Hepatitis C (hep C) is a liver infection caused by a bloodborne virus called the hep C virus, or HCV. It can be acute (short-term) or chronic (long-term) illness.

According to the World Health Organization (WHO), about 30% of those who contract the hep C virus recover from it without any treatment, but the rest go on to develop chronic hepatitis C viral infection. A chronic infection can lead to serious complications such as cirrhosis and liver cancer. About 95% of people treated with direct-acting antiviral agents are cured of hepatitis C infection.

Despite these treatment advancements, many people still face barriers to testing and healthcare, including costs, a lack of information, and the stigma surrounding the illness.

We interviewed five individuals who’ve lived with hep C and, in some cases, treated for it. They hail from different backgrounds, experiences, and states across the country.

We asked them to share what they wish they would have known before being diagnosed and how people can better support those living with hep C, among other topics.

These are their stories.

Editor’s note: These interviews have been edited for length and clarity.

Lexi Gibson: I wish I [had been] more educated about it. I was young so I didn’t know much about it. When I heard the news, I thought it was going to kill me. I wish there was more education about these things without fear and shame.

I found out when I was at a therapeutic boarding school in Utah. I was getting my HIV checked, and the doctor mentioned it. I just know that my liver had a very hard time processing things. I couldn’t drink alcohol, just one drink messed me up, and I [couldn’t process] meat.

Kasey Jones: I wish I would have known not to freak out. With the diagnosis came bouts of depression and anxiety. I had a husband and three kids. I had a fear that I had passed it to them. Everyone is fine.

I wish someone would have held my hand to explain to me what I needed. I wish I would have been more open to ask more questions. I had used IV drugs. I needed comfort. I didn’t want to be stereotyped or judged so I wasn’t in a safe space to ask the questions. I needed a full complete mental and physical exam/overview [after getting sober].

I had no symptoms except severe constipation. I had been clean for 3 years before being diagnosed.

“I wish I had known how serious it is and how it affects your overall health. Simply, I wish I had been diagnosed sooner.” — Jeffrey Rettig

Brittney Mettke Powers: I wish I would have had it treated back when I was first diagnosed.

The first time I learned there was a treatment, I had just gotten pregnant, and back then, the only available treatment was interferon. I kept putting it off. Then, I had more children. [Editor’s note: None of Brittney’s children have hepatitis C.]

I didn’t have any health issues for years until April of 2022. I went to the emergency room not feeling well and had to be admitted for a week. I had to get several blood transfusions and iron treatments. Because of the damage from hep C, my liver wasn’t filtering anything. I was very close to cirrhosis. I learned that you can go a long time without treatment and not necessarily feel any symptoms, but the virus will affect your body.

If I had waited any longer, I could have ended up very, very sick. I would have treated it regardless of not having any major symptoms. I wish I would have known how important your liver is. It can affect so much more than you think. And I could have avoided that scary incident.

Jeffrey Rettig: I wish I had known how serious it is and how it affects your overall health. Simply, I wish I had been diagnosed sooner.

I thought the symptoms I was having — mainly, fatigue and brain fog — were because of age. But after I got treated, I had more energy. I haven’t been tested since I got treatment, so I don’t know if I’m officially cured yet. Through Help-4-Hep, I’ve been able to get blood tests and treatment. When I first found out, I learned that treatment was $98K, so I reached out for help.

I tried to give blood back when I was around 19, 20 years old, and they told me that [I couldn’t] give blood anymore because [I] might have hepatitis C. But they also told me that some people just naturally heal from it. Plus, I wasn’t having any symptoms at that time.

I did get a tattoo about a year before, at age 18. I had had quite a time with it. The skin around the area swelled up. But when I heard that some people cleared the virus plus the fact that there weren’t any real treatments at the time, I moved on.

Later, I developed a skin problem that turned out to be psoriasis. My doctors wanted to prescribe a medication, but I had to have liver monitoring to take it. That’s when they tested me, and I found out I had hepatitis C.

Thankfully, I have no signs of liver cancer or cirrhosis. I don’t drink and never did any drugs, so I think that may have helped me.

Rosalie Rose: I suppose that there should be more information about hep C. There is still a lot of stigma and misunderstanding attached to hep C. Most people assume that you contract hep C either because of intravenous drug use or homosexual relationships.

Neither applied to my case, and I still get the funny looks when I explain my condition to someone. Also, had I known that there were other ways of contracting hep C, I might have asked to be tested when I started feeling ill. Instead, I simply did not think this applied to me, and I was practically shocked when my [doctor] suggested I be tested 7 years ago. I would not be where I am had there been more public and accurate information about hep C.

“Being in the recovery community is a lot different, it’s very common … After I made it through recovery, I was back out in the rest of the world with people who weren’t so understanding.” — Brittney Mettke Powers

Gibson: I was never scared to say I had hep C, only HIV, because it’s widely ridiculed and shamed. But in general, it’s not something people need to be scared of. I’m not an infectious person. It’s not something you can easily spread. No matter how anyone contracts it, it doesn’t make a statement about who you are as a person.

There’s something really weird about people’s reactions to STIs and bloodborne illnesses. You’re literally having sex with someone, you’re sharing fluids. I think it’s a religious thing — they think God is punishing people who sleep around. Or, if someone cheats on you and you get something, it’s deserved. The truth is that it’s not your fault.

Jones: It’s not a death sentence. It doesn’t mean, “Kasey, you have hep C, you’re going to die.” It means you need to get healthy and here are some treatment plans that may work for you. It is a curable disease. The first time I heard about it, I went, “Ew,” and then I got it. Education. It’s now a curable disease, but many people don’t know.

From my understanding, getting tested for HIV has become more standard now, whereas hep C you have to request.

A note on hepatitis C screening

According to the Centers for Disease Control (CDC), adults should be screened for hepatitis C at least once in their lifetime.

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Mettke Powers: My experience is that some people are over-stigmatizing it. I contracted it through drug use. I think there’s immediately a stigma around it. But it can be transmitted through a lot of different means. People need to understand that it’s not that easily transmitted.

Being in the recovery community is a lot different, it’s very common. My husband has hep C. After I made it through recovery, I was back out in the rest of the world with people who weren’t so understanding. I was an IV drug user and knew nothing about hep C. I still made the decision to use needles. I didn’t realize that it would be something I would have to deal with for the rest of my life.

Rettig: How contagious it is. It can be transmitted through a variety of sources. It can be transmitted through sex but other sources as well. People might think, “How did I get this? I’m not a drug addict, I haven’t shared needles or anything like that.”

But it doesn’t necessarily affect you right away. A lot of people don’t know they have it. They don’t have symptoms. Doctors don’t usually offer hepatitis tests in annual physicals or anything like that. You really have to ask for it. You think you’re healthy, you think you’re fine, but you may not be.

Rose: I wish I knew that just about anyone can contract hep C. As my doctor has explained to me on several occasions, there are many ways to become infected. There needs to be better and more widespread information so individuals can be more aware and hopefully get an early diagnosis and be cured before there is serious liver damage or other issues.

It should be part of the curriculum of what’s out there. I’m a victim of no information. The information at the time was if you’re not part of a certain group of people, you don’t need to worry about it.

Gibson: Be supportive and nonjudgmental. Offer love instead of shame. [People should] educate themselves so that they can be a better support to the person in their lives with hep C. We fear what we don’t know so the more everyone is educated, the safer the space we create. Like with HIV — it doesn’t kill people, stigma kills people.

Jones: Keep an open mind. I think being transparent about questions is helpful. Offer that safe space so people can be vulnerable. [People should] educate themselves and take the initiative. Since I work in the field of the addiction, it [educating] is really empowering.

Mettke Powers: Honestly, education. When I think of myself, just knowing — education, awareness, and acceptance. Everyone has different journeys, how they contracted it.

Even for my treatment, my copays are hundreds of dollars. If someone has hep C, they may not be able to afford their treatment. I had to go through a bunch of things with health insurance, getting a bunch of approvals. A person can have a lot of side effects, but don’t just let it go. My mom would be like, “Why aren’t you starting treatment?” Be supportive, listen, and be educated.

In the recovery community, it’s very accepted to get tested for various STIs or diseases that can be transmitted through blood and needles. For any kind of recovery, they encourage you to get tested for everything.

Rettig: I think there’s a stigma surrounding this disease. If you mention it, there are people who look down on people. They think, “You’re a drug addict, you were doing things you weren’t supposed to be doing.” You’re some kind of dirty person.

People should do better to educate themselves. I was asked all kinds of questions about drugs by healthcare professionals. And they did a lot of drug tests while I was being treated to make sure I wasn’t taking anything.

It would also be helpful to have more financial support for treatment. I know there are generic medications now to help, but still. Also, sometimes health insurance makes you wait until you’re super sick to get treatment.

I wish there were more local support groups taking place in person. I know there are a lot of online groups, but I’m not on the internet that much. I’m sure a lot of people struggle with it. It’s hard to deal with when you first find out. You wonder, am I going to die?

Rose: I found once again that the lack of information around hep C causes people to have little or no understanding of the condition. In cases like mine, there are some adjustments to be made, lifestyle changes, scary moments, and constant testing.

I have been cured of hep C, but because of liver damage, I have to undergo testing every 6 months. It’s routine but it still is an emotional roller coaster. Like with many other conditions, if there was more information, I think we could be better supported by friends and family.

Things are shifting a little bit on alcohol in the culture but not enough. Also, “mocktails” are too sweet. They contain too much sugar. The nonalcoholic wines have very little sugar versus the mocktails.

Gibson: My biggest advocate was my adopted mom, Shannon Wentworth. She kept me alive. She knew a lot about HIV. She used to do HIV [bicycle] rides from San Francisco to LA. Her ex-wife’s brother died from AIDS. She was a 34-year-old lesbian who decided to take me in. She’s a lawyer now and fights for people wrongly convicted.

Jones: During treatment for hep C, it was more women who had been through hep C treatment. I had a best friend who also went through it. She held my hand through the whole thing. I also have my recovery support groups, family, etc. She understood exactly where I was. Now that I’m through treatment, it’s the same people, plus strangers on the internet. I have not had anyone be like, that’s weird! My biggest critic is probably me.

Mettke Powers: My mom. She would never let me forget that I have hep C, being a mom and a nurse. She gave me the push to get help and get treated. My husband is also really supportive and has lived with me during treatment. My first recovery sponsor had it, and she actually went through the interferon treatment years ago. She helped me realize I needed to get treated.

When you first get clean, you’re trying to figure out so many things, getting treatment for hep C can be pushed to the back burner. You have to figure out housing, deal with legal issues, you may not have health insurance, etc. If they’re not feeling sick from the virus, it’s easy to push to the side to deal with the bigger, more pressing issues. Plus, health insurance requires you to go through so many hoops.

Rettig: Betsy from Help-4-Hep. I haven’t told anyone because of the stigma. If I told people in my life, they would be shocked. Betsy and I have talked a lot. I told her things I never told anyone. I wish I could have her as a friend, close by, but she lives far away. She was really considerate and caring. She understood what it was like.

Rose: My dearest friends, my sons, my closest family. Specifically during treatment, I think it was my doctor (my specialist) who helped me stay calm and hopeful. At first, it was challenging to find a healthcare professional who specialized in the treatment of hep C. Once I located my current doctor, I immediately felt “safe.” He has been a wonderful support and will continue to be as I continue to navigate the “aftermath” in the years ahead.

Headaches were the most significant part of the treatment, but I just increased my intake of water. And I can’t take painkillers because of the residual effects of hep C.

Gibson: When I got to my therapeutic boarding school, the biggest thing that changed my life was changing my self-talk, becoming my own best friend. I stopped holding myself to a double standard. Any time I spoke negatively about myself, I would ask, “Would I say this to someone I loved?” How I talk to myself is everything.

I’m also super into yoga, I’m a yoga teacher and am certified in breathwork. Movement, nature, and nourishing my body (I’m now a vegan) are all part of my self-care.

Jones: Something that’s remained prevalent both then and now is exercise. Working out and moving my body in some way has always been encouraged.

During treatment, I didn’t have any side effects so I kept working out the same way. My body was getting healthy and happy again, so I instantly felt better. Exercise has changed my whole life. It gives me that happy feeling.

I run, I go to the gym four to five times a week. I go to my self-care “face lady.” I have a lot of scars from being in recovery, so I’ve gotten some touch-ups done.

Mettke Powers: It was a really big wake-up call to practice self-care when I was hospitalized.

This year is going to be about focusing on self-care. I would say making sure you’re going to your doctor appointments is self-care. At least go to your yearly check-ups. It might sound like an easy thing, but a lot of people forget or just let it pass.

I also like to read, listen to music, and get my hair blown out. I used to focus more only on mental health care, not physical healthcare, but they affect one another. It can be a lot as a mom, too, having to schedule your kids’ appointments and take care of their health. But it’s like the cliché about putting on your own oxygen mask first before taking care of your fellow passenger.

Depending on your financial status, do whatever you can to stay healthy. Get your bloodwork done, get your labs. Now I have a primary care physician and specialists for everything. I didn’t have anyone I could count on before, but now I have tons of doctors and healthcare professionals to go to so I can take care of myself.

Rettig: Talking with Betsy was a huge help, but I’ve never talked to any friends or family. I just kept it quiet. I stay busy a lot. I restore antique cars on the side and I deliver parts in the daytime. I’m working on a Pontiac car right now. I do a lot of work on other people’s older cars. I’ve also built guitars, and I play a little music.

Rose: I try to get as much rest as possible, eat healthy, fresh food, lots of water, and keep a positive attitude. I do my best to spend time doing things I love and enjoy every day as much as possible. The water really helps to flush out my organs, which is extremely important. I also try to reduce stress in my life.