hepVoice Vol 34 March 2019 | Page 16

Wall of Stories “I want to share my story with others in the hope of showing those who are fighting viral hepatitis that they are not alone.” Together, our stories can change the way the world sees viral hepatitis. The stories of those living with or impacted by viral hepatitis can help educate and raise awareness, provide support and inspiration, tackle stigma and discrimination, and highlight the true impact of this global disease. Each month we share the story of someone whose life has been affected by viral hepatitis. This month, we hear from Mariam from Pakistan. years ago, I was “ Three diagnosed with hepatitis B during a regular pre- employment screening. I did not know anything about the disease. Being confronted with a chronic illness generally is crushing. Being diagnosed with an infectious chronic illness like hepatitis B can be beyond overwhelming. The fact that it is an infectious disease not only contributes towards stigma surrounding its diagnosis, but can also lead to an extreme sense of paranoia for the patient. Having an infection that I cannot get rid of makes me feel dirty, like I have to be cautious and aware that my blood is hazardous for others. There is a fine line between being cautious and being engulfed by a paralyzing sense of paranoia threatening to push you into isolation. I have learnt that the strongest weapon I can use in my defense against this 16 hep Voice MARCH 2019 paranoia is my sense of rationality and knowledge about the disease that shares my body. To fight it holistically, it is imperative that first you understand the nature of this disease in order to win the battle in your mind—only then will you be able to fight the battle within your body. Nearly 15 million people live with hepatitis B in my country Pakistan. There are many reasons why this disease, which is preventable and treatable, is prevalent in a developing country like mine. Pakistan lacks a proper healthcare system that can implement effective preventive methods. There are no pregnancy screenings or effective mechanisms to ensure babies are vaccinated against hepatitis B either. For three years, I hid away from my illness. I wanted to disassociate myself completely and so I tucked it away, in the farthest corner of my mind. I stopped going to follow-ups and did not share my story with friends or family. I did not know many people with whom I felt safe talking about it, whom I trusted to not see me through the lens of stigma. That was until one day when I was at a fundraising event for a charity cancer hospital and got the chance to sit with a doctor. He was a stranger and a doctor so I felt safe telling him why I’m so interested in trying to understand where my country stands in the fight against hepatitis B—I told him I was diagnosed with it. He made me realise that I need to go to my follow-ups before I can make a difference in combatting hepatitis B. The elimination of viral hepatitis by 2030 is one of the World Health Organization’s Sustainable Development Goals, but we cannot achieve this without dedicated efforts by all stakeholders including health-care professionals, patients, media, and policy- makers. Today, I want to share my story with others in the hope of showing those who are fighting viral hepatitis that they are not alone. Today, I am determined to play my role in defeating this disease. ” See more stories and submit your own at www.worldhepatitisalliance.org/wall-stories “For three years, I hid away from my illness.” hep Voice MARCH 2019 17