By Janine Kruse
Flower growing in crack of pavement. Feelings of Shame, Guilt, Failure associated with Crohn's disease and IBD symptoms.

When I was first diagnosed with Crohn’s disease in 1997, I really had no idea what Crohn’s even was. I’d never heard of it, and it wasn’t clear what this diagnosis meant for me and my life.

Social media didn’t exist when I received my diagnosis. The stigma that surrounded inflammatory bowel disease (IBD) in 1997 was drastically different from what it is today. It was a time when people didn’t talk about Crohn’s or ulcerative colitis.

Shame, failure and guilt—these were the emotions that came with my diagnosis of IBD in 1997. These were the emotions I would carry with me for a very long time.

Ashamed of a Condition I Couldn’t Talk About

Let’s face it: Crohn’s disease can be hard to talk about. Gas, bloating, diarrhea. People didn’t want to have those types of conversations—and many people still don’t. Those topics made people uncomfortable, and the 17-year-old Janine didn’t want to make anyone uncomfortable. Their discomfort made me uncomfortable. So, I didn’t talk about it. The thing that had recently come into my life and that so greatly impacted me on a daily basis, I couldn’t talk about, didn’t talk about. Shame was the message and so that’s what I carried with me.

Feeling Like a Failure Over Something I Didn’t Cause

Failure was another dominating feeling that came with my diagnosis. On a physical level, my body had failed me. It didn’t work the way it was supposed to. My body now caused me pain, embarrassment, and I felt as if I had zero control over any of it.

What had I done wrong?

There was no known cause, and therefore; I internalized the diagnosis to mean that I had to have done something wrong to cause this to happen.

Was it something I ate?

Was I genetically flawed?

No one else I knew had this, so it had to be me right? In my mind it was my fault, and so I carried with me a great sense of personal failure.

Guilty for Triggering Added Stress

Guilt ran rampant in my house. I now had to attend various medical appointments, take expensive medications, miss high school and later University. I missed many exams, delayed courses, extended student loans and missed numerous days at work that I desperately needed to supplement paying for my education.

I didn’t grow up wealthy, in fact quite the opposite. I was raised by a single mom who struggled with mental health issues and making ends meet. My mom felt guilty for not being able to provide a more “comfortable life” for me. I felt guilty that she felt guilty, and that I was now putting her through this added stress. It was a never-ending guilt cycle.

These emotions encompassed parts of my life for many years. They fluctuated between being in the forefront and living in the background, but they were always there.

The Start of Something Good

As time progressed, so did technology, and I began using social media frequently in 2014 to document my bodybuilding journey. Prior to 2014 I had never lifted a weight in my life. In fact, my lifestyle was quite the opposite of healthy. I used social media to motivate me to stay fit. Slowly, I integrated myself into the online fitness community. We supported and motivated one another, and would often connect at various bodybuilding competitions. My following grew slowly over the next four years as I connected with more new people.

Group of happy young adults sitting together outside a building, breaking stigma of Crohn's disease

Sharing My Whole Self—and Story—on Social Media

My social media accounts were strictly about fitness. I didn’t talk about Crohn’s disease, and only those who were really close to me knew I had been diagnosed.

On March 30, 2017, I made my first post about my Crohn’s diagnosis. Hitting the post button to make my story public (to what felt like the whole world) was oddly one of the scariest moments of my life. Although scary, I look back now and see how cathartic that moment really was. I had been hiding a part of my life for what at that time was just shy of two decades.

As I sat there, wondering what the heck I had just done; comments of support, kindness and even others talking about their experience with IBD began to come through. To date, that post was one of my “highest performing posts,” according to Instagram metrics.

The last two years have seen me slowly get to a place where I can share my story openly in hopes that it can help in some one in some way. I’ve now migrated from a strictly fitness account to @competingwithcrohns–which allows me to share my passion for bodybuilding, while still being a part of the IBD community.

Forging Ahead

I continue to work on being as vulnerable, open and authentic as I can, but on my terms and in my time. The online or social media community that has developed is an amazing community to be a part of and a great resource that I really wish would have been available when I was diagnosed.

So many of the IBD warriors I see online inspire me to reduce the stigma and advocate for awareness. It has been through them and the sharing of their stories that I’m able to share my story.

Janine kruse

Diagnosed with Crohn’s disease in 1997, author Janine Kruse credits staying active, eating well, and keeping a positive mindset as the most valuable tools in her ability to remain surgery- and medication-free. A nationally qualified fitness competitor in Canada, Janine has recently opened up about her personal journey with IBD on her blog, CompetingWithCrohns. Her degree in psychology and diploma in Holistic Nutrition add a unique perspective to her efforts to reduce stigma and raise awareness.

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