“It’s easy to ignore symptoms when you’re busy.” Hannah believes she was suffering with the symptoms of EoE for some time but was so busy studying and holding down a job that she didn’t give it her full attention.
In the year leading up to her EoE diagnosis, Hannah began to experience increased pain in her chest. Thinking it was related to her GERD diagnosis and hernia, she treated it with her existing medication. However, by March of this year, the pain in her chest worsened and the medication was no longer helping.
A change of pace led to Hannah’s diagnosis
Amidst the COVID-19 pandemic, Hannah left her college apartment and moved back home to live with her parents. During this period of lockdown, she finally had the time to reflect and truly listen to her body… something wasn’t right.
During one episode, Hannah felt like she was having a heart attack and couldn’t swallow. Although her doctor attributed her symptoms to her reflux, she requested an endoscopy believing there was more to the pain.
Hannah’s diagnostic journey
When Hannah woke up from her endoscopy, her doctor explained why she had been experiencing this pain and discomfort - she had EoE. The doctor assured her she was “fine” and sent her home with new medication. Hannah didn’t utterly understand what her diagnosis meant until she visited her allergist two weeks later.
While waiting for her appointment, Hannah began researching the condition online and discovered that EoE is a rare and chronic illness. She had lots of concerns and questions, but unfortunately her gastroenterologist knew very little about the condition. Hannah felt unprepared for what lay ahead.
When Hannah first met with her allergist, she was both surprised by how seriously they took her condition and relieved to learn they were extremely knowledgeable in this field. Until this point Hannah did not realize how much of the disease was allergy based and how working closely with an allergist could really benefit her health and pain management. This appointment was a turning point for Hannah – it was the first time she understood the real impact EoE would have on her everyday life.
And when there is a severe lack of collaboration between her healthcare providers, Hannah remains disappointed and confused. She believes she would really benefit from having one specialist, or at least more coordinated, multidisciplinary care. She finds her gastroenterologist and allergist often have varying opinions on EoE and how to manage it, which can be confusing and frustrating.
Hannah constantly struggles with pain, a major symptom of EoE, and has yet to fully overcome the shock of her diagnosis. Allergic reactions to certain foods trigger EoE flares but discovering which foods trigger this through an elimination diet takes time. Hannah has found this process immensely frustrating and challenging. This is amplified by Hannah’s current stage in life where she is transitioning from both college life to the work environment and from home to living independently.
“This diagnosis has changed my relationship with food.” Hannah is much more anxious about eating out and as someone who once loved to cook, she now finds it difficult to still be excited about food.
Another important issue for Hannah is cost burden. “Free-from foods are at a premium price and the expense of eliminating foods and buying free-from versions in supermarkets or restaurants is a big problem.”
Free From foods is a term used to describe foods that exclude common allergens such as wheat/gluten, dairy, nuts etc.
Even further, Hannah struggles with her mental health; she was previously diagnosed with anxiety and depression. Hannah was left feeling scared and sad by her diagnosis.
“My EoE diagnosis was the tip of the iceberg. It felt like the end of life as I knew it. I had to leave college as a senior; I didn't get to graduate on the stage. I was struggling to find a job and then I had this diagnosis of a rare illness, so it's definitely been tough mentally… not being able to eat some of my favorite foods and being anxious about going to restaurants and people not fully understanding. It's tough.”
Learning to Cope
As a personal outlet and coping mechanism, Hannah created an Instagram account @hanishangry where she shares her EoE journey. Using the hashtag #EoE, Hannah found a community of women her age who provided her with incredible support and advice.
“I can’t speak highly enough of the EoE community. Once I started to read first-hand accounts it really made me realize I can do this.”
By finding a strong and supportive community who share similar journeys, Hannah now understands what it means to live with EoE.
Hannah also has great support from her immediate family who have educated themselves on EoE. Hannah loves to raise awareness and believes that education is vital not only for patients but for the healthcare industry and society. Through education, Hannah hopes that restaurants and other eating establishments can learn how to better support people with EoE and other food allergies. She wants them to fully appreciate the seriousness of the disease and the dangers of cross-contamination in order to make dining out a safer and less stressful experience.
Looking to the Future
Hannah is at the start of her journey with EoE and is still learning to find her new normal. She has been surprised by the complexities of the disease but has worked hard to become educated in all things EoE.
Hannah is a passionate advocate for EoE coordinated care and wants to see tighter regulations around allergy labelling in restaurants.
Hannah, who is inspiring a new community of people online through her honest and comedic approach to EoE awareness, has two pieces of advice for anyone at the start of their EoE diagnosis:
“Know your body and have the confidence to advocate for yourself when you feel something is wrong.”
“Stay strong—You will be OK. You are not alone.”