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."
Hepatitis C can be treated and even cured. And treatment is important -- hepatitis C, caused by a virus, can permanently damage your liver if you don't take medicine for it.
Treatment for hepatitis C keeps changing quickly. The standard treatment was typically interferon along with other drugs -- usually ribavirin and either Victrelis (boceprevir) or Incivek (telaprevir). But newer drugs Olysio (simeprevir) and Solvadi (sofosbuvir) cure more people in less time with fewer side effects. Doctors...
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 should 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. It's for your benefit too. You need the support of family and possibly some close friends to help you better cope 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 likely make the conversation easier.