When people find out that I’m living with an invisible ailment, their reactions vary greatly.
Sometimes, that invisible ailment — hepatitis C — comes with a heavy cloud of judgment. This makes it easy to keep it hidden.
When I was diagnosed at age 12, it didn’t occur to me that others would judge me based on something that happened to me. But the harsh reality set in fast.
I contracted the virus at birth from my mother. The rest of my family was unaffected. My mom knew better and didn’t tell a soul about her diagnosis.
She went through her first treatment with only family beside her. She took leave from work, since the treatment took so long. When that first treatment failed, she was met with difficulty finding a new job, all while avoiding telling any employer what was going on.
Meanwhile, I graduated high school only to encounter other aspects of stigma and hep C. I intentionally avoided talking about my diagnosis, especially at work — until I had to.
Stigma at work
Telling my supervisor that I was about to start my first treatment was the opposite of everything I’d come to expect. My supervisor was kind and helped me schedule around my treatment.
A few months later, I accidentally bled on a piece of equipment. After cleaning it, I felt it was my responsibility to inform everyone of the potential risk of exposure. I used rubbing alcohol to clean the tool, but there was still the possibility that the hepatitis C virus (HCV) remained on it.
I called a meeting and gave a brief explanation of HCV, telling my coworkers that I contracted the virus in utero, and that it can only be transmitted via blood containing HCV. I wanted to warn them against any potential risk, even if the risk was small.
I asked them not to tell anyone else outside the staff. A day later, I was called into my supervisor’s office.
My supervisor explained that one of the staff had threatened to quit if my supervisor didn’t fire me, and that the staff member had reported me to the main office.
My supervisor explained that this would never happen, and she assigned that staff member to work under me. To me, this was a chance to change her mind about the fear she had regarding hep C.
Within the next few months of working with me, she grew more tolerant. At the time, I was working at an after-school program, and my group of kindergarteners became obsessed with the games and songs I’d lead them in. It’s harder to dehumanize someone when everyone around them thinks the world of them.
The more conversations we had, the more human I became to her. We didn’t talk about hep C or my side effects. Instead, we talked about life and the students.
Stigma where you’d least expect it
Stigma around hep C happens in all aspects of our lives, even the most private ones.
I had many conversations about hep C with women I was only starting to get to know when I was 23 and single. For me, it was a requirement to let them know about my diagnosis before sex.
Unfortunately, this meant facing a strange kind of rejection, which took a long time to get used to. It’s hard to deal with stigma to your face, especially during moments when you reveal a secret.
But just as HCV is systemic, so too is its stigma. I even encountered stigma in the place where I expected it least: the hospital.
When I was 18 and recovering from a botched biopsy, a warning was attached to my door saying that I had HCV. This warning was so effective that the fear in the nurses’ eyes is still memorable to me 14 years later.
Addressing stigma head-on
Recently, I was returning from an advocacy conference while wearing a shirt explaining my hep C status. My flight home got bumpy when I was pulled off the plane and spoken to about my shirt and hep C because another passenger was concerned about it.
It was a startling experience, but I was so used to it that it took a moment to understand exactly how inappropriate it was. I reached out to the airline via Twitter and wrote an article about it when it happened.
The airline apologized, but the biggest thing I hoped would come out of my experience was to help others talk about their experiences with hep C.
Talking about stigma and addressing its forms is the best way we can break it down. Occasionally, people avoid getting tested or treated because of stigma, and from someone who has lived with it all his life until last year, don’t wait.
You can get cured and you can move forward. Treatments nowadays are usually between eight and 12 weeks, with some extreme cases requiring 24 weeks. If stigma is pushing you away from treatment, the best thing to do is face it and get cured.
A catalyst for change
The challenge with events like the ones above are that, like infection, they’re something that happens to you. The difference is that, sometimes, life gives you a chance to guide others so that what happened to you doesn’t have to happen to them.
The biggest thing I learned from stigma is to ignore the “about face” and to show my face. I learned to be louder than I was before. I used my frustration and my weakness, and turned it into my strength.
In 2014, I started becoming more of a hep C advocate. Since then, I’ve been to the state capitol several times to help others, and I’m a patient advocate for several nonprofits, universities, and other organizations.
I don’t expect everyone to react the same way I did to stigma, but I do champion the notion.
Sometimes when we cannot help ourselves, we can help others, and in doing so, we find that we’re helping ourselves at the same time.
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.