By Varada Srivastava from India
I notice a common thread running through my life that began with some of my earliest memories
as I consider the road that led me to pursue patient advocacy. My advocacy work began in 2020
after COVID-19 struck, despite the fact that I was diagnosed with Crohn's disease at the age of 15 in
2015. Patient advocacy is something I was first introduced to thanks to the blog of Natalie
Hayden. She's a former news anchor and author of the blog, “Lights Camera Crohn’s”.
Starting a support group for people with chronic illnesses at my university was the first
project I worked on, and it was one of the most fulfilling experiences of my life. My
previously depressing and challenging diagnosis experiences suddenly had a new silver
lining. I was able to help others who had just received a diagnosis, just as I had hoped
someone would be able to help me.
While doing more research on the patient advocacy movement online, I came across
multiple organizations supporting and promoting it. One of those organizations was the Crohn’s and Colitis Young Adults Network. I decided to apply for the CCYAN fellowship and it was one of the best decisions I've ever made. After encountering several medical professionals and patient advocates during my time with this organization, I have come to the realization that patients frequently take
charge of healthcare movements - bringing crucial viewpoints to the frontline of the medical
profession. Working together benefits the industry as well as the patients. Motivated
patients are frequently passionate, outspoken, and organized in their pursuit of the medical
establishment's responses and the advancement of change. Social media has made it
feasible for many of these bigger conversations, and we need to pay attention.
On a personal level, I can now better manage my sickness and feel like I'm a member of a
community thanks to patient advocacy. Even if you've never met in person, you can find
solace in a friend who understands. Before it was offered to you, you might not have known
you needed it. I've come to terms with the fact that speaking up about my sickness and
seeking coping strategies is more beneficial than hiding it out of fear. Patient advocacy has
allowed me to work with excellent organizations and meet wonderful people. It has given
me a sense of purpose and helped me adopt a more optimistic perspective on my illness. I
intend to continue working toward it as long as I can.
Getting active in patient advocacy is possible in a variety of ways. There are several groups that
offer patients help and guidance as they begin their advocacy journey. Some of these include CCYAN, Generation Patinet, and many support groups across various social media platforms.
Featured photo by Prateek Katyal from Pexels.