March 20, 2014
Story telling has always been a powerful medium for humans to express their experiences, so as to share with an audience that might be moved and enlightened by the details of a personalized series of events. Each of us has a very unique story regarding our lives spent with or without the hepatitis C virus (HCV). As well, we all have a distant memory of when we discovered being infected with the virus and how it felt to hear those impending words, “You’ve got hepatitis C.” But can you remember when it came to trying to explain it to someone else? No doubt you can, whether it was your GP, liver specialist or a loved one asking the dreaded question, “So how did you get it?” Your first thought might have been, “Does it really matter?” It still might be that you do not think it really matters, especially if you have undergone treatment and come out the other end without the need to think about these things anymore. But the way in which a person comes to be infected with hepatitis C does matter, even if someone chooses not to disclose it.
Yet discussion amongst people living with hepatitis C often focuses on the question of whether source of transmission really counts. On the other hand, much debate circulates about the level of risk associated with certain behaviors known to spread the virus. Whilst the majority of current HCV infections are a result of unsafe drug use, surprisingly, this isn’t always the topic of conversation, either. Not surprisingly, there still are many, many people living with hep C that are too scared to come forth and admit to the way in which they were infected. Some people argue that it does not matter how an individual was infected with HCV. When someone says that it doesn’t matter, it could be their way of trying to help someone feel better who might be affected by stigma because of a past or present history of drug use. After all, the hep C virus is often assumed only to affect “druggies” or “junkies”. Whilst such unacceptable language is slowly fading within the hepatitis C community, for those that remain ignorant and know nothing better, this kind of discriminating language and association still prevails.
If the way in which a person gets infected with the hepatitis C virus was simply not an issue, then awareness regarding the fact it is a blood-to-blood disease would not be a point in need of further clarification. After all, why not just say it is a disease of the liver that can lead to cancer? Simply because it is not just a disease of the liver. More specifically, it is a blood-borne virus that infects the liver and will lead to cirrhosis of the liver if left untreated. What is more, the way I was infected with hepatitis C is not necessarily the same way in which you were infected. Between you and I, there are similarities and differences that might also reflect the chronological timeline of the virus, such as when some sources of transmission were previously very risky but are not so much anymore, such blood transfusions. Today, I belong to the highest risk group, not to mention the most stigmatized and therefore marginalized: people who have a past or present history of using drugs which has led to exposure to the virus.
The way in which you or a loved one came to live with the hepatitis C virus is a very personal and sometimes sensitive subject. However, it can also be a question with an answer that can help the HCV community to build a much greater awareness, if only we can all take the time and effort to remain mindful and knowledgeable of each other’s experience. From our personal stories, we can learn from one another how to bring our attention to where it might not have been focused previously. We can create a more extensive support system as we continue to become more mindful of what it means to live with hepatitis C, because hepatitis C simply does not discriminate for the reasons we might. When a person comes forth with their story, it also allows for someone else to see and feel first-hand that it is ok not only to live with hepatitis C, but to own their own unique story, too.
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