Why Telling Your Urticaria Story Matters
In an effort to assist healthcare professionals, narrative medicine may be the trick. Learn more about this approach and if it could work for you.
We all like reading a good story, whether it’s a bestselling novel or the latest news. But telling your story can be important as well. In fact, an entire approach to medicine is emerging that focuses on using your story of life with a chronic disease as a means to build understanding and ultimately provide better medical care.
It’s called narrative medicine,[i] a relatively new approach that allows patients to share their unique experiences in an effort to better understand what they are going through. Rather than filling out a questionnaire, patients are able to freely write about the issues that matter to them most. The aim is to give participants a voice, offer doctors a new perspective and ultimately encourage a greater understanding of what each specific patient needs.[ii]
Putting theory to practice
But can simply telling your story really make a difference? Researchers in Italy are trying to answer that question for people living with chronic spontaneous urticaria (CSU). A recent study looked at a total of 190 patients who were encouraged to document their experiences with CSU in writing. Their doctors (including immunologists, dermatologists and allergists), were also invited to give their accounts.[iii]
The completed narratives from patients and doctors – which were uploaded to an online platform anonymously[iv] – were then analyzed and common themes were identified. Altogether, the personal accounts helped researchers review current practices, and figure out ways in which both patients and doctors could be better supported.[v] Here are just a few of the lessons learned from the narrative medicine study:
CSU can be a real downer
Those living with CSU already know this to be true: CSU is no laughing matter. Of those surveyed, 85% described a reduced quality of life, with some of the narratives reflecting terms like “a true agony” or “terrible nightmare.”[vi] When discussing day-to-day items like carrying on relationships or social interactions, 86% expressed negative feelings including shame, pain and anger.[vii]
Diagnosis is tricky
If you thought the overall feelings of patients were bad, diagnosis is even tougher to swallow. Three-fourths of patients had visited more than three separate physicians before they finally received a diagnosis.[viii] Not to mention, for some of our community members, it takes longer. [update link post once new site launches]
And what about how patients feel after diagnosis? Turns out that 84% of patients experienced negative feelings even after communication of diagnosis, mostly due to lack of a clear cause and a cure.[ix]
The doctor–patient relationship is very important
Talking to your doctor [update link post once new site launches] is integral, but can be tough. That’s why it is no surprise that nearly all patients (92%) expressed frustration[x] when it came to their condition, and most felt their relationship with their doctor could be better.[xi] An important point, since patients who reported feeling listened to fared the best in terms of managing their condition.[xii]
Doctors get frustrated, too
Make no mistake about it: Doctors feel the hurt of chronic spontaneous urticaria. Half of the healthcare professionals who took part felt that more could be done to support patients, [xiii],[xiv] such as implementing a dedicated psychologist to improve matters.[xv] Some doctors (15%) simply wanted more time – in general - to listen to patients explain their issues.[xvi]
Stories are healing
The survey did, however, share some uplifting insights: Those who took part felt the experience was useful, and hoped the project would improve treatment of people with CSU. Mostly participants felt grateful for the opportunity to express themselves.[xvii]
So, to ask the question again: How does narrative medicine help people living with CSU? It provides a much-needed open forum for patients and healthcare professionals to figure out the strengths and weaknesses of disease management, thus creating a better understanding of what needs to be done.
Want to share your experience? Talk to your doctor to get this conversation started. CSU can be a deeply frustrating disease, but that’s all the more reason to speak up and share your story.