them to have, they’ll be thrilled to interview you!
For a journalist to write an interview-style article, they need two things: some basic information about a topic, plus an “angle” or “spin” that gives readers a reason to read the article. You can make it easy for the journalist to get the facts about XLH right by providing a resource like this white paper: “Clinical Practice Recommendations For the Diagnosis and Management of X-linked Hypophosphatemia,” which has solid basic information about XLH. Note that you probably do NOT want to provide information from a pharmaceutical company, since the reporter might consider it to be biased. And beware of Wikipedia and most of the U.S. governmental pages about rare disorders, since, at least the last time I looked, the information on XLH was woefully out of date.
If your message is about one specific aspect of XLH, then you’d want to provide a more specialized resource. For example, if your story is about how your life changed with access to a new treatment or a different form of treatment like physical therapy, then providing the journalist with information on that treatment would be useful. Or if you’re talking about ELSA, you’d want to provide both a link to the proposed legislation and basic information about the dental issues of XLHers, like this flyer from the International XLH Alliance.
When it comes to helping the journalist find an angle for the story, a local paper (state or town/county) needs something that matters to local residents. Think about what would make you read a story about a rare disorder you’ve never heard of. Sometimes all you need is that you’re a local resident who has a rare disorder, and it’s rare disease month, or rare disorders are in the news generally for other reasons. Maybe it’s because your Senator or House representative just signed up to support ELSA, and you’re an example of someone who would be helped by that legislation. Maybe it’s because you just accomplished something great that’s unrelated to XLH, so the story is about how you can accomplish great things despite your chronic health issues.
I know I’ve given you a lot to digest — I’ve spent a lifetime studying storytelling and still don’t know all there is to know! — but I hope you’ll consider volunteering to tell your story the next time an opportunity arises. And if you want even more information about how to do it, Global Genes has a great resource about how to tell your story effectively. And if you ever need some one-on-one guidance for editing your story, just ask me: Gin at GinJones dot com
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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