A friend recently told me that he has hepatitis C. He didn’t tell me up until now, because he worried it would change the way I see him. His feelings are not unusual. Many people feel that they need to hide their hep C.
Unfortunately, hep C is still a stigmatized disease. There are some diseases that elicit empathy (such as childhood cancer) and some that elicit more judgment (such as lung cancer in those who have smoked). Those that afflict people “at random” typically garner more public empathy, while those that are thought to be primarily the result of “choices” are often stigmatized.
Hep C is most often associated with injection drug use in the U.S. In the 60s, injection drug use was part of the “sex, drugs and rock and roll” era, and many people tried it, just as youth now try pills at parties. The consequences were not known. Long-term injection drug use is most often part of a complicated story of escalating addiction and avoidance of debilitating withdrawal that would be difficult to judge if truly understood.
Not all people who have hep C got it through drug use. Other major risk factors are blood transfusion before 1992, poor infection control in health care, shared tattoo or piercing equipment, and military experience. Furthermore, 70% of people with Hep C don’t know how they got it. They had a blood exposure at some point in time, and do not know where.
Although disclosing any personal information should be a choice, keeping a secret has costs such as: feeling alone, anxious, depressed, and a fear of being unable to have real or truthful relationships. Also, people who feel the need to hide their health conditions are more likely to delay seeking care, and have low support through the process of care and treatment.
It’s not necessary to sing a diagnosis from the mountaintops. There is a middle ground - in which the information is neither offered readily, nor hidden. The information can be provided on case-by-case, or a need to know basis. Even sharing the information with one person can provide tremendous relief and support.
In case you do feel like singing from the mountains, there is a need for people with hep C to come forward and share their stories. Too little is known about the experience of living with hep C. See examples of personal stories on Health Central and Hep Free NYC.
Sharing your story with people you trust is one step toward better holistic health for you. Being willing to share your experience with others to raise awareness is a powerful way to promote prevention and health care access for all with hep C.
Nirah is a clinical social worker and public health professional who has been raising awareness about hepatitis C and liver health in NYC since 2007. She organizes the Hep Free NYC network in NYC. @HepFreeNYC