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Mara's Journey

Updated: Sep 21, 2022

Becoming Resilient In My IBD Journey

Part 1: Finding Resilience Before Trellus

When my doctor sat at my bedside after the procedure and told me it was Crohn’s, I knew I’d be okay. I didn’t know anything about the journey ahead, but I knew I had a diagnosis, and at that moment, that was enough.

The months leading up to my Crohn’s diagnosis challenged my resiliency. The years of questionable abdominal pain, nausea, and diarrhea came into focus when I also developed iron deficiency anemia. I was sent to Mayo Clinic in Minnesota for testing in the fog of crippling and disorienting fatigue and worsening GI symptoms. Despite a family history of IBD and the diagnosis seeming obvious, it wasn’t until the second week-long trip to Mayo that summer that I got my diagnosis. My official diagnosis came after 2 weeks of grueling and traumatic medical procedures, having driven a total of 6,000 miles and exhausting every last bit of energy and hope I had.

The morning of my colonoscopy that would finally confirm I had Crohn’s, I looked at myself in the mirror and said, “This is it. This is the last medical test I will endure. This has to give me an answer.”

Despite this not being my first chronic medical diagnosis, I still felt like a newbie when it came to adjusting to life with an IBD diagnosis. Following my diagnosis, I felt relieved and thankful that finally, I had an answer and a treatment plan to follow. Quickly though, that relief and comfort in my diagnosis shifted to fear and anxiety.

Being newly diagnosed and fighting for medical stability to get out of the acute flare-up present at diagnosis is exceptionally challenging. Emotionally coping and accepting the new diagnosis may seem like it has to wait until the initial warning sirens calm down. However, working towards accepting the new diagnosis and finding positive coping skills early on will only help manage the physical symptoms.

Even just one self-care activity or act of intentional distraction makes a huge difference.

Maybe not every day, but at the end of the week, if I could say, “This was another challenging week with my symptoms, but at least I played with my dog at the park and finished a paint-by-number painting,” then I knew I was making progress.

With a disease like IBD, which often tries to strip away our sense of control and agency, being able to take back such control and agency, even if it’s through consciously choosing small activities to enjoy despite being sick, is very powerful.

While I can call myself a resilient person now, this was not always a word I used to describe myself. For me, resilience is not something easily recognized within yourself daily or even weekly. It is something I’ve seen in myself and my journey that is clear only when I look back at what I’ve overcome. It’s been easier to recognize my resilience when I’ve taken a bird’s eye view of my journey. My family, friends, and care team have also helped me realize my resilience.

Trellus has helped me tremendously to look back and reflect on my journey so far and see just how resilient I am. Similarly, Trellus has also helped me highlight areas of my life where I can grow that resilience even more.

Over the next few weeks, I’ll share my journey through Trellus by sharing more of my IBD story and experiences with the Trellus Elevate platform. Stay tuned!

Mara Shapiro is a medical anthropologist, journalist and patient advocate. Her weekly article will focus on her IBD journey.

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