Most people are surprised to learn they have hepatitis C. Many people believe they were never at risk for acquiring this virus, so they cannot imagine how they contracted it. Other people have a definable risk factor, such as a history of intravenous drug use, but feel that it occurred such a long time ago that it has no relevance. And some people do not know exactly how they contracted it. In fact, the CDC now recommends that all baby boomers – those born between 1945 and 1965 -- get tested for HCV. It is normal to have a lot of questions, and to feel the stigma attached to having a potentially infectious disease.
To get past that feeling, get the right type of support -- both medical and emotional.
Hepatitis C is a sneaky virus. About 80% of infected people don't have any symptoms of the virus, and their liver shows only a little damage. Many of these people are diagnosed with hepatitis C after showing abnormal liver enzymes on routine blood tests. Other people -- about 5% to 20% -- develop cirrhosis after having the hepatitis C infection for 20 or 30 years. This is when the normal functioning liver is replaced by scar tissue. A smaller number of people develop liver cancer after infection...
For a person with HCV, finding the right doctor is very important. Although HCV can be cured, in many instances, someone with chronic HCV will be under the care of the same doctor for many years or possibly his or her entire life. There are many different kinds of doctors who evaluate and treat people with liver disorders. It is essential to find a doctor who has a significant amount of experience in taking care of people who have HCV. Information about HCV rapidly changes. Thus, unless the doctor deals with HCV multiple times a day, it is unlikely that he or she will be up to date with information.
The Internet may be considered a double-edged sword when it comes to HCV support. There is just as much misinformation about the disease as there is accurate information. The number of Internet web sites continues to grow at an explosive rate. It can be difficult for the lay person to determine which information is correct and which is not. It is most important for the patient using the Internet to determine who is sponsoring the web site -- is it a reputable liver specialist or someone trying to sell a product? Is it another patient giving his/her opinion on HCV or is it a not-for-profit hepatitis-related foundation?
Support Groups for Hepatitis C
As helpful as family and friends are, it's still hard for them to understand exactly what you're going through with hepatitis C. You may want to seek out other people living with the virus. You can ask your doctor about support groups in your area. You may also find support groups on the Internet.
But take care in choosing a support group, and switch if the one you joined doesn't feel right. Sometimes, support groups -- especially on the Internet -- can devolve into people trading scary stories that don't reflect the experiences of most people with the disease, cautions Thelma King Thiel, chair and CEO of the Hepatitis Foundation International in Maryland. "Just make sure to find a support group that makes you feel better," she tells WebMD, "rather than one that makes you feel worse."