You have hepatitis C, a disease caused by a contagious virus that attacks the liver. Maybe you know how you came up with that. Maybe not.
However, the virus could be only part of the problem. Now that the doctor has told you that you have Hep C, get ready to battle a series of dizzying emotions that are often just as difficult to deal with as the virus itself.
There are ways to calm your nerves and calm your mind.
fear and worry: Most people with hepatitis C have no symptoms. Even if you’ve had it for years, you may not have the fever, fatigue, nausea, vomiting, and other things that some people with the virus have.
However, doctors will tell you that hepatitis C is a serious disease that can cause permanent damage to the liver, including cancer and scarring of the liver (cirrhosis). In a word, hepatitis C is scary.
“I think fear is probably the first thing, ‘What does it mean?’ says Lucinda K. Porter, RN, author of two books about her experiences with Hep C.
“If you don’t know about hepatitis C and you go online – which a lot of people seem to check before going to their doctor – you may see a whole host of consequences, including death. Or see that this is a contagious disease and get scared you might infect someone else. That is a great fear.”
The fears keep coming:
“As you learn more, you find out that’s not how Hep C works,” says Porter, who works as a hepatitis C advocate and writes for hepmag.com and hcvadvocate.org. “When you find out about it early and you get good, solid information, you find that those fears don’t usually come true.”
Remember: In many cases, the medications your doctor prescribes can all but remove the virus from your body.
“There is nothing to fear. No matter how you got the infection, now we have a group of different good therapies that can clear that infection,” said Victor Machicao, MD, a gastroenterologist at McGovern Medical School at UTHealth-Houston.
“I usually tell [people] There’s a good chance you’ll feel better once you start the treatments, and by the time we complete the therapy you’ll feel almost like a new person.”
embarrassment and shame: Hepatitis C is spread through contact with the blood of an infected person. This is the only way. Injecting drug users who share needles often spread the virus this way. Sometimes it is passed through high-risk sex. Before 1992, when blood was not tested for hepatitis C in the United States, it was often passed through transfusions and organ transplants as well.
Some of these activities — particularly drug use and risky sex — are what many people associate with hepatitis C. This thinking creates a stigma that discourages people with the condition from telling others about it.
“So many of [the people I treat] are the baby boomers who had a brief period of experimentation with drug use. Or maybe they did drugs for a year or two when they were young. But now, it’s like 30 years ago,” says Dr. Andrew Muir, a hepatologist and chief of the Division of Gastroenterology at the Duke Clinical Research Institute in Durham, NC.
“Often they aren’t married to anyone they knew at the time … it’s embarrassing, then you worry about what that person is going to think of you, and then when you realize there might be a chance you have.” transmitted the virus through sex. … All these things are buzzing around in their heads.”
fault: “There’s a lot of guilt, especially in someone who has a distant history of IV drug use, or got a tattoo at an unregulated salon, or had a high-risk sexual encounter,” says Nancy Reau, MD, chief of the Hepatology Division Rush University Medical Center in Chicago.
People feel guilty about the possibility that they unknowingly infected others. They feel guilty for putting loved ones in a situation that is often financially and emotionally costly. Sometimes it can be too much for one person to handle.
regret: People with the disease often beat themselves up for not making better choices when contracting the virus.
“At this point, I tell each and every one of mine [folks] that there isn’t a single one of us who wouldn’t go back and change a decision we’ve made,” says Reau. “To a certain extent, looking back won’t help us. We have to look ahead.”
Fury: “Anger is not uncommon. Anger is one of those emotions that makes us feel empowered,” says Porter, who contracted hepatitis C through a blood transfusion in 1988.
For some, it’s because they had nothing to do with what brought them the virus.
“I didn’t react with anger because in my case that blood transfusion saved my life. But other people…can be quite angry, and they feel quite bullied by it. I find [this] One of these is probably the most difficult to address. Sometimes I just acknowledge that they are angry.”
Depression: The virus, the symptoms it brings, all the emotions – it can be difficult to deal with.
Muir says a common scenario, in his experience, is a drug user who addresses the problem of the addiction, seeks treatment, and just when things are looking better finds out he has hepatitis C.
“I find a lot of them are very depressed: ‘I’m a bad person, I did this, I’ll be punished for it.’ We really need to try to change their mindset about it,” Muir says.
“I was a mess. I felt dirty. I was hard on myself,” says Stella Armstrong, a Las Vegas office manager who caught the virus through drug use. Now virus-free, Armstrong is an advocate for hepatitis C and a member of the American Liver Foundation’s National Patient Advisory Committee. “I needed advice. I had to see a psychiatrist. I took medication for depression and anxiety.”
Talk to your medical team. Meet with your doctor and others you may need (such as a hepatologist or pharmacist). Get a plan. Follow the treatment.
“There you start. Always,” says Porter.
Don’t underestimate the power of feeling better physically. It’s also good for your psyche.
Again, the virus can disappear in many hepatitis C patients.
“People are surprised. They ask you, “Doctor, did you mean? ‘Cure‘?” says Machicao. “They come into the office and say, ‘Doctor, that means I’m no longer infected?’ I tell them: ‘For practical reasons you are healed.’ They are completely incredulous. It’s amazing.”
“The success of being cured of hepatitis C is really impressive,” says Muir.
If you’re experiencing depression or anxiety, the National Institutes of Mental Health recommends that you speak to your family doctor or see a psychologist or psychiatrist. Depression is a real illness and even in the most severe cases, it is treatable with drugs or other means.
get formed Look for trusted websites online. Ask your doctor questions. Knowing what the virus is all about. Separate fact from fiction.
“Education is how we start breaking down the stereotypes. As we find out, we don’t need to be afraid anymore,” says Porter. “It can loosen the chains of anger.”
Find support. It can be helpful to talk to other people who have been through what you have been through. Your doctor can point you to online groups filled with people going through the same process. In some places you can meet people in person. Social services from authorities or hospitals can also help.
“When you start seeing other people who have used drugs in the past, that regret and shame goes away. ‘OK. I’m not a bad person. I can handle that,’” says Porter.
“I’ve always been open and talked to drugs about my addiction. I think it’s for the best. We only stay as sick as our secrets,” says Armstrong. “It was better for me to share my story. It’s still the same. It’s still hepatitis C and we have to go through it.”
Rely on family, friends, ministers, whoever it takes. Whether it’s someone else who’s been through with hepatitis C, or a spouse, parent, sibling, or your best friend — even if it’s a complete stranger — sometimes all you need is a shoulder or a listening ear. Pick 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 alone at some point, think those bad thoughts and you’re worried and you’re scared and you’re scared of the unknown,” says Armstrong. “Those are the times you need to call someone and talk to them.”
take care. Once you have your medical plan in place, once you have your support lined up, once you are informed and know what to expect, it is appropriate to take a little “me” time.
“Having a chronic illness is tough,” says Reau. “First, look at the things you can easily change.”
eat well Exercise. Get your sleep. Some people like to meditate. Take a nap when you need to take a nap. Make sure you are around people you like. Enjoy a good book or a movie. All of 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. They have no choice,” says Armstrong. “You have to move on and treat yourself well.”