Hepatitis C Stigma: "So, How'd You Get Hep C?"
Today, HepatitisC.net advocate Daniel Winterbottom shares his experiences with hepatitis C, including diagnosis, stigma, and risk factors, as well as his advice for others.
Do you know how or when you were exposed to hepatitis C?
I don’t know for sure, but I assume it was in the 1970s or 1980s and that I was infected through a contaminated needle. I was not diagnosed until 2017, so any refined level of exactitude is not possible.
How do you respond when people ask, "How'd you get hepatitis C?"?
To be honest, and maybe a bit surprising given that I’m writing for a hep C community, but most people don’t know that I had/have hep C. I had notified only my closest family members, who were aware of some choices and detours taken in my youth. If someone asked today, I’d tell them the truth. Most people assume that anyone infected with hep C contracted it through IV drug use; While injection drug use is the leading risk factor for contracting hepatitis C, it is unfair to make these assumptions; This is not the only means of transmission.
In fact, as the CDC has stated: “People can become infected with the hepatitis C virus during such activities as:
- Sharing needles, syringes, or other equipment to prepare or inject drugs
- Needlestick injuries in health care settings
- Being born to a mother who has hepatitis C
Less commonly, a person can also get hepatitis C virus through
- Sharing personal care items that may have come in contact with another person’s blood, such as razors or toothbrushes
- Having blood-to-blood sexual contact with a person infected with the hepatitis C virus
- Getting a tattoo or body piercing in an unregulated setting”1
What's your advice for people who are afraid to talk about their hep C diagnosis, or how they were exposed?
Discussing how one contracted hep C is a complicated, personal decision, with a spectrum of concerns and nuances that differ for each individual. Some may have supportive, receptive receivers of this information, others may not be so lucky. In some cases, it could dismantle an impression diligently crafted and that represents who they have become, For others coming to terms with their past, this may involve speaking openly about past behaviors and addictions.
There is reasonable justification to be fearful of social media and the impacts that a public broadcasting of their personal details may elicit. What impact will revealing their diagnosis have on their employment, relationships and health insurance? Many of those infected have faced stigmatization, categorization, prejudice, and bigotry, thus it is not surprising that one rebuilds their lives, wearing the "scarlet letter” of past behaviors could be painful and counterproductive. There is a feeling among many that we can all be open, that we will be forgiven, accepted and embraced. The reality is that hep C is one of the most stigmatized illnesses. Like for some people affected by AIDS/HIV, the benefits of being open and honest about hep C may be quite minimal when compared to the stigma leveled at them. But, everyone has a different experience, and some want to be open and honest about their hep C experience.
Have you ever felt judged or stigmatized for having had hep C?
Yes, all the time. I often heard friends discuss the subject unaware I was positive and if they knew, their feelings about/towards me would change. While we might remain friends, stereotypes are surprisingly persistent and the effects often pernicious. As with so many other stereotypes, those surrounding hep C are more often based in ignorance, feed by media sensationalism, and not in a holistic understanding of the nature or the effects of the disease. As Marinho and Barreira describe, “Hepatitis C is not only a liver disease and a cause of cirrhosis, but also a mental, psychological, familiar, and social disease. The stigma that the infected person sometimes carries is tremendous having multiple consequences. The main cause is lack of adequate information, even in the health professionals setting".2
Part of the hep C stigma is related to fear of contraction and consequences when it is acute. My perception is that the younger generation is less judgmental, maybe in part because of the increasing awareness and reduced fear around AIDS. However, unlike AIDS that is more often transmitted through sexual contact, hep C is often perceived as only contracted through shared needles. The chances of contracting hep C for those not sharing needles is relatively low, and the small risk of sexual transmission can be easily addressed through use of a condom.
As stated by the U.S. Department of Health & Human Services, “New HCV infections are most common among people who inject drugs. Sexual exposure is the second most common risk factor and is highest among persons with multiple sex partners and men who have sex with men. Older adults are more likely to have HCV than are younger adults. Seventy-five percent of people with chronic HCV are “Baby Boomers,” born between 1945 and 1965."3 Given the realities of hep C transmission, the stigma associated with IV drug use and continued fear around hep C will prevail, unless we continue to share information and spread awareness.
Share your story in our stigma forum.