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What Do You Wish Others Knew About Hepatitis C?

There are many myths and misconceptions about hepatitis C, primarily because some people know very little about the condition. To learn more about life with hepatitis C, and to spread awareness, we asked our advocates, “What do you wish others knew about hepatitis C?”. Check-out what they had to say:

What our advocates wish others knew

From Bill

In short, hep C is not who we are. In many ways, we can feel defined by our actions. In other words, the things we do seems to define the person we are. Since there is so much stigma surrounding hep C, I think we can become a casualty of hep C just based on the stigma that surrounds it. For example, many of us contracted hep C through risky behavior. I did. I shared needles. At the time, that behavior defined who I was. I was a junkie.

That’s not the case anymore. Honestly, it never was. That was my behavior. Sometimes, I behave less thoughtfully than I (or my wife) would like. That does not make me a thoughtless person. Similarly, my having had hep C does not bond me to the poor choices and risky behaviors of my past. If anything, it frees me from them as long as I acknowledge the difference between me and the disease. Read more about Bill here.

From Daniel

That it is not a death sentence and can be cured, and that in most cases, it is hard to transmit and those with it should not be feared or ostracized. Read more about Daniel here.

From Debra

I wish that others knew that hepatitis C is a curable disease. I wish others knew to ask for a routine screening while getting an annual physical. And to review one’s own drinking or illicit drug use. Read more about Debra here.

From Karen

I wish others knew that it can cause permanent damage unless they get treatment. The damage is slow to come on for some, but no one gets away without getting some damage from hep C. I wish others knew how to organize their life around getting better. By looking at the big picture of who will support them, which doctor they can trust, and how to pay for treatment, everyone can be hepatitis-free. I wish others knew that they could live a new lifestyle and have a happy future. By letting go of past diet, habits, and relationships that were toxic, they can create the life they deserve. Read more about Karen here.

From Kim

I wish others knew that we are not contagious. We have feelings and insecurities about having this disease.  It is not contracted by a hug, kiss, or holding hands. It is NOT an STD. Read more about Kim here.

From Randy

Sadly, there are still millions of undiagnosed people with hep C. Much more awareness and diagnosis is needed. Many barriers (fear, stigma, poverty) still exist. My fervent wish is that no one be shamed or feel ashamed about having hep C. It’s a progressive chronic illness and people deserve good healthcare, compassion and support as with other chronic illnesses. There is a cure and everyone deserves to get it. Read more about Randy here.

From Rick

I wish others knew how slow, but deadly, it is and that there are several cures. That for the first decade or so, things typically are fine, so it isn’t this unpreventable death sentence, you typically have a little flexibility in finding the right treatment at the right time. Read more about Rick here.

From Sue

I wish others would know that there is nothing to be ashamed of when diagnosed with HCV. Also, there is a cure for close to 100% of patients and treatment is quick and easy. Read more about Sue here.

What do you think?

What do you wish that others knew about hepatitis C? Have you come across frustrating misconceptions about hepatitis C? Share with us in the comments or by submitting your own story here.


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