Mara's Journey Part 2
Updated: Sep 21, 2022
Self- Assessing My Resilience
Part 2: Completing the Resilience Assessment
Am I resilient?
If you ask me when I’m symptom-free, in remission, and just finished towing my camper a few hundred miles, setting up camp, and enjoying a relaxing trip all by myself, I’d say yes. But if you ask me when I’m in a flare, dealing with countless doctor’s appointments, all the while not really able to get off the couch, then I’d likely say no.
Resilience can occur on a spectrum - it’s not always black or white. However, what I’ve learned is that showing resilience in my triumphant moments with IBD means that I’m also able to lean on my resilience in some of the more trying moments.
The first part of officially starting my journey here at Trellus was by completing the resilience assessment. The Trellus team used my answers to start customizing my personalized resilience road map.
The resilience assessment started out by gathering my name, email, and diagnosis. I was then asked to rate my overall health, list the IBD-related symptoms that impact me the most, and note any IBD-related concerns I have.
A concern that resonated with me was whether I’d ever be able to get off the medications I’m on. While I’m thankful for all that biologics have given me in terms of disease remission, I am always wondering and oftentimes worrying if I will need them for the rest of my life. Thankfully, this is a concern that I have already begun to address with my resilience navigator.
The next part of the assessment gathered information about my disease severity and asked about my diagnosis, the treatments I have been on, and any hospitalizations or surgeries I’ve had.
There were moments while I was completing my resilience assessment when it became difficult to answer some of the questions. Even though I am 2 years into my Crohn’s disease journey and more stable than I was at diagnosis, it can still be jarring to recount parts of my journey that were exceptionally difficult. However, I took a break in the assessment when needed and then reminded myself that my answers would be discussed holistically and used to help me continue to grow in my IBD journey.
The self-efficacy assessment came next. I was asked to rank on a scale of 0 (not confident at all) to 10 (totally confident) my belief in my ability to do certain things related to my IBD.
The final section is the PROMIS assessment which asked about how my emotional health and well-being are impacted by my IBD. This section provides statements that asked me how often I feel or believe those statements to be true. This section loosely resembled some of the questionnaires I’ve filled out at doctor’s appointments before.
These last two sections, in particular, led me to think critically about my IBD journey. I answered these questions honestly, in a way that I am often hesitant to do when asked about my mental health during an appointment with my GI doctor. I have previously felt like my mental health concerns were an afterthought and that my answers, no matter how pertinent they felt to me, would not be taken into the context of my IBD care. If you’ve felt like that before, you are not alone, and you’ve come to the right place. The care team at Trellus not only values your story and your experiences but understands the impact things like stress, anxiety, and depression have on your overall health with IBD.
The final page of the assessment is where I was able to schedule my first telehealth visit with my resilience navigator. That visit is where I went over my assessment and began to discuss the personalized resilience road map that the Trellus team designed for me.
Stay tuned for the next post in this series, where I’ll talk about my first resilience navigator visit and what to expect during yours!
Mara Shapiro is a medical anthropologist, journalist and patient advocate. Her weekly article will focus on her IBD journey.