Last week, I talked about knowing the main message you want to convey when you tell your story.
Now, I want to ask you to include a specific message whenever you tell your story. It’s the “whole body, whole life, whole family” message. It doesn’t have to be the whole focus of your story the way it was in our patient perspective, but you can help the entire chronic hypophosphatemia community by repeating that triad whenever it fits into your story, using those exact words, in that exact order — whole body (since that is, chronologically, the first issue in a patient’s experience, when all the focus is on pediatric bones, not the other issues), whole life (chronologically, the patient’s next big issue, when work needs to happen for transition to adult treatment), and then, finally, whole family, which recognizes that the patient is, in fact, not the only person affected by the disorder.
Sometimes, we tell stories to pursue a specific goal for ourselves or a loved one. Other times, we tell stories for the cumulative effect, and that’s what I’m asking you to do now. Whenever you tell your story, see if you can fit in the whole body/life/family triad somehow.
It’s a bit like the end of Alice’s Restaurant, calling for people to engage in activism by singing the refrain of the song when they’re asked to do something they’re opposed to. One person doing it is going to be viewed as crazy (like the doctor who thought I was crazy when I said I had a broken arm and the pain wasn’t any worse than my everyday bone pain). But if someone hears it five or six times, it starts to mean something. And once it hits fifty repetitions, it starts to look like a movement. We need everyone in our community to join the whole-body, whole-life, whole-family movement!
So let’s all commit to the “whole” movement. Say it after me: XLH affects the whole body, whole life, and whole family. You don’t even have to sing it (although if you want, you could sing a bit of “XLH Strong” too)! Just say the words, over and over again, with every audience. And if the person you’re talking to wants to know more about how the whole body, whole life, and whole family are affected, then you can give them the link to our “Whole Body, Whole Life, Whole Family: Patients’ Perspectives on XLH.”
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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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