When I meet someone, I don’t immediately talk to them about the fact that I had hepatitis C. I tend to only discuss it if I’m wearing my shirt that says, “My preexisting condition is hepatitis C.”
I wear this shirt often because I find that people are typically silent about this silent disease. Wearing this shirt creates the right conditions to explain how common hep C is and enables me to bring awareness to it.
There are many things people don’t understand when I talk about my hep C diagnosis, and it changes depending on who I’m talking to.
Here’s what I tell people to debunk myths and reduce stigma around hepatitis C.
The medical community is by far the most knowledgeable about hep C. But I’ve found that knowledge is mainly high among specialists.
The stigma of hep C often follows a patient throughout the medical field, from clinic to hospital. I often find myself reminding primary care physicians that hepatitis C isn’t just a liver disease. It’s systemic and has many symptoms that affect other parts of the body other than the liver.
I’m almost always greeted with shock when I explain that I not only know how I got hep C, but that I received it at birth from my mom. Vertical transmission is rare, but many assume I contracted hep C through drug use.
It’s far more likely that gaps in surveillance and screening helped the spread of hepatitis C before 1992 rather than drug use. My mom, for example, was exposed to the virus at work as a dental surgical assistant in the early ’80s, before hepatitis C even had its own name.
Stigma around hepatitis C persists in the public. More than 3 million people in the United States likely have hep C. But silence surrounds hepatitis C in both diagnosis and conversation.
Hepatitis C can lie dormant and cause no noticeable signs or symptoms, or symptoms can manifest with sudden urgency. In my case, my symptoms came on suddenly, but 4 years and five treatments later, I developed end stage liver disease.
Hepatitis C is a wildly inconsistent condition that’s always best served with early detection and elimination through treatment. The good thing is that there are now dozens of treatments available that can help people reach a cure in as little as 8 weeks with minimal side effects.
Explaining hepatitis C to someone can be complicated. Talking with someone you’re dating, interested in, or getting serious with can be more stressful than a doctor’s visit. It can feel like you’re revealing a deadly secret.
For myself and others diagnosed before 2013 when the first new treatments became the norm, there was no cure at diagnosis. We were given a death sentence, with an option to try a yearlong endurance treatment with a 30 percent chance of success.
Thankfully, there are cures now. But the fear of this past lingers in the community.
Without an early diagnosis and proper treatment, hep C can lead to many health problems, including death. Hepatitis C is the
When engaging in personal conversations about hepatitis C, it’s important to talk about experiences and use common flashpoints to make sense of it.
For example, on Election Day 2016, I was in a hospital bed trying desperately to vote from the hospital while recovering from sepsis. Talking about my experiences like this makes them easier to understand and relate to.
Sexual transmission of hep C may be possible, but it’s pretty
But the general public’s knowledge about hep C is that it’s a sexually transmitted infection (STI). This is in part because it’s often paired with HIV and other STIs due to the similar groups they affect.
Many people, especially baby boomers, also know about hep C because of Pamela Anderson. And some believe she got it through sex, furthering the stigma. But the truth is that she contracted the virus through an unsterile tattoo needle.
Baby boomers have a higher likelihood of knowing about hep C. Millennials and Gen Z, on the other hand, have a lower likelihood of knowing about hep C or treatment, but also are less likely to know they have it.
The last thing, and probably the hardest to explain, is the lingering symptoms that many people with hepatitis C experience.
Despite the fact that I’ve been cured of hep C, I still experience arthritis and really bad acid reflux at age 34. My skin and teeth have also suffered from my old treatments.
Hep C is a different experience for each person. Sometimes disbelief from peers can be the most frustrating side effect of all.
Having hep C doesn’t make you anything. But getting cured of hep C makes you a dragon slayer.
Rick Jay Nash is a patient and HCV advocate who writes for HepatitisC.net and HepMag. He contracted hepatitis C in utero and was diagnosed at age 12. Both he and his mother are now cured. Rick is also an active speaker and volunteer with CalHep, Lifesharing, and the American Liver Foundation. Follow him on Twitter, Instagram, and Facebook.