You have hepatitis C, a disease caused by a contagious virus that attacks the liver. You probably know how you got it. Maybe not.
Whatever the case, the virus could be just part of the problem. Now that your doctor has told you that you have hepatitis C, prepare to fight a host of emotions that can often be just as difficult to deal with as the virus itself.
There are ways to calm your nerves and calm your mind.
what are you facing
Fear and anxietyMost people with hepatitis C do not 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 people with the virus experience.
However, doctors will tell you that hepatitis C is a serious disease that can cause permanent liver damage, including cancer and scarring of the liver (cirrhosis). Hepatitis C, in short, is scary.
“I think fear is probably the first thing: ‘What does that mean?'” says Lucinda K. Porter, RN, author of two books about her experience with hepatitis C.
“If you don’t know anything about hepatitis C, and you go online – which many people seem to go to before they go to their doctors – you might see a whole host of results, including death. Or see that this is a contagious disease, And I’m afraid that someone else might get infected. That’s a big fear.”
Concerns keep emerging:
- Will you be exhausted?
- Could it infect someone else?
- Will you be able to work?
- How will you pay for your treatment?
- How will you take care of your family?
- How will you pay the mortgage?
“Once you learn more, you find out that hepatitis C doesn’t work that way,” says Porter, who serves as a hepatitis C advocate, and writes for hepmag.com and hcvadvocate.org. “If you figure this out at an early stage and get some good, solid information, you’ll discover that these fears don’t usually come true.”
Remember: In many cases, the medications your doctor prescribes can largely eliminate the virus from your body.
“There’s nothing to be afraid of. No matter how you catch an infection, we now have a range of different good treatments that can get rid of this infection,” says Victor Macicao, MD, a gastroenterologist at McGovern Medical School in UTHealth-Houston.
“I usually say [people] There’s a good chance you’ll start taking the treatments, you’ll start to feel better, and by the time we finish the treatment, you’ll feel almost like a new person.”
Embarrassment and shameHepatitis C is spread through exposure to the blood of an infected person. This is the only way. Often, this is how intravenous drug users spread, sharing needles. Sometimes, it is transmitted through high-risk sex. Prior to 1992, when blood was not screened for hepatitis C in the United States, it often went through blood transfusions and organ transplants as well.
Some of these activities — substance abuse and high-risk sex, in particular — are what many people associate with hepatitis C. This thinking creates a stigma that makes people with the disease not want to tell others about it.
“a lot of [the people I treat] They are those baby boomers who have had a brief period of experiences with substance abuse. Or they may have used drugs for a year or two into their teens. But now, that was 30 years ago, says Andrew Muir, MD, a hepatologist and chief of gastroenterology at the Duke Clinical Research Institute in Durham, North Carolina.
“A lot of times, they weren’t married to someone they knew at the time… It’s embarrassing, you worry about what that person will think of you, and then when you realize there might be a chance of sexual transmission of the virus. … All of these things are surging in their heads.”
guilt“There’s a lot of guilt, especially in someone who has a distant history of intravenous drug use, or has gotten a tattoo in an unregulated salon, or has had a high-risk sexual encounter,” says Nancy Roe, MD, director of the division of hepatology at Rush University Medical Center in Chicago.
People feel guilty about potentially infecting others without their knowledge. They feel guilty about putting their loved ones in a situation that is often costly both financially and emotionally. Sometimes, it can be too much on a person.
ContritionPeople with the disease often beat themselves up for not making better choices when they contracted the virus.
“At that point, I tell every one of my [folks] “None of us are not going to go back and change a decision we made,” Rowe says. To some extent, looking back will not help us. We have to look forward.”
anger: “Anger is not uncommon. Anger is one of those emotions that makes us feel empowered,” says Porter, who contracted hepatitis C in 1988 through a blood transfusion.
For some, it comes from the fact that they have nothing to do with what infected them with the virus.
“I didn’t react with anger because in my case, a blood transfusion saved my life. But other people… can get very angry, feel like victims of that. I found [this] One of them is probably the most difficult to treat. Sometimes, I just admit they get angry.”
depression: The virus, the symptoms that may accompany it, all the feelings – it can be hard to deal with.
Muir says a common scenario, in his experience, is a drug user who treats addiction, goes to therapy, and when things start to look better, he finds out that he has hepatitis C.
“I find a lot of them really frustrated with themselves: ‘I’m a bad person, I did this, and I get punished for it. “We really need to try to change the way they feel about it,” Muir says.
“I was a mess. I felt dirty. I was tough on myself,” says Stella Armstrong, an office manager in Las Vegas who contracted the virus through drug use. Armstrong is now virus-free and is a hepatitis C advocate and member of the National Advisory Committee Patients to the American Liver Foundation.” “I had to seek advice. I had to see a psychiatrist. I was taking medication for depression and anxiety.”
How do I get help
Talk to your medical team. See your doctor and anyone else you may need (a hepatologist or pharmacist, for example). Get a plan. Follow the treatment.
“You start there. Always,” says Porter.
Don’t underestimate the power of feeling better physically. It’s good for your brain too.
Again, the virus can go away in many people with hepatitis C.
“People are amazed. They ask you, Doctor, did you mean ‘medicine“?” Machikau says. “They come into the office and say, ‘Doctor, does that mean I no longer have the infection? I tell them, “For practical purposes, I’m cured.” They are in complete disbelief. It’s wonderful.
“The success of recovery from hepatitis C is really strong,” Muir says.
If you feel depressed or anxious, the National Institute of Mental Health suggests that you talk to your primary doctor or go see a psychiatrist or psychiatrist. Depression is a real disease and can be treated with medication or other means even in the most serious cases.
Get an education. Find reliable websites online. Ask your doctor questions. Learn what the virus is all about. Fact separate from fiction.
“Education is how we begin to break down stereotypes. How do we discover we don’t need to be afraid anymore,” says Porter. “It can unleash the chains of anger.”
Find some support. Talking to other people who have been through what you have been through can help. Your doctor can direct you to online groups full of people going through the same process. In some places, you can meet people face to face. Social services through government agencies or hospitals can also help.
“When you start seeing other people with a history of drug abuse, that remorse and shame starts to wane. ‘Yeah. I’m not a bad person. I can handle this,'” Porter says.
“I’ve always been open and discussed my drug addiction. I think it’s the best thing. We stay sick like we only have our secrets,” Armstrong says. “I had better share my story. Still the same. It’s still hepatitis C, and we have to get through it.”
Rely on family, friends, clergy, whatever. Whether it’s someone else with hepatitis C, 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 for it. use them.
“No matter how positive you can hear about it, you still have to go home, you still have to be at some point on your own, and you think about those bad thoughts and you worry and you feel scared and you’re afraid. These are the times when you have to,” Armstrong says. Call someone and talk to them.”
take care of yourself. Once you have your medical plan in place, once you have your support in line, and once you learn and know what you’re up against, setting aside a little “me” time is appropriate.
“Having a chronic disease is difficult,” Rowe says. “Start by looking at the things that you can easily change.”
Eat well. Playing sports. Get your sleep. Some people like to meditate. Nap if you need a nap. Make sure you are around the people you love. Enjoy a good book or movie. All of these things 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 have to keep moving. You have no other choice,” Armstrong says. “You have to keep moving forward and treat yourself well.”