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Spotlight: Living with Invisible Symptoms

So many symptoms of hep C whether emotional or physical are not visible on the outside. Let us know what it is like to live with an invisible symptoms. How do you describe what you’re going through to friends and family?

  1. To my family always complaining of feeling so tired both mental and physical it's draining dealing with rude people who act like I have the plague I tell them education is the best medicine look it up before you judge me now I have liver pain

    1. Hi snowman666! We so hear you on this! You are not alone in these feelings. I'm so sorry you're dealing with rude people and are having to experience these frustrations. You're right, education is a great thing, and learning a little about HepC and its side-effect can be so eye-opening for those who don't understand. Great point. Please know that no matter what is going on, we're here for you whenever you need a friend to talk to. Thank you for sharing with us, and we're glad to have you in our community! -Casey, HepatitisC.net Team

    2. I haven't told anyone for fear the same thing would happen to me. Screw Screw them. We are here.

  2. I was diagnosed with hepatitis C about 10 years ago. I was offered Interferon and Ribavarin. I declined. My symptoms worsened about 2 years ago where I had debilitating fatigue, brain fog and couldn't even carry a normal conversation. It is odd because my liver functions were normal. I was bedridden for 6 months. I began generic epclusa and within the first 2 months I had bruised legs with dark brown spots on my legs, going from anger to depression. My emotions were all over the place but I had mostly slept. By the end of the 2nd month of treatment I started to have some feelings of well-being, decreased fatigue, able to remember more and do some activities. By the end of the third month I almost felt back to normal. I felt I got my old self back. Since I am genotype 3a, I took 4 months of therapy. I had no cirrhosis, fibrosis or other problems.

    I received 6 units of blood after bleeding out after a hysterectomy back in 1988. The blood was given over a 2 day period. I am sure this is how I got it. I had 4 doctors misdiagnose me and ordered my own tests online, as it is legal in most states. At the time the genotype and viral count were not available, so I had to go to a doctor to get it. Although he said it was false positive I was persistent in knowing what type I had even though he did not think I had it. Once it came back he asked me to get an appoint ASAP. I decided to go to someone else who would listen to me. I have done a lot of research since the time of starting treatment and was amazed at all that hepatitis C can do. It not only affects your liver but affects you all over. I now try to support others and trying to get the word out so that hepatitis screening will be done routinely. I have read some of the stories on this website and they are truly inspiring, so thank you for sharing.

    1. Hi Gypsy! Thank you for taking the time to share all of that with us! WOW! What a journey you've had. First off, I'm so sorry to hear about all you've had to endure, however, I'm SO GLAD to read that you're starting to feel like your old self again, and that the epclusa treatment went well! YAY! I'm also so glad to hear that you were such a strong advocate for yourself and for your health. Your research, persistence, and strength are incredible. We're so glad to have an advocate like you in our community, and that you're dedicated to supporting and educating others. Amazing!! Thank you again for sharing. -Casey, HepatitisC.net Team

    2. Thank goodness you did not take interferon with ribiviran as your treatment. I can tell you that all those symptoms you went through, I continue to go through after over seven years being virus free. The pharmaceutical company still refuses to admit that there have been long term side effects for many of us who did take interferon. Hundreds of people and more, who are,experiencing similar side effects post treatment. I warned everyone i could, not to take interferon. I have severe fibromyalgia and chronic fatigue syndrome as well as other health issues. I function at less than 30 percent of normal. I relate to what you went through, because I still go through it. I wish I had waited for new treatments. I was genotype 3a. I do my best to stay grateful for what I can do, however my life has been changed forever. I don't give up hope that more research will be done about post --treatment illness. Thank you for sharing your story..

  3. No one knows that I have hep c. This is why I’m glad I have you guys. I know people that I know will judge even though they have know right to. I have terrible anxiety and depression but I put a happy face and attitude so I’m doing ok

    1. Hi ,
      I'm so sorry for all you're dealing with. No one deserves to be judged!! Many in our community also struggle with the decision to tell others about their diagnosis. I've included some articles if you're interested: https://hepatitisc.net/living/reveal-or-conceal/ and https://hepatitisc.net/living/to-tell-the-truth/ and https://hepatitisc.net/living/who-do-i-tell/. We're so glad you've found our community and know that you are supported here!

      We have a special section about the emotional burden of hep C. Many also feel depressed and anxious. https://hepatitisc.net/emotional-burden-living-with-hep-c/ Please know that we are here for you!!
      Thinking of you!
      Sara (HepatitisC.net team member)

  4. My name is Vladislav. I'm from the city of St. Petersburg. I recovered from Hepatitis C. It costs from 3000 to 6000 $
    I want to help with advice. Ready to meet people and help them.
    I organize a hotel and the delivery of tests that would prescribe a course of treatment for the virus.

    telegram : @natco_partner

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