As a medical and health writer, I’ve learned that some of the most powerful health content doesn’t come from a study or a statistic—it comes from a story. Specifically, a patient story.
I’ve written many other patients’ stories, from initial interviews through to final edits. I’ve also recently written about my own experience living with coeliac disease.
In this guide, I’ll show how to write a patient story using my personal account as a reference point. The original article—Reflecting on Life (So Far) with Coeliac Disease—offers a clear and authentic example of how to communicate a lived health experience.
So, what exactly is a patient story—and why write one?
A patient story is a first-person or narrated account of what it’s like to live with a health condition. It typically covers symptoms, diagnosis, treatment and lifestyle changes—importantly, it captures how those experiences feel. It blends clinical details and facts, with emotion and anecdotes from everyday life. It can be written by the patient themselves, or crafted in collaboration with a writer or healthcare communicator.
Patient stories are used widely in healthcare communications: by pharmaceutical companies to highlight unmet needs or treatment impact; by charities to raise awareness or fundraise; by hospitals and clinics to support patient education or quality improvement; and by researchers to better understand the lived experience of conditions. Increasingly, they are also used to support and contextualise data for policy-makers, bringing a human voice to the numbers and reinforcing the urgency of change.
Crucially, patients themselves often say that storytelling is the most effective way to convey their needs. In advisory boards, interviews and surveys, they tell us: you’ll never understand the impact unless you hear what it’s like to live it.
That’s the power of a well-told patient story—it bridges the gap between knowledge and empathy.
Let’s break it down into ten components that can be applied to any patient story.
1. Start with a Clear Purpose
Every patient story needs a reason to exist. Why is this story being told? What does the patient want readers to take away?
“As a medical and health writer, I often help tell patient stories… But I’ve never told my story. So I decided to write it down.”
This line frames the motivation: a shift from helping others tell their stories to reflecting on one’s own. In any patient story, this kind of honesty and context helps orient the reader.
In practice: Introduce the patient, why they’re sharing their experience now and what they hope to achieve from doing so, whether it’s to raise awareness, reassure others or support advocacy efforts.
2. Offer a Simple Medical Overview
Many readers won’t be familiar with the medical condition involved. A short, clear explanation helps everyone follow the story.
“Coeliac disease: an autoimmune disease where the immune system… attacks the lining of your gut when you eat gluten.”
This definition is accessible and non-technical. It lets readers know what the patient is living with, without overwhelming them with detail.
In practice: Use plain language and avoid medical jargon. Describe the condition in one or two sentences, focusing on what it does and how it affects the person.
3. Describe the Symptom Journey
What did the patient experience before diagnosis? Symptoms are often misunderstood or minimised, so it’s important to include them in a way that feels real. This may also help someone recognise they too are experiencing such symptoms, prompting them to seek medical advice.
“Extreme (and I mean extreme) tiredness, depression, varied digestive symptoms, rash, mouth ulcers.”
This quote builds a picture of the patient’s life before diagnosis. The parenthetical note adds emphasis and voice.
In practice: Ask or describe what the early signs were, how they developed, and how they affected the patient’s daily life, mood and routines.
4. Detail the Road to Diagnosis
Many patients face long or difficult journeys to diagnosis. Including this shows the emotional and systemic realities of healthcare.
“They did a blood test – almost every possible marker came back as deficient… I was referred for a confirmatory blood test and a biopsy.”
This section highlights both the turning point and the seriousness of what was discovered.
In practice: Outline what steps were taken to reach a diagnosis. Include delays, misdiagnoses, breakthroughs, and feelings of relief and fear.
5. Explain the Treatment or Management Plan
Most conditions have a treatment plan, whether medical, surgical, complementary or dietary. Including this shows what ‘care’ looks like in practice.
“There’s no treatment for coeliac disease, other than lifelong avoidance of gluten.”
In this case, the absence of a treatment is the point—managing the condition becomes the burden. In other stories, this might include side effects, adherence challenges or emotional trade-offs.
In practice: Describe what treatment or management involves, how the patient felt about it, and how it affected their quality of life. If relevant, include side effects, access issues or lifestyle implications.
6. Show the Impact on Daily Life
A diagnosis can change everything, from eating to socialising to working. A strong patient story illustrates this vividly.
“Adjusting to life with coeliac disease at university was, to put it mildly, rough… I quickly became ‘that difficult one’ at mealtimes.”
This shows how a condition affects more than just health. It shapes a person’s identity, routines and relationships.
In practice: Include real-life scenarios: school, work, travel, family life. Show how the patient adapted (or didn’t) in each instance.
7. Explore the Emotional Burden
Illness doesn’t just affect the body. Patient stories are often even more powerful when they explore how it feels emotionally to live with a condition.
“I hated drawing attention to myself… I was constantly explaining myself.”
This expresses vulnerability and internal conflict, which can be a valuable tool to help readers understand the whole experience.
In practice: Include emotions like shame, fear, anger, isolation, and even humour or hope. Let the emotional truth of the story emerge naturally.
8. Highlight Support and Connection
Illness is rarely faced totally in isolation. A well-rounded patient story should reflect the relationships and support that made a difference, including the impact on caregivers.
“A friend of mine… promised that if I made an appointment to see the GP… he would help me tidy my room.”
It’s a small moment, but meaningful—someone showing care, not just telling it.
In practice: Include details about who supported the patient—family, friends, partners, clinicians—and what that support looked like. Also, include how living with the person affected those caregivers.
9. Include Practical Coping Strategies
Readers want to know what helps. A patient story that includes specific, lived-in coping strategies is especially useful.
“I’ve learned to plan ahead, to check menus in advance, to carry snacks. It’s a hassle—but it helps.”
Practical advice like this offers comfort to readers in similar situations.
In practice: Share what’s worked. Include routines, tools, tips, apps, therapies or even mindset shifts.
10. Reflect on What’s Changed
The story shouldn’t just end with a diagnosis. Patient stories are most impactful when they include reflection—what’s changed and what’s been learned. End the story with something to hold onto: a piece of encouragement, advice or solidarity.
“Now, I see coeliac disease not as a limitation, but as something that shaped who I am—and helped steer me into this career.”
This offers perspective without downplaying the difficulty.
In practice: Explore identity, purpose, resilience, or shifts in values. What does the patient understand now that they didn’t before? Consider who the story is for—other patients, carers, the public—and end with something that speaks to them.
Final Thoughts on How to Write A Patient Story
By being structured—organising the story with a clear purpose and context; sensitive—honouring the emotional and lived experience of the patient; and specific—using plain language, real-life details and the authentic patient voice—you can create a patient story that truly resonates with your audience.
Whether you’re writing your own story, supporting someone else to share theirs, or developing communications for a healthcare organisation, these elements help ensure the narrative is both meaningful and memorable.
To read the full story referenced in this post, visit: → Reflecting on Life (So Far) with Coeliac Disease
If you’re looking for support in developing authentic, high-quality patient stories—get in touch. It’s work I care deeply about, both professionally and personally.
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