Reflecting Back on the CCYAN Fellowship
By Varada Srivastava from India
Through my therapist, I learned about the IBD patient advocate Natalie Hayden's blog. I stumbled upon an interview she had conducted with Chronically Honest, who manages an art account devoted to inflammatory bowel disease. While going through her posts I noticed she had reposted a piece about a conference for Health advocacy on Instagram. I discovered CCYAN while browsing the Instagram of the Health Advocacy Summit (now known as Generation Patient).
I was still new to the health advocacy arena. My only experience was volunteering at ORDI (Organisation of Rare diseases India) and starting a support group for people with chronic illnesses at my university - which was one of the most rewarding experiences of my life. My previously sad and difficult diagnosis experiences acquired a new silver lining all of a sudden.
Many people are unable to comprehend the seriousness of the condition and how much it affects our daily lives. Fighting an unseen chronic illness can feel heartbreaking and isolating. The lack of knowledge about IBD made it extremely challenging to live and get diagnosed. It's essential to have a support system of individuals you can turn to when you don't have the energy to get out of bed. When you're struggling while watching from the sidelines, it's easy to feel alone, and when no one offers to help, you start to wonder if your suffering is even important.
One of the best decisions I've ever made was to apply for the Crohn’s and Colitis Young Adults Network fellowship. I've learned that patients frequently lead healthcare movements, bringing important opinions to the forefront of the medical profession thanks to the numerous medical professionals and patient advocates I came into contact with during my time with this organization. Both the industry and the patients gain from collaboration. Motivated patients regularly pursue the reactions of the medical system and the progress of change with a zeal, passion, and organization. Patient advocacy not only made me feel like I was a part of a community, but it also helped me accept my illness. I've discovered that it's more beneficial to speak up and let others know that I have an illness rather than being afraid to admit it.
I'm really grateful that I had the chance to interact with patient advocates from numerous countries and engage with professionals in various areas of healthcare from psychology to experts in biomedical devices. Thanks to the outstanding work of patient advocates at CCYAN people are becoming more aware of how complicated IBD really is. I consider myself fortunate to be a part of it. I will always keep the lessons I learned during this fellowship close to my heart and will always be thankful for the wonderful friends I made this past year.
Featured photo by Simon Berger from Pexels.