What Life Is Really Like After a Hep C Diagnosis
Three former patients break down what to expect before, during, and after treatment for hepatitis C. by Amy Marturana Winderl Health Writer
Every hep C diagnosis story is different. Some finally understand what was causing certain symptoms—others feel completely healthy and, upon hearing the news, are completely startled.
Your diagnosis may reveal something about your past that you never knew happened, like a blood transfusion with infected blood as a baby, or it can bring to light the effects of a risky lifestyle, like using and sharing injection drugs. You may get diagnosed unexpectedly during a routine blood test or while donating blood, or it may come after a long journey of trying to figure out what’s making you feel so crummy.
But once a hepatitis C diagnosis happens, there’s one thing that’s almost universal: You’ll wonder how your life will change. To help you feel as informed and prepared as possible, we talked with three people who have been there. Here are their stories, plus what they wish someone had told them shortly after being diagnosed with hepatitis C.
My Diagnosis Story: Emily Feikls, 20, Kane, PA
When Emily Feikls donated blood at her high school blood drive in 2016, she never considered it could change the course of her life. But shortly after that day, Feikls got a letter in the mail saying she had hepatitis C antibodies, which are specialized immune cells our bodies create to fight a virus we’ve been exposed to at some point.
Antibodies in your blood mean that the immune system has seen the hepatitis C virus (also known as HCV) before, but it doesn’t mean there’s active virus in the blood—there’s a different test to check for that. Feikls did that test and was told she was probably exposed to HCV at some point, but not actually infected.
Fast forward one year, and Feikls started noticing some strange symptoms, like extreme fatigue and bloating. “Doctors said I was just stressed,” she says. “No one was really listening, because on the outside, I looked okay.”
She went off to college and quickly realized she was not, in fact, okay, and made it her mission for the next year to figure out what was going on with her health. She saw multiple doctors, most telling her that everything was inflamed, but they didn’t know why. Feikls received no recommendations to see a liver specialist until she opened up to a friend’s husband, who is a physician. That’s when it became official: Feikls was not only living with HCV, but she had a very high viral load, or amount of the virus, in her body.
It’s unclear exactly how she was infected, but her mother had hep C when she was a child, so doctors believe Feikls was exposed at some point while living with her mom. Now that she finally had a diagnosis—three years after that initial blood test—Feikls started an eight-week treatment regimen right away. Three months after that? Another blood test confirmed she was cured.
My Diagnosis Story: Riane Nesper, 30, San Clemente, CA
Riane Nesper was first diagnosed with hepatitis C in 2008, when she was hospitalized after a drug overdose at age 18. “I don’t remember much about the hospital stay, but I remember the moment they told me,” she says. “I had heard stories about hep C from people in recovery—and that treatment at the time, called interferon, was gnarly.”
Nesper left the hospital that day and returned to her normal life. Over the next decade, she repeatedly tried to get clean so she could be treated for HCV, but she just wasn’t motivated enough to make it happen. And then, 10 years after her diagnosis, Nesper finally got the incentive she needed: She was pregnant with a baby girl and she quit using immediately.
After giving birth, Nesper experienced symptoms like extreme fatigue, chronic night sweats, gastrointestinal issues, and brain fog. She thought her symptoms were maybe post-partum related, and even her doctors weren’t sure what was behind them. Though she’d mentioned her prior diagnosis, some felt the symptoms didn’t line up with HCV. Finally, one sent her to a liver specialist who confirmed the virus was indeed active in her blood. Nesper started her 12-week treatment journey and was cured of hep C. Her daughter was also tested and luckily did not contract hep C while she was in the womb.
My Diagnosis Story: Jess Dang, 38, Mountain View, CA
Like Feikls, Jess Dang first found out she had hep C from a high school blood drive. Multiple blood tests and a liver biopsy soon revealed her liver was already showing some damage.
It was 1999 at the time, so direct-acting antivirals (DAA), the gold standard of hep C treatment today, weren’t available yet. Dang started on a combination treatment of interferon and ribavirin, which was common at the time. She spent that summer, after her freshman year of college, experiencing side effects similar to chemotherapy.
“I had hair loss and felt really fatigued in the beginning,” she says. “I felt depressed—though I’m not sure how much of that was because I was 19 and being treated for a chronic illness versus being related to meds I was taking,” Dang says. Unlike today’s treatments, which can often be completed in two or three months, hers took a full year. But it worked—Dang was cured of hep C. She still gets a liver enzyme test annually to make sure her liver (which had been inflamed and slightly scarred) is in a good place.
How was she infected? Dang had multiple blood transfusions when she was born in Vietnam in 1981. Back then, it wasn’t standard procedure to test blood for hep C. “That’s the only way we understood I would have gotten it,” she says.
What to Expect: Feelings of Anxiety or Relief—or Both!
Feikls remembers an overwhelming sense of fear and uncertainty about what would happen to her like it was just yesterday. “I thought, ‘What if I can’t cure it? What if this causes liver damage?’ I was 19 when diagnosed and worried about whether I would actually be able to heal from this,” she says. Ultimately, she feared that hep C was going to change the rest of her life.
For some people, a hep C diagnosis can be a huge relief. Getting any diagnosis that explains what’s causing health issues can be revelatory. “Finding an answer after searching for so long was huge,” Feikls says.
The bottom line: Whatever you feel—angst, confusion, relief—is completely normal. There’s no right or wrong way to react to a hep C diagnosis, and there are people ready to answer your questions and provide the support you need.
What to Expect: Friends and Family May Not Understand—But You Can Educate Them
Hep C is one of those chronic illness that often comes with an unfair stigma attached—which can make anyone feel like an outcast. It didn’t help when people in Feikls’ life started worrying about having her in their homes. (For the record, you can’t catch hepatitis c through casual contact; it needs to be a direct blood-to-blood transmission.)
“I knew my blood was infected with the virus and that people felt a certain way about it, so I almost felt like I had to hide what was going on,” she says. “That was one of the hardest things for me to go through, that early feeling of isolation and knowing that no one really understood what it felt like.”
To help feel less alone, Feikls turned to social media. “Shame only grows if you keep it within you,” she says. That’s why she shared her story on Instagram and talked openly about her diagnosis on her podcast, Let's Thrive.
Feikls made a point to give people the information they needed about what hep C is and what it’s really like living with it. “The only way to educate people is to sometimes put time and energy toward it,” she says. “But you also have to realize when it’s not worth it. There are some people you don’t have to do that for, so try to find that balance of knowing when it feels right and when it feels forced.” Who’s probably not worth the effort? Anyone who passes judgment before even asking one question or trying to understand. And of course, those trolls on social.
What to Expect: Treatment Probably Won’t Be as Bad as You Think
Direct-acting antivirals (DAA) are the go-to treatments for HCV these days. The best thing about them, especially compared to older treatment options, is that side effects are minimal. This came as a big surprise to Feikls, who had watched her mom struggle through chemotherapy-like treatment many years before. That experience was also very similar to what Dang went through in 1999.
“I went into it with this warrior mindset, wondering how I was going to get through it,” she says. “But then at the end of each week, I was just waiting, wondering when something bad was going to happen or when I’d end up bedridden—and it just never came.”
Feikls remembers feeling a little tired, but overall, treatment ended up being “a pleasant surprise and helped calm my fears,” she says.
Nesper was also unexpectedly fine with her treatment experience on a DAA and had no major side effects. However, she did deal with some short-term memory loss, a noted side effect of the drug she was on. “I was expecting something that was going to lay me out, but I was able to take care of my daughter, still work out, and surf,” she says. Just be sure to ask your doctor about any side effects associated with your specific treatment so you’re not caught off guard.
Older treatments, like interferon and ribavirin, are typically not prescribed anymore. As Dang experienced, the side effects can be pretty severe. While DAAs may cause some side effects, they are not severe enough to interfere with daily life."
What to Expect: You Might Not Trust That Treatment Worked
Questioning the efficacy of your treatment is very common. Feikls wasn’t convinced until she saw three different blood tests come back negative. Even still, she says she experiences uncertainty about the virus being completely gone or becoming re-infected (you don’t become immune to hep C after you’ve been cured).
Regular liver screenings, which you could have as often as twice a year if you have any liver damage, can also trigger feelings of anxiety. “I was always waiting for the other shoe to drop, always getting so anxious it was going to come back before testing every year,” Dang recalls. This was partly because her hep C treatment was pretty new at the time she had it, so there wasn’t a lot of data on how people would respond and how long results would last. “I just remember feeling uncertain and not having faith that I’d be okay in life.” While it can be tough to trust that a treatment will work if before you see it with your own eyes, DAAs have been used for some time now and have a cure rate of over 90%.
Again, whatever you feel is valid, and you are not alone. If you want to connect with people who can relate in real life, The American Liver Foundation has support groups all around the country, and The National Hotline for Help and Support for Hep C (877-HELP-4-HEP) can refer you to support groups near you.
What to Expect: You’ll Gain Some New Perspective
Dang’s hep C journey, from diagnosis to cured, gave her a newfound appreciation for her life and health. “The experience made me realize that you never know what’s going to happen, and I might as well enjoy life as much as I can,” she says.
After she finished treatment, Dang went back to school and decided to train for her first marathon. “I wanted to do something to prove my body wasn’t broken. It was a really big accomplishment for me,” she says. Her experience also inspired a career change: At 30, Dang quit her corporate job to start her own company, Cook Smarts, a meal-planning service that’s meant to help people improve their health by learning how to cook more at home.
Feikls’ hep C diagnosis also resulted in a new lease on life. “I thought, ‘The heck with this, I'm doing what makes me happy,’” she says. “It made me prioritize things, analyze my relationships, and taught me to really appreciate what a ‘normal’ life can be like and how great that feels.”
What to Expect: It May Take Time to Find Your Footing Again
Life may feel a bit surreal after spending so much time focused on healing and processing the emotions of your diagnosis, Feikls says. “Suddenly you’re healthy and good to go. But there’s still a lot of emotional and mental healing that has to take place.”
After completing treatment in late November 2019, Feikls had her final test to confirm she was virus-free in February 2020. She’s left asking herself: What now?
“All of a sudden, you get test results and boom! Life is supposed to be back to normal. But you still have this in your past, and there’s still a little uncertainty about [your health],” Feikls says. It’s more than okay to take some time to process not only your diagnosis, but also the end of treatment. It’s all an important part of your story.