Patient Advocate and #justB Storyteller, Hepatitis B Foundation
Every morning, I devote around 30 minutes to reading articles about the COVID-19 pandemic. Just enough to stay informed and not enough to make me overly stressed. I try to fill the rest of my day with rollerblading (my favorite form of exercise), cooking, catching up on video games, working my direct care job, spending time with my girlfriend, and practicing self-care.
Love and gratitude for my family and loved ones has helped me through moments of uncertainty and despair.
Some of the COVID-19 articles include people’s fear and uncertainty about infecting their loved ones. After reading them, I found myself replaying thoughts and feelings I’ve had throughout my life about infecting another person with hepatitis B. If I were to make a word bubble regarding this, the most commonly used words would be “fear,” “shame,” “guilt,” “disconnectedness,” and “uncertainty.”
When I was 13 years old, I remember my parents taking me to the clinic and hearing about this thing called “hepatitis B” for the first time. I was in middle school, thinking about dating and playing sports, not about having a chronic illness.
The doctor said, “You can live a long, healthy life.” But nobody helped me talk about the things that mattered to me. Am I going to be able to date? Am I going to have a family? Will I be able to be physically active? Will I be able to keep striving for my goals?
I remember feeling like I’d gotten some answers, but also feeling completely overwhelmed knowing I had a chronic infectious disease.
Throughout my 20s, I alternated between not caring, being worried, and wanting to ignore it. I didn’t go to the doctor as often as I should have. That was until November of last year, when I found out my liver wasn’t doing well.
My AST/ALT (liver enzyme) levels were alarmingly high. The doctor suggested a liver biopsy and I eventually agreed to the procedure. It went well, and I’ve been taking medication to control my hepatitis B for almost a year now.
My viral load is undetectable and I feel no side effects from the medication. Being proactive with my health and being 100 percent honest with my doctors about my lifestyle choices is a habit I’m going to keep for the rest of my life.
My memory from years ago is blurry and unreliable. However, I can clearly remember a strong fear of spreading hepatitis B throughout most of my teenage years and early 20s. Even after talking with liver doctors and reading countless online articles, I still felt like I needed to quarantine myself away from others sometimes.
During the first few years of knowing I had hepatitis B, If I fell down and started bleeding, I didn’t know what to do. Moments like those made me feel like I was a bad person just for existing. Knowing what I know now, I wish I would have spoken out more about my feelings and worries.
The chance of transmitting hepatitis B to another person through blood is very low if proper precautions are taken, and there is a very effective vaccine that can protect people from getting infected. Just knowing my hepatitis B status empowers me in this regard.
This pandemic is many things to me. Terrible, heartbreaking, and scary to name a few. But it’s also an opportunity for consistent empathy for my past health choices. Instead of thinking negatively about hepatitis B and how my life relates to it, I think of all the recent choices I’ve made to better my health, and that makes me happy. Most importantly, I remember that I’m not alone.