The Art and Challenge of Storytelling: How Chronic Patients Share the Messy Truth

The Art and Challenge of Storytelling

As the final day of Arthritis Awareness comes to an end, I thought I would take a moment, ok maybe several, and talk about the art of storytelling.

We tell stories constantly. At doctor’s appointments, to explain what we’re feeling. To family and friends, to share what’s going on. Simply put, our patient stories inspire, educate, and build community, even when all we really want is to feel a little better than we did yesterday. Even when we’re just trying to get through the day, storytelling is our constant companion.

Due to the importance of storytelling, there are countless blogs, books, and podcasts dedicated to help patients develop their own story. As an advocate who has read and studied a lot of these resources, I can tell you most of these resources follow a very basic template or formalized process. Most follow a familiar formula: introduce yourself, share a medical résumé, recount a defining episode in chronological order, and end with a life lesson. Then you repeat.

I don’t hate this structure. It works, and that’s why it’s so common. But here’s my issue: it leaves out a crucial part of the chronic illness experience. Being a patient (especially a chronic patient) is a dirty, grizzly adventure. It’s full of contradictions, setbacks, and small wins. It’s not something that fits neatly into a template. So why are we forcing our stories into one?

If I do my job right, you’ll come away with ideas for how to share your story in a way that’s both authentic and helpful: to your community, your healthcare team, and most importantly, yourself.

If nothing else, hopefully this post will serve as a reminder that raising our quality of life is the reason we got out of bed this morning, any likes or shares we receive from others sharing our story is a bonus but not our primary purpose in this chronic life.

Before I forgot, the following bullet points are in no order and are of equal importance. Good storytelling, regardless of subject, are a mixture of multiple techniques or templates. Much like there is no formal template for life, there is no formal template for a good story. My favorite author Kurt Vonnegut proves this in all his amazing books.

Your Voice Is The Only Voice That Matters

With the rise of social media, the pressure to “stand out” has never been greater. Thousands of powerful patient stories are buried under algorithmic noise every day because of this pressure. As we all know, a well-placed boob will get more likes than a deeply personal essay about surviving a medical crisis.

Adding to this toxic culture are CEO’s of certain platforms who reward outrage and cruelty. It’s not unusual for patient advocates who post about their pain or loneliness to be met with mockery or trolling instead of support. Gone are the days of patient advocates sharing the true depths of their vulnerability which made for some truly authentic patient stories.

So, what’s the antidote?

Authenticity.

Hate may generate clicks, but authenticity builds connection. People crave realness. And realness comes from your voice—your tone, your anger, your joy, your sarcasm, your grief. That’s what sets your story apart from the sea of sameness. You don’t have to be polished. You just have to be real.

Understanding Time as a Sick Person

Most people think of time as straightforward: minutes, hours, days. Chronic illness teaches you otherwise.

When I first entered the world of chronic patientness (yes, I’m inviting a new term here), learning time from a sick perspective was harder than I had anticipated. For example, it is easy to think of pain in terms of yes or no. Pain is experienced in the now but the reason for it comes from a different time.

Chronic pain develops from various time periods. For example, as an active patient with rheumatoid arthritis the pain in my knees could come from working out to hard the night before while at the gym, could be from a flare which has been active for the past month, or the pain could be indictive of a new medical issue which hasn’t fully materialized yet but will affect my future. In my example, determining what time the pain is based on will be the foundation for what treatment I decide to utilize.

In many ways, our treatment plans depend on our ability to communicate the timing of our symptoms. That’s why storytelling isn’t just emotional—it’s practical. It helps us and our care teams make better decisions. Without this understanding, my journey into the world a chronic patientness would have more difficult than it was.

Artificial Intelligence (AI) Is Just A Tool, Not a Requirement

The world has gone tech crazy. Let’s face facts, even blog posts like this are now obsolete thanks to platforms like TikTok. As much as we might want to resist using new tech because we are sick, the tech craze is only going to get worse and will leave us behind. Like it or not, this is the new normal, especially in a culture where capitalism reigns free.

Still, when we understand our story—our values, our needs, our goals—it becomes easier to integrate tools like AI into our lives on our terms. We can decide what tech helps and what doesn’t. That’s the beauty of knowing your story well: it becomes a guide for what tools are worth learning and which ones to skip.

With all the hype around new tech like AI, it’s easy to believe our patient story isn’t complete without the utilization of this new “it” tool. Nothing could be further from the truth. In the end, AI is no different from a belt or hammer, it is nothing more than a tool and not a requirement. The bottom line is you don’t need AI to have a valid story. But if you know your story, AI might help you tell it in new ways.

Redefining Patient Advocacy: It’s Not Just About Leadership

The phrase “patient advocate” often conjures images of someone leading a nonprofit, heading a movement, or running for office. But that’s not the only version.

Being a patient advocate is simply sharing your lived story as a fellow expert in healthcare, but not the only expert. Doctors, nurses, physical therapists, and pharmacists are experts too. Whether it’s seeking validation from medical professionals, or a misunderstanding of what patient centered care means, being a patient advocate does not mean it’s my way or the highway. Co-collaboration with our medical team is a positive, dictating to our doctors is a negative. Patient advocacy is a two-way street.

Yes, bring your research and ideas to your doctor visit. Speak up for yourself. Just keep in mind that you might not need opioids for your pain. Yes, our patient story is what gives life to a medical professional’s textbook but that doesn’t mean we understand the textbook. Understanding where our patient story currently resides within this constantly changing paradox makes us stronger, more engaged patients.

Conclusion: Storytelling is Never Finished

Your patient story is never truly done. That is not a flaw, it’s a feature of being a patient. As I mentioned before, this is the product of having a dirty, grizzly healthcare system.

Every new treatment, flare-up, breakthrough, fun adventure, workout, or failure adds another chapter to your patient story. Every “good” and “bad” day offers information that could help tomorrow go better. The only true failure in healthcare is having nothing left to try.

Your story doesn’t need to be tidy. It doesn’t need to follow a structure. It does need to be told over and over in your voice, in different ways, with different tools and styles.

At the heart of healthcare isn’t just data or protocol. It’s us. Without our stories there would be no life to medicine. The more honest, messy, and fully lived our stories are, the more human the system becomes. After all, it’s somewhere in the complexity of life that our lived patient story and our medical team’s knowledge combine to add a greater quality of life to our ongoing patient story.