For many people, finding a supportive community can help ease the burden of living with chronic illness. But what happens when your disease is so stigmatized that nobody talks about it? As a newly diagnosed Crohn’s disease patient, Daanya found solace in the online chronic illness community. Now, she is determined to help others and fight back against the stigma of inflammatory bowel disease. In her autoimmune story, Daanya opens up about the many ways that Crohn’s has impacted her life and her future plans.
Daanya's Story
Hey! I’m Daanya.
I’m a 19-year-old student from Malaysia, studying Medical Bioscience. I was diagnosed with Crohn’s disease in November 2020.
It all started with an unexplained fever that lasted for at least 3 months. I had blood tests, scans, and ultrasound, but nothing showed up. I started to lose hope because I was suffering every day with fever and fatigue, with no answer. As time went by, the abdominal pain came on. It got to a point where even a sip of water would leave me curled up in pain. Finally, I was able to see a gastroenterologist in a private hospital. They did an endoscopy & colonoscopy, which showed that there was an abscess in my colon and that my appendix was about to burst. I had emergency surgery and was then diagnosed with Crohn’s disease.
I was on Azathioprine and Mesalazine for about 11 months. In October 2021, I had a severe flare-up which led to an intestinal hemorrhage. I was in the hospital again, 2 weeks before my final exams. I have now switched to my very first biologic therapy, Vedolizumab (Entyvio), and I’m working my way to remission. We don’t know if Entyvio is working well as I still have bad days, but I’m so much better than before.
As an Asian with IBD, there are a few struggles that I go through daily. The awareness of IBD is extremely low here in Asia, and in Malaysia specifically. It’s either no one has heard about it, or they call it a “Western disease” because it’s rare in Asian culture. Every person I’ve come across has told me:
“How did you end up getting a disease that doesn’t run in your blood?”
Then they start blaming it on diet and western culture influence because they don’t medically understand the root cause of IBD.
Another reason why IBD is barely spoken about in Malaysia is that “bowel diseases” are taboo and should be kept private. It’s immediately labeled as “disgusting.”
I also struggled getting accommodations in school and college because I look healthy on the outside. When I mention “Crohn’s disease,” it doesn’t ring a bell to anyone. They assume it’s like IBS or acid reflux so nobody knows the seriousness of it. Having a rare disease in my country is so mentally exhausting because you can keep explaining yourself and yet no one will understand. You always feel alone in your battle.
I couldn’t bear the narrow-mindedness of the Asian society. I wanted to break the discrimination because no individual should suffer alone. So, I made an Instagram page to connect with people from my country and overseas who have Crohn’s disease. I want to find support and be the support to as many people as I can. I’m so blessed to find a chronic illness community because not only did it support me throughout my rough times, but it also made my whole journey with Crohn’s much more pleasant, despite being an Asian.
Crohn’s disease has sparked an interest in me to pursue healthcare, which is why I switched my major from accounting to medical bioscience. I want to contribute to healthcare and help people with similar conditions. I hope to continue to raise awareness about this debilitating disease.
It’s okay to have bad days and negative thoughts, but you should never let those thoughts get to you.
Keep fighting and pushing through. One major piece of advice I would give is to never stop advocating and fighting for your rights. If you are not getting the answers you’re looking for, get a second opinion. Never settle for less. It’s your body and your health, therefore you should own it.
The views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.
Interested in sharing your story of autoimmune disease or chronic illness? Head over to How to Tell Your Chronic Illness Story for prompts and tips!
