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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.

Comments

  • Carmen
    2 months ago

    I would like someone to please shad some light on the long term effects on Harvoni HepC treatment..there are a lot of sick people post treatment..

  • V143
    3 months ago

    Contracted Hep C after a medical procedure. In the 80’s you were diagnosed nonspecific A&B. Late 90’s I was finally told it was Hep C.
    Not one of my doctors encouraged me to get treated. 10 years later, Hep C was taking its toll, constantly feeling tired and abdominal pain. New doctor, liver biopsy, severe damage to my liver. Treated, Hep C negative. 4 years ago diagnosed with Heptacular Carcinoma, Meld Score 34 waiting for the call, liver transplant.

  • EllerMay66
    10 months ago

    I want all ppl with hepC to know they CAN get treatment even if on Medicaid. for 2 yrs certain Drs told me the state didn’t care…they would let me die. don’t fall for this foolishness. find a Dr that will help. they are out there! fight for your cure. treatment was not hard. and please don’t let anyone make you feel like you don’t matter…YOU DO !!
    but also know treatment is not a cure for damage already done. I’m limited still. but better than I was and im still LIVING! God Bless All❤

  • rhondareed
    2 months ago

    I was turned down by Medicaid 2x but luckily I had a Dr that wouldn’t give up. 3rd time I was approved! That’s the bad thing about this illness, it’s already done damage by the time you realize you have it! Encourage people to get checked!

  • Lauren Tucker moderator
    2 months ago

    Thanks for the comment rhondareed! I am glad to hear you got approved. How are you feeling today? Best, Lauren (HepatitisC.net Team)

  • Lauren Tucker moderator
    10 months ago

    Thanks EllerMay66 for being part of the community and for your post, we are glad to hear this! Best, Lauren (HepatitisC.net Team)

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