Fighting Stigma with Education: My Hepatitis C Story
I knew about HIV and AIDS, of course. Growing up we had more than one educator come to a school assembly or our classroom to scare us into HIV prevention. Yet, never a mention of hepatitis C.
The diagnosing doctor told me "it's a liver disease, you probably got it from shooting up." I was rushed out of the doctors office quickly after to make way for the next patient. I left with no more education about the disease I had then when I came in. And I was devastated. This marked my first experience with hepatitis C stigma.
I had to learn for myself
My experience with my diagnosing physician told me that if I wanted education about my disease, that I was going to have to get it myself. For a teenager, that can be rather tricky, but I tried to learn anything I could to help myself overcome the disease. At the time of my diagnosis there was no direct-acting antiviral treatment and the prospect of enduring the side effects of interferon did not sound agreeable. So I waited and focused on managing my other issues, including the addiction that was the catalyst for my hepatitis C diagnosis in the first place.
Fast forward to 2017, the year of my treatment. I had been referred by my family physician to a doctor to treat my hepatitis C. When the process of "one pill a day for twelve weeks" was explained to me I was elated! What a drastic change to the previous treatment options! As soon as I had financial coverage from the government I started my treatment with Epclusa, and for me it was as easy as taking a sugar pill. No side effects and within 6 weeks I cleared the virus. How wonderful modern science is.
Now I pay it forward as a health navigator
After my treatment hepatitis C left my mind again until 2018 when I was offered a position as a BBI (blood borne infection) health navigator with a non-profit in my city. I felt that as a person who has lived through a positive diagnosis I could best help those who were where I had been.
My work as a peer, educator and healthcare worker in the field of hepatitis C has brightened my life in more ways than I can articulate. I believe education is the key to everything, as the old adage says, "knowledge is power!" There are so many misconceptions and so much misinformation around hepatitis C, myself and my team have been slowly whittling away at the pervasive stigma and providing accurate, quality education. I have had the privilege of watching people clear the virus and reclaim their health. There are hard moments, to be sure, but at the end of the day I am grateful that my experience living with hepatitis C has facilitated so much opportunity for me and has allowed me to give back to my community in a meaningful way.
Do you experience long-term side effects from hep C treatment?