Should You Share Your Diagnosis?

Patient advocate Rick Nash sometimes wears a T-shirt that reads, “My pre-existing condition is Hepatitis C.” (It’s also known as Hep C or HCV.) He uses it to start conversations about the disease.

Nash believes open conversations can help debunk myths and reduce the stigma surrounding Hep C. But not everyone is willing or able to be so open. Whether or not you talk about your Hep C diagnosis is up to you.

When it comes to telling others about your status, there are a few tactics that might help the conversation flow better.

Talk to an intimate partner

It’s important to be patient and open to any questions your partner might have. It’s likely they want to know how you got Hep C and if they could have it too.

Such questions are natural. But often they are difficult to answer.

Paul Bolter, community outreach and education manager at the American Liver Foundation in New York, explains why.

“There is still a lot of stigma and shame surrounding 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 take the hurdles:

Explain that Hep C is a virus that spreads through contact with an infected person’s blood. IV drug use is one possibility, but there are others. They include:

• pinprick
• blood transfusion
• Organ transplant before 1992

Tattoo or body piercing equipment that is not sterile can also cause this. Some people, like Nash, get the infection at birth.

Tell them that hepatitis C rarely spreads through sex. It’s slightly more likely if you’re having rough sex, anal sex, or sex during an outbreak of a sexually transmitted infection (STI).

Discuss safer sex opportunities, such as using a condom when making love or having sex on a woman’s period, which can cause bleeding.

Encourage your partner to get tested. Angelica Bedrosian, MSW, 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 as long as it takes to build up antibodies to the virus.

“[Make sure they know] The test is simple and Hep C is curable,” she says.

Talk to your family

Bedrosian says you don’t have to tell your family your Hep-C status unless you want to.

She explains that living alone with someone who has Hep C is not risky. You just have to take a few precautions. Do not share personal items that may have blood on them, such as razors, toothbrushes, and nail clippers. If you live with children, keep these items out of reach.

If you decide to talk to your family:

Explain that the Hep C virus spreads in different ways. You don’t have to say how you got it.

Reassure your family that they cannot get Hep C from you. even when hugging, kissing or sharing food or cutlery.

Tell them Hep C is curable. If caught early, Hep C is curable about 98% of the time, says Robert Brown Jr., MD, chief of gastroenterology and hepatology at the Weill Cornell Department of Medicine in New York.

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 Americans have higher rates of hepatitis C than other groups. But too few know about the disease or are tested for it.

Brown says there are several reasons for this.

“There is less access to care and there is less trust in the medical system,” he says. “Stigma is [also] a key problem. We need to break down the stigma to remove barriers to care.”

Brown sees “the solution is to have less stigma, and then more people could talk about it.” This is the opposite of Nash’s belief that more talk leads to less stigma.

Bedrosian is somewhere in between. She believes that learning how to talk about Hep C works best for people. She points to HEP’s outreach programs. This includes 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 taboos are gradually broken down,” she says.