2023 started with a new brief. The next A Life in a Day experience I was going to create was eosinophilic oesophagitis.
What eosinophilic oesophagitis taught me about being patient obsessed
At the time, I was making final tweaks to the Ulcerative Colitis experience I’d been working on, a condition very close to my heart as someone who has lived with Crohn’s Disease for over 10 years. I was also receiving amazing feedback for the two oncology experiences I’d created earlier in the year. These experiences are having a huge impact on participants’ empathy for people living with these conditions. So, driven as I am by the patients I talk with to create them, I was excited to be moving on to the next.
But what on earth is eosinophilic oesophagitis, or EoE as it is often called?
I very quickly came to appreciate that my lack of awareness of the condition is not unusual. Not only amongst ordinary people like me, but also amongst many health care professionals and patients themselves.
The very first step in all A Life in a Day experiences is to begin our research by speaking to the people who live with, or who are impacted by a condition. While I was arranging to speak to patients, I also began my ‘desk’ research by looking for charities, patient support groups and case studies online.
I was astonished to find just a handful of sites available. This was vastly different to my experience of researching ulcerative colitis or breast cancer where information, advice and peer support seemed to be plentiful and available for anyone looking for it.
This was my first realisation: imagining being diagnosed with this condition and not being able to find trustworthy and patient friendly resources to help navigate through your new normal.
What I did find was helpful, but there just wasn’t a lot of it. Alongside learning how to actually pronounce eosinophilic oesophagitis, I learned that it’s a condition that causes too many white blood cells in the oesophagus, which causes inflammation and difficulties swallowing. I also learned EoE is a relatively newly discovered condition, that it is chronic – so there is no known cure, and it’s progressive – which means if left untreated, it will get worse. And I also discovered that while it is relatively easy to diagnose with biopsies taken during an endoscopy, patients often live with their symptoms for many years before receiving a diagnosis.
But, I’ll be honest, I wasn’t finding much in the way of information about the emotional impacts of EoE. It’s not life threatening, like the other conditions I’d written about, and I hadn’t read anything at all about the impact it has on social life, relationships and loved ones.
This was shaping up to be very different to any condition I’d researched before, and I really wasn’t sure how I was going to create an experience that took participants beyond the clinical aspects to tell the hidden story of EoE. That was until I spoke to the people living with EoE.
As I carried out my patient interviews, I was – as always – inspired by their stories. I was struck by their strength – quite often people live with EoE alongside other conditions – and their resilience – many people with EoE make instinctive adaptations to what and how they eat, which can have huge emotional and social impacts.
And finally, I was moved by their determination to raise awareness and understanding of eosinophilic conditions. Not just with other people and health care professionals, but for themselves too. They want to know everything new the experts are learning about this rare and little-known condition.
So, what has creating the A Life in a Day EoE experience taught me?
Well, I still believe I am an effective patient advocate, passionate about improving the lives of people living with long-term health conditions or diseases.
But I learned that, even though I am most definitely patient obsessed, I still have my own empathy weak spots. A learning that has motivated me even more to keep listening and learning from all patients and do what I can to help share their stories.
This coming National Eosinophil Awareness Week, please do as I did and take a moment to educate yourself and show support for people living with eosinophilic-associated diseases.