Should You Share Your Diagnosis?
Patient advocate Rick Nash sometimes wears a T-shirt that reads, “My pre-existing condition is hepatitis C.” (It is also known as hep C or HCV.) He uses it to jumpstart conversations about the disease.
Nash thinks frank talk can help debunk myths and ease the stigma around hep C. But not everyone is ready or able to be so open. Whether to talk about your hep C diagnosis or not is up to you.
If you want to tell others about your status, there are some tactics that could help make the conversation go better.
Talking to an Intimate Partner
It’s important to be patient and open to any questions your partner may have. It’s likely they’ll want to know how you got hep C and whether they could have it too.
Such questions are natural. But often, they’re tough to answer.
Paul Bolter, community outreach and education manager at the American Liver Foundation in New York, explains why.
“There’s still a lot of stigma and shame around the disease. The first thing people think of is drug use or sexual transmission,” he says.
Even Nash writes that talking about hep C can feel like “you’re revealing a deadly secret.”
To get over the hurdles:
Explain that hep C is a virus that spreads through contact with an infected person’s blood. IV drug use is one way, but there are others. They include:
- Needle stick
- Blood transfusion
- Organ transplant before 1992
Tattoo or body piercing equipment that’s not sterile can cause it too. Some people, like Nash, get the infection at birth.
Tell them hep C rarely spreads through sex. It’s a little more likely if you have rough sex, anal sex, or sex during an outbreak of a sexually transmitted infection (STI).
Discuss safer sex options, such as using a condom if you make love during a woman’s period or have sex that can cause bleeding.
Encourage your partner to get tested. Angelica Bedrosian, MSW, a prevention and outreach coordinator at the Hepatitis Education Project (HEP) in Seattle, says most adults should get a hep C test at least once. Anyone who injects drugs should have a test every 6 months, about the time it takes to build up antibodies to the virus.
“[Make sure they know] the test is simple and hep C is curable,” she says.
Talking to Your Family
Bedrosian says you don’t have to disclose your hep C status to your family unless you want to.
She explains that on its own, living with someone who has hep C isn’t risky. You just need to take a few precautions. Don’t share personal items that might have blood on them, like razors, toothbrushes, and nail clippers. If you live with children, store these items out of reach.
If you do decide to talk to your family:
Explain that hep C virus spreads in different ways. You don’t have to say how you got it.
Assure your family they can’t catch hep C from you, even if you hug, kiss, or share food or utensils.
Tell them that hep C is curable. If caught at an early stage, hep C is curable about 98% of the time, says Robert Brown Jr., MD, chief of gastroenterology and hepatology at New York’s Weill Cornell Department of Medicine.
Don’t be afraid to ask for your family’s love and support, as well.
Hep C Communication Among Minorities
African Americans and some native peoples have higher rates of hepatitis C than other groups. Yet too few know about the disease or get tested for it.
Brown says there are several reasons for this.
“Access to care is less and trust in the medical system is less,” he says. “Stigma is [also] a key problem. We need to reduce stigma to eliminate barriers to care.”
In Brown’s view, “The solution is to have less stigma and then more people could talk about it.” This is the reverse of Nash’s belief that more talk leads to less stigma.
Bedrosian falls somewhere in between. She thinks it works best if people learn how to talk about hep C. She points to HEP’s outreach programs. They include a peer-training model that describes how hep C spreads, how to prevent it, and how to educate others.
“This is how educational messages are best received, and how taboo is dismantled little by little,” she says.
