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Horror Stories about Hepatitis C Treatment

Horror Stories about Hepatitis C Treatment

Today, I felt so much anger inside that my face got hot. I heard from a reader who was working up the courage to get hepatitis C treatment. Then a friend told them about their own experience with treatment. They came up with a lot of reasons why this guy shouldn’t treat. Sometimes, I want to explode after hearing some of the horror stories people tell about hep C treatment. Now, I know that everyone has an experience, and they have a right to tell about it. But sometimes, it needs to be toned down a bit.

It reminds me of when I was expecting a baby. Women would come up to me and tell me their stories about almost dying during labor. Some of the details that they would give scared the daylights out of me. Is that really necessary? I say no. Let’s put an end to how we react to some of the scary horror stories that are going around.

What should you do when you hear someone’s sad tale of woe?

Listen to their story. Every person’s experience is valid. Maybe they just need to tell it all so they can kind of sort through it.

Nod your head every once in a while. Make good eye contact. Let them know you are listening.

Ask yourself why this story is important enough that they need to tell it. Maybe no one else has sympathized with them. Perhaps you are the first person they felt considerate care from.

Express sorrow if they experienced hurt, pain, shame, or fear. By doing so, you are helping them to connect with their feelings.

Offer support if they need it. Tell them that you can assist in an area where you have time or resources.

Be willing to interrupt them if it is just too much.

If they begin to tell you that YOUR experience is going to be just as bad, let them know that you are hopeful for a good outcome.

When they start running down every medical professional just because their doctor didn’t meet their needs, switch it up. Tell them you are in good communication with your medical team and that they seem to be trying hard to help you.

If they think there are side effects from hepatitis C treatment that are impossible to live through, let them know that you are learning about the medications and making plans in case you do experience side effects.

There are those who go on and on about how the effects can last forever and that you will never recover. Explain that you are looking at the positive outcomes.

Most of the time, people just need someone to listen. When you have a story to tell after treatment, it may sound scary to others. But you will have lived through by then.

All of these things are very real to the person who goes through them. I have some horror stories myself. If you have read any of my blogs, you know that I kept a positive outlook and was able to live through it all. Tell them you have a friend who has a few horror stories, and that you’ve learned from her and are ready to treat.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Cas
    3 years ago

    My experience wasn’t too bad. The usual tired kinda grouchy and nausea. My only big issue was fighting for approvals and I was unhappy with my doctor…still unhappy with the doctor…pick your doctor well…someone with experience dealing with disease or dis ease…lol I dont know what he expected from me but it took years to be ok with hep c and as it was part of me for so long I dont know how to accept the loss or why I am feeling a loss…

  • Kelly McNamara moderator
    3 years ago

    Hi Cas! Thanks for sharing your experience so honestly with the community! So sorry you experienced an uphill battle with approvals! – Kelly, Team Member

    3 years ago

    Oh how true on everything you said but then again here a veteran of 5 treats it was no picnic. The side effect was no secret to keep, however in many forums I Always have encouraged others from my story about how I dealt with it throughout the many years it took to finally be cured. I always told people and friends that everyone reacts different to different treatments and to consult their doctor how to get through treat. Remaining positive and their encouragevent is what made me be so determined to never give Up! I’m so glad I didn’t. If I had to do it over again, I would. An ex 1a Cured but have ESLD, Cirrohosis, enlarged spleen and live but living a longer life now. Thank you again for this article.

  • Karen Hoyt moderator author
    3 years ago

    It sounds like we have a lot in common. But 5 treatments. You’ve got me beat. It would have been easy to resign yourself to discouragement, but it sounds like you kept your chin up.
    I’m glad to hear that you continued to fight for the right to be Hep C free. I did too and am free from 1a also. You sound like you’re mentally strong and that is no easy thing with ESLD. Congratulations. Thank you so much for writing.

  • Gini
    3 years ago

    What is the point of this essay? You are dealing with a population that has been shamed into shutting up for 3 decades. A population told at every turn false cure rates and denied any side effect as if the drugs were harmless and we were nut. You dare compare that to moms telling their labor stories. Vietnam Nam would have been a better comparison of lies and people being used. And just to be clear many of us were far more damaged by the treatments then the Hep C itself and so that’s another perpetuated lie because many of the blogs are supported by pharmaceutical company’s. I find this article very nieve. We have a voice now and after 4 tx now cured I say to people who have just recently gotten Hep C and are in good health and not drinking – hold on a bit for them to further improve meds and doses because I for one found the lasting side effects of the new antiviral Harvoni horrifying in that I can no longer walk long distances as I use to love to do. So there’s my voice.

  • Cas
    3 years ago

    Thank you Gini…sometimes I feel alone in this …makes me sad we cant just talk real…Im tired and my eyes wont focus but I have 20/20 vision…doc says theres nothing wrong with you…

  • Karen Hoyt moderator author
    3 years ago

    So glad I was online this morning to hear your voice. Well put. I feel your anger. The point of this essay is that I was at end stage liver failure and was discouraged from treating. I was at a reception with my treating transplant surgeon recently (my regular doc wouldn’t treat me) and we talked about how much courage it took to muster up and take the meds… and how I probably wouldn’t be here if I had not.
    The comparison to pregnancy may have been too personal for this forum and slanted toward women. I was high risk pregnancy due to DES exposure when my mom was pregnant with me. Lots of congenital female mess. It was the only other scary time in my life where something that could be positive could also kill me and it’s always close in mind when I talk with people who are afraid of dying from treatment.
    My advice is usually targeted at people like myself, who are really sick. They want treatment, need advice, are looking for support, and don’t have an easy time wading through a lot of medical jargon or worst case scenarios.
    It sounds to me like you are a veteran. If you’ve survived 4x treatment, you’ve probably lived up to and through advanced liver disease. I’m sure you’re familiar with all the side effects of the disease and the treatments. I too live with many side effects from the old school home injections. I truly am sorry that you have to live with that. I’m sorry for all of us.
    I agree with you. By no means do I endorse running out with a brand new case of HCV and getting treatment. The newer drugs and shorter treatment duration are miraculous.
    We have a lot of ideas in common. Thanks for bringing up the veterans viewpoint also. I don’t always have an easy time thinking clearly. Having hepatic encephalopathy for years took a toll on my brain. My heart is always to encourage and empower. Again, we agree that people with HCV have NOT always had a voice and lived through powerless situations. We have made great strides in recent years and I look forward to seeing it get better and better.
    My views are my own and I take responsibility for them. By the way.. I walked 2 miles yesterday. I’m parked on the couch this morning. This will get better, right?

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