You have hepatitis C, a disease caused by a virus that’s contagious and attacks the liver. Maybe you know how you got it. Maybe you don’t.
Whatever the case, the virus could be just part of the problem. Now that the doctor has told you that you have hep C, get ready to battle a range of head-spinning emotions that often can be as difficult to deal with as the virus itself.
There are ways to calm your nerves and ease your mind.
Fear and anxiety: Most people with hepatitis C don’t have any symptoms. Even if you’ve had it for years, you may not have the fever, fatigue, nausea, vomiting, and other things that some folks with the virus have.
Still, doctors will tell you that hepatitis C is a serious disease that can cause lasting damage to the liver, including cancer and a scarring of the liver (cirrhosis). Hepatitis C is, in a word, scary.
“I think fear is probably the first thing: ‘What does it mean?’ ” says Lucinda K. Porter, RN, author of two books about her experience with hep C.
“If you don’t know anything about hepatitis C, and you go on the Internet — which a lot of people seem to go to before they go to their physicians — you might see a full variety of outcomes, including death. Or see that this is an infectious disease and get the fear you might infect someone else. That’s a huge fear.”
The fears keep coming:
“Once you learn more, you find out that hep C doesn’t work like that,” says Porter, who works as a hepatitis C advocate, writing for hepmag.com and hcvadvocate.org. “If you find out about it in an early stage and get some good, solid information, you find out that those fears don’t usually get realized.”
Remember: In many cases, the medicines that your doctor prescribes can pretty much wipe the virus out of your body.
“There is nothing to be afraid of. No matter how you got the infection, now we have a group of different, good therapies that can get rid of this infection,” says Victor Machicao, MD, a gastroenterologist with McGovern Medical School at UTHealth-Houston.
“I usually tell [people] there’s a good chance that, you start taking the treatments, you’re going to start feeling better, and by the time that we complete the therapy, you’re going to feel almost like a new person.”
Embarrassment and shame: Hepatitis C gets spread through exposure to an infected person’s blood. That’s the only way. Often, that’s how intravenous drug users, sharing needles, spread the virus. Sometimes, it gets passed down through high-risk sex. Before 1992, when blood wasn’t screened for hepatitis C in the U.S., it often was passed along through transfusions and organ transplants, too.
Some of those activities — drug use and high-risk sex, especially — are what many people associate with hepatitis C. That thinking creates a stigma that makes people who have the disease not want to tell others about it.
“So many of [the people I treat] are those baby boomers who did have a brief period of experimentation with drug use. Or maybe they did use drugs for a year or two of their adolescence. But now, that’s like 30 years ago,” says Andrew Muir, MD, a hepatologist who is chief of the Division of Gastroenterology at Duke Clinical Research Institute in Durham, NC.
“Often, they’re not married to somebody that they knew back then … it’s embarrassing, then you’re worried about what that person is going to think of you, and then when you realize that there may be a chance that you’ve passed on the virus through sex. … All these things are spiraling around in their heads.”
Guilt: “There’s a lot of guilt, especially in someone who has a remote history of IV drug use, or got a tattoo at an unregulated parlor, or had a high-risk sexual encounter,” says Nancy Reau, MD, section chief of hepatology at Rush University Medical Center in Chicago.
People feel guilty about the possibility that they’ve infected others unknowingly. They feel guilty about putting loved ones in a situation that is often financially and emotionally costly. Sometimes, it can be too much for a person to handle.
Regret: People with the disease often beat themselves up for not making better choices when they contracted the virus.
“At that point, I tell every single one of my [folks] that there’s not a single one of us that wouldn’t go back and change a decision that we’ve made,” Reau says. “To some extent, looking back isn’t going to help us. We have to look forward.”
Anger: “Anger is not an uncommon one. Anger is one of those emotions that make us feel like we’re empowered,” says Porter, who got hepatitis C in 1988 through a blood transfusion.
For some, it comes from the fact that they had nothing to do with what gave them the virus.
“I didn’t react with anger because in my case, that blood transfusion saved my life. But other people … can feel quite angry, and they feel quite victimized by that. I find [this] one is probably the hardest to address. Sometimes I just acknowledge that they feel angry.”
Depression: The virus, the symptoms that may accompany it, all the emotions — it can be difficult to handle.
Muir says a common scenario, in his experience, is a drug user who addresses the problem of addiction, goes in for treatment, and just as things start looking better, finds out they have hepatitis C.
“I find a lot of them are really down on themselves: ‘I’m a bad person, I did this, I’m being punished for it.’ We really need to try to change the way they feel about that,” Muir says.
“I was a mess. I felt dirty. I was hard on myself,” says Stella Armstrong, a Las Vegas office manager who got the virus through drug use. Armstrong is now virus-free and is a hepatitis C advocate and member of the National Patient Advisory Committee for the American Liver Foundation. “I had to seek counseling. I had to see a psychiatrist. I was taking depression and anxiety medicine.”
Talk to your medical team. Meet with your doctor and anyone else you might need (a hepatologist or pharmacist, for example). Get a plan. Follow treatment.
“You start there. Always,” Porter says.
Don’t underestimate the power of feeling physically better. It’s good for your mind, too.
Once again, the virus can disappear in many of those who have hepatitis C.
“People are surprised. They ask you, ‘Doctor, did you mean ‘cure’?” Machicao says. “They come to the office and say, ‘Doctor, that means I don’t have the infection anymore?’ I tell them, ‘For practical purposes, you’re cured.’ They are in total disbelief. It is amazing.”
“The success of being cured of hepatitis C is really powerful,” says Muir.
If you feel depression or anxiety, the National Institute of Mental Health suggests that you talk to your primary doctor or go to a psychologist or psychiatrist. Depression is a real illness and, even in the most severe cases, it’s treatable with medication or other means.
Get educated. Find trusted sites online. Ask your doctor questions. Know what the virus is all about. Separate fact from fiction.
“Education is how we start breaking down the stereotypes. How we find out we don’t need to be afraid anymore,” Porter says. “It can release the chains of anger.”
Find some support. It can help to talk with other people who have been through what you have. Your doctor can point you toward online groups filled with people who are going through the same process. In some places, you can meet with people in person. Social services through government agencies or hospitals can help, too.
“When you start to see other people who have a history of drug use, that regret and shame starts to diminish. ‘OK. I’m not a bad person. I can deal with this,’ ” Porter says.
“I’ve always been open and have discussed my addiction with drugs. I think it’s the best thing. We only stay as sick as our secrets,” Armstrong says. “It was better for me to share my story. It’s still the same thing. It’s still hepatitis C, and we have to get through it.”
Lean on family, friends, clergy, whomever it takes. Whether it’s someone else who has been through hepatitis C, or a spouse, a parent, a sibling, or your best friend — even if it’s a complete stranger — sometimes you just need a shoulder or a sympathetic ear. Search them out. Use them.
“No matter how much positive you can hear about it, you still have to go home, you still have to be at a point by yourself, thinking these bad thoughts and you’re worried and you’re scared and you’re scared of the unknown,” Armstrong says. “Those are the times you have to call somebody and talk to them.”
Take care of yourself. Once you get your medical plan in place, once you have your support in line, once you’re educated and know what you’re facing, taking a little “me” time is in order.
“Having a chronic illness is hard,” Reau says. “Start by looking at the things you can change easily.”
Eat well. Exercise. Get your sleep. Some people like to meditate. Nap if you need to nap. Make sure you’re around people you like. Enjoy a good book or a movie. All these can help you deal with the stress and emotions of hepatitis C.
“Even at my lowest point and when I was feeling really sick, you just gotta keep moving. You have no other choice,” Armstrong says. “You have to keep moving forward and treating yourself well.”
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