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“I will always advocate for the safety and protection of us all” – Diya’s story
My journey with Crohn’s began before the actual diagnosis. In 2011, during year 5 school camp, I saw blood after day one, felt excruciating stomach pain and I just remember thinking this isn’t normal, but it’s got to be a one-off, right? It was brushed off for two years as I was ‘just a kid’ and IBD is for older people. Maybe I have anxiety or just an upset stomach … I even once got told it might be my period. Wrong end guys!!
We were on a family trip overseas in 2012/13 and I passed out in the bathroom from how weak my body suddenly became. Everything changed in April 2013 when I had the major flare-up. The pain was unbearable – screaming, crying, weak, unable to move, I could literally feel my body attacking itself. I was admitted to the hospital immediately and after a series of tests, I was finally diagnosed with Crohn’s disease in May 2013. At 12 years old, I had never heard of it. It was confusing, isolating and a difficult world to accept for myself and my family who supported me through my journey. I tried to stay as head strong as I could through the process as I knew this disease was forever, but there have been a lot of low moments of grief along the way.
The years between 2013 and 2024 were a rollercoaster of symptoms and treatments (medications, infusions, minor surgeries, medically approved diets, injections…the lot!). Through school, university and now trying to balance adult life, it was tough, but through trial and error I have been able to find habits that worked for me. These included exercise and journaling to stay positive. In times of remission, it lurked in the background, and other times it would disrupt my life plans with a flare-up. Autoimmune diseases remind us we cannot control everything. We simply work around whatever comes our way the best we can.
In high school, I never told anyone the name of my disease as I didn’t want pity. I was too embarrassed that people would see me differently if they knew. They saw me disappear to the hospital for weeks before returning to my school leadership roles, extra-curricular activities, studies, and social life without an explanation. If I could go back, I would change this part of my story; people cannot help or understand you if you don’t tell them what’s happening. Your voice matters! Everyone I have spoken to about my Crohn’s either extends their support or tells me how someone they know has the same illness and that they are so grateful that I shared my story with them.
Women with illnesses in relationships have the stats against them. Being with someone who didn’t just tolerate my disease but actively supported me through it showed me that love doesn’t have to be conditional. The good ones exist! I will always advocate for the safety and protection of us all, especially those of us with chronic illnesses.
I went into remission January 2024 after an extremely difficult and long flare-up that felt never-ending. It was probably one of my worst cases, but I am so happy to say I got through it and feel more hopeful about the future. I am on my last biologic treatment, but new treatments are always being researched and released which is why it was so important I join the CCA to keep up with the community aspect too. My journey with Crohn’s has taught me resilience, patience, the importance of seizing the day and surrounding myself with people who truly care. I know that the surgery may still happen down the road, but for now, I’m enjoying the relief that remission brings and am focused on living life to the fullest.
