By Varada Srivastava from India.
“Patient advocacy has helped me feel a part of a community as well as cope with my illness.”
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”. A person who suffers from chronic illness has to constantly face challenges since the time of diagnosis, which is excruciating, to say the least. Overcoming challenges faced throughout our journey, from diagnosis to daily life, is something many of us experience. In fact, it seems like I would break down every time I read her blogs. I spent the entire day reading her blog and crying.
Many people don't realize the severe impact that chronic illness occupies in the lives of patients. How much chronic illness impacts our daily lives. Fighting an invisible illness is often isolating and heartbreaking. I discovered Natalie Hayden’s blog probably 5 years after my diagnosis and that was the first time I did not feel alone with my disease. I acknowledged the importance of patient advocacy when I realized that if I had this support when I was diagnosed, perhaps I would not have felt so lost until coming to terms with my illness.
India faces a lot of misdiagnoses because of health illiteracy, lack of medical facilities, and expensive medications. The feedback IBD patients may get is also typically insensitive.
Having a system of people who help you and encourage you during difficult times is crucial. It's easy to feel alone when you're struggling on the sidelines. And when people don't reach out, it can be difficult to stay optimistic. When it comes to Crohn's disease, it is often referred to as debilitating. And that it is. However, I’d also argue that what's really debilitating is constantly worrying about the unexpected.
It is common for Crohn's disease and ulcerative colitis patients to have what is known as "psychophysical vulnerability." 1 Stress, emotional distress, and inadequate coping skills can all have a negative impact on how the disease progresses and decreases quality of life. 1 There are always two types of reactions you receive from people. Friends who support us and people who give unwanted advice.
For several years following an initial diagnosis, the number of procedures and medications can be overwhelming. Determining trigger foods and finding medications that work, are also among the significant challenges. Having a network of individuals who have gone through the same process is helpful to a great extent. It has been an invaluable experience for me to connect with young adults from around the world who face similar challenges.
Patient advocacy has helped me feel a part of a community as well as cope with my illness. If you can find a friend who understands, even if you've never met in person, you can gain comfort. It may be something you didn't know you needed it until it was offered to you. I have accepted that rather than being afraid to reveal my disease, it is more helpful to be vocal about it and get advice on how to cope with it.
As a result of this, starting a support group at my university and applying for the Crohn’s and Colitis Young Adult Network fellowship has been two of the most rewarding personal experiences in my life. Being able to help others with things I have struggled with, is an incredible opportunity for me. I'm very grateful to patient advocates for this reason. The awareness of autoimmune disorders is constantly growing all over the world and I feel blessed to be a part of it.
Featured photo by Polina Kovaleva on Pexels.
Resource: (1) Bonaz BL, Bernstein CN. Brain-gut interactions in inflammatory bowel disease. Gastroenterology. 2013; 144(1):36-49.