Living with a chronic disease like hepatitis C can be depressing and nerve-wracking. Coping with the side effects of treatment isn’t easy either. But another difficult aspect of having the disease is how it can interfere with your relationships.
“People with hepatitis C experience a lot of stigma,” says Alan Franciscus, executive director of the Hepatitis C Support Project in San Francisco. “It can be really hard.”
You may avoid talking to friends or family about the disease because you’re worried about how they’ll react. You may feel a temptation to pull away from people you care about rather than risk them knowing.
But you can’t. The fact is that now, more than ever, you could use people to rely on. Keeping open and honest relationships with your family and close friends is key to your own well-being.
Coping With the Stigma of Hepatitis C
People with hepatitis C are often anxious about how other people view them. In reality, hepatitis C is a disease that infects all sorts of people from all sorts of socioeconomic backgrounds. And public perceptions of people with hepatitis C may be more sympathetic than you think.
The American Gastrointestinal Association conducted a survey of public understanding of hepatitis C, questioning about 500 people with the disease and about 1,230 people without it.
The survey found that about 74% of the people infected with hepatitis C believe that others think the disease only infects unhealthy people or drug addicts. However, when uninfected people were asked, it turned out that only 30% had this impression. Only 12% said that “people like themselves” didn’t get hepatitis C.
Obviously, plenty of people with hepatitis C do experience stigma, and plenty of uninfected people have wrong ideas about the disease. But take comfort from the fact that people may not be as hostile as you expect.
Talking to Your Family and Friends About Hepatitis C
Of course, whom you tell about your hepatitis C is up to you, but there are some people who really should know. You need to tell your family, your spouse, your sexual partners, and anyone else who might have caught the disease from you. The chances are small that any of these people have hepatitis C, but it’s important that they know so that they can be tested and treated if necessary.
Telling others you have hepatitis C isn’t only for their benefit. You also need the support of family and possibly some close friends in coping with your illness. “Some of the biggest problems people have with treatment stem from not being supported at home,” says Franciscus. “People really need help from family and friends to get through it.”
It happens occasionally that family or friends react harshly to the news, says Franciscus. They may be both worried about your health as well as their own. They may be afraid of the future. They may be unsure whether they’ll need to take care of you. As you might imagine, these conversations — and their aftermath — don’t always go smoothly.
So to make things easier and reduce the risks of misunderstanding, prepare for the conversation before you sit down to talk. “When you talk with people about the disease, you need to be armed with the facts,” says Franciscus. Explain that:
• Hepatitis C progresses slowly and may not cause symptoms for decades, if ever.
• Hepatitis C is a manageable disease. If you ever do get symptoms, treatment may help.
• Hepatitis C is difficult to pass on to someone else, so the risk of transmission within a family is very low.
If you have information to give people right away, it will make the conversation a lot easier.
Talking to Your Partner About Hepatitis C
Because hepatitis C can be spread sexually, it’s especially important to talk to your partner or spouse about it.
Happily, the risks of catching the virus through sex are low. Of course, if you have multiple sexual partners, you should still use a condom. Condoms protect them from hepatitis C and protect you from dangerous sexually transmitted diseases. But if you’re in a long-term monogamous relationship, the CDC considers the risk of sexual transmission so low that it doesn’t even recommend using protection.
“It’s very reassuring to people (in monogamous relationships) when they find out that they don’t need to change their sex practices,” Franciscus tells WebMD. Still, never keep your partner in the dark about your condition. You need to talk about it.
David Thomas, MD, professor of medicine at Johns Hopkins School of Medicine, says that he always makes sure that his patients with hepatitis C bring their spouses along to at least one appointment. In part, he says, it’s to make sure that both people fully understand the risks of sexual transmission.
Thomas says that people react very differently to the news. Some couples are comfortable with the small risk and don’t feel like they need to use condoms. Others are more nervous and want to use protection. There’s no right answer. The key is this: You and your partner must talk about it openly and come to a decision together.