We Are All In This Together: How The IBD Community Gave Me My Life Back

The first two years of having Ulcerative Colitis are a blur and lucid all at once. I am able to recollect everything that took place, every conversation I had, and the deep sadness I felt, but in part it feels like another lifetime. In those 21 months went on an expedition, first I scoured the internet for months on whatever IBD (Inflammatory Bowel Diseases) related information I could find, then I rebelled against my diagnosis to prove it would not change the life I once knew, and finally I succumbed to the reality of what life had dealt me.

Early that summer I felt I had lost the battle with my illness, I had lost so much weight and confidence. I had tried so many suggestions from loved ones and professionals from medications, to natural remedies, to diets, to herbal supplements, no medications or treatments were working. I had isolated myself to ensure nobody would see what I had become. I had never felt such sadness, it was different, it was a heavy emptiness that consumed my mind but paralyzed my actions. I felt hollowed out emotionally and physically.

I was angry, resentful, sad, and empty all at once. It was the most convoluted thing to try and describe to my therapist, that mid August day. Discussing it with her I felt ashamed for ever thinking those things. Despite getting great medical attention, my friends and family were extremely supportive, and I still felt groundless and alone. A conflicting range of emotions, I felt spoiled with my treatments and spite due to circumstances, I felt like an imposter in my illness however, I knew I was unwell, and loved yet isolated. Having seen my therapist periodically for years she understood me, the toll this illness was taking on my mental health was apparent, she could see the emotional weight I was carrying. I was advised to get it all out of my system, to make room for healing, her suggestion was that I journal everything to remove that weight until I could stand tall again.

I sat on her words for days, journalling did not feel cleansing to me. I needed there to be a full story, a visual representation I could look back on and recall a feeling, a time, a moment, a struggle, or a victory. I chose to create a social media account, one that was separate from my personal, a place where I could see my full storyboard and share the emotions and accounts without feeling like I was burdening anyone. As a spatial learner I would be able to reflect on the images and recall where I had been, and how far I had come. As I shared the first few posts I started getting likes, comments, direct messages, all exclaiming the relatability or the gratitude they felt for my candidly dark, yet positive posts. Which in turn led to the thing I cherished the most, hearing the stories of others. The fact that people chose to share those intimate details with me was something that connected us. It had never dawned on me that social media would be the way I would feel connected and grounded.

As a first generation immigrant in Canada our family values were ingrained in me, it was about working together to empower and create opportunities for each other, having a coterie that builds each other up. My life and career were dedicated to studying the importance of community, I acquired a degree in Urban Sociology and beyond that I built and designed physical communities for a living through urban planning, market research, and architectural design. I studied and implemented the concept of community engagement and the value of shared pride within a space. Although this was something that I practiced and studied since childhood, I never related community, engagement, and shared experience to the chronic illness world, because I had felt so alone the first 21 months. In my early years with UC my experience was not positive, like a moth to a flame I was pulled into an abyss of the darkest online searches, which directly fed the fears and insecurities I developed. All I was doing was packing on that proverbial weight that was holding me back. The communities in my lifetime were all about taking the weight and carrying it together, finding the power in vulnerability and understanding the power in numbers. That was exactly what this IBD community offered as well.

One of the most life altering and thought provoking things ever said to me on this voyage was “you are enough,” such a simple phrase yet so complex. Here I was having an epiphany, or an “aha moment” I felt empowered, I didn’t feel alone for the first time in years. There was an entire IBD community that existed, people who helped one another, who helped pick up the pieces that were too hard to reach, and that showed me a way to help myself and others along the way. This group had a strong sense of culture, accountability, and made sure nobody was left behind. Everyone was encouraging with their words, their stories, and their love. I was forcing myself to find positivity to break the barriers I had built, I needed to take what they had given me and pay it forward.

Within months of discovering this online sphere and shedding some of the debilitating weight, I was discovering my own voice and value within this worldwide community and taking power back from my illness. The succeeding years I was finding creative outlets to try and keep exercising the ponderous negative thoughts I had developed early on, while finding a wholesome new voice that was feeding my soul through the words, affirmations, and experiences of fellow warriors. I was connected to real people, real words, real organizations, and real resources. I had found a place for myself beyond my diagnosis.

To all my fellow IBD warriors, I want you to know you are enough, whatever you are able to do in a day is enough. Everyday will be different and some days you will be able to accomplish more and others you will achieve less, but what you manage in a day is exactly what you were meant to manage that given day. This journey is all about learning, be patient, be forgiving, and award the same kindness to yourself that you do to others.