The Emotional Impact of Living with IBD

When I first began experiencing symptoms of Crohn’s disease, I went into survival mode. Anything else took too much of my time, my energy, my hope, my life – and I needed every ounce of everything I had to stay focused in the fight. As a patient advocate, I now know this is extremely common for both IBD and chronic illness patients across the board, but recognizing it and dealing with the aftermath can be much harder and take much longer than one may think.

Looking back today, it's clear to me that I lived in survival mode for almost a decade. 

Always in survival mode with Crohn's

Throughout my once hopeless diagnostic process, followed by finding the right medication, at the right dose and frequency to put my disease in remission, I lived in a space of day to day, week to week, month to month. Plans were always made with the chance (likelihood) of being changed or canceled. Thoughts were always put together with the idea that they could be impacted by anything at any moment.

Eventually, things settled down. To the point where I realized I was in a space where I could begin processing things – the feelings, emotions, decisions, and traumas I'd experienced during the time that I lived in survival mode. I noticed that they had stacked up, in a way hardening my outside and increasing my vulnerability on the inside. I realized that while I’d felt each shock, each day of grief, of fear, of loss during my sickest years, I just kept moving through life because I didn’t have the energy, the skills, or the ability to stop and really process anything.

A filter: that's how I functioned in the interim. 

Filtering my emotions as a Crohn's coping mechanism

In retrospect, it feels like I lived by filing my disease-related emotions away, using a filter to determine what was necessary for me to feel or think about in order to continue putting one foot in front of the other, day after day.

Functioning was essential, and to do that I had to shelve all of the real thoughts and feelings that existed in my subconscious. I didn't have the time or the space to walk through the stages of grieving, to feel the losses of my previous life, to process what the physical pain and mental agony of IBD had done to change my life, and how my life became so different than I'd imagined as a result.

Finally, I started writing. What began as essentially word vomit because carefully worded pieces of prose, stories, and advice to others, many of those now published as articles right here on InflammatoryBowelDisease.net. Walking through the ways that IBD has affected my life, my body, my heart and my soul made me recognize both how alone I felt in those moments, and how desperately I want nobody else to have to feel that same way.

That filter, that filing system, it's not just how I kept going, it's how I have learned to face grief and trauma and loss in every aspect of my life. IBD has changed how I process everything, including the hardest moments of life, and in some ways, I feel grateful for this coping mechanism.