Social and emotional support can make a big difference in your hepatitis C journey. A good support system may enhance your health and help you stay healthy.
Why support is important with hepatitis C
With hepatitis C, you may wonder what will happen next. You may worry about how this will affect your health. You may feel isolated and unsure of who to talk to.
“Emotional support is absolutely essential,” says Dan Palmer, a 59-year-old singer, songwriter, and video producer in Carson City, Nevada, who was diagnosed with hepatitis C in his late 30s. After developing liver disease from hepatitis C, Palmer underwent a liver transplant. In 2016, he was told he was cured.
“There is still a lot of stigma around hepatitis C. People may think that you are a drug abuser and that drug use is the source of the infection. This makes it difficult to talk about it,” Palmer says.
Finding the right support can help you find answers to your questions, reduce loneliness, and take better care of your health.
You can build a support network with your friends, family, doctors, medical team and the hepatitis C community.
family and friends
Close friends and trusted family members may help you manage life with hepatitis C.
“Family and friends can help you navigate through the process of finding the right care,” says Mindy Nguyen, MD, a hepatologist at Stanford University Medical Center in California. They can also help you stay on track with your medications and treatment.
You can talk with family and friends about your feelings and concerns. They may help with practical things such as household chores, work-life balance, or financial issues. If you have substance abuse or mental health issues, a close family member or friend may help you find treatment and support you along the way.
“It’s important to choose who you share this aspect of your life with,” says Warren Hall, national director of support services at the American Liver Foundation. It may be best to limit it to people who you trust will understand and support you. “Not everyone needs to know everything about us, and that’s true when it comes to health issues,” Hall says.
Your doctor and other specialists
Your medical team is part of your support system. Your primary care doctor, specialists, nurses, pharmacist and other health care providers can address your questions and concerns and help you make decisions about your treatment.
Before each visit, write a list of questions to ask your doctor. Between visits, reach out to any questions or concerns you may have.
To get the most support from your health care team, be open and honest. “Nothing is gained by withholding information from your doctor,” Hall says. Quizzes and tests only tell part of the story. “Physicians rely heavily on their patients’ openness about their health,” he says.
If you don’t feel comfortable talking openly with your doctor, it’s time to find a new one.
Reliable information and helplines
Learning more about hepatitis C may help you better understand and manage it. But be sure to stick to reliable sources.
web sites. “We generally tell people that websites ending in .gov, .org, or .edu are best,” Hall says. Try the Centers for Disease Control (cdc.gov) and the National Institutes of Health (nih.gov).
“One very reliable resource that has a lot of great information online, in addition to the toll-free number, is the American Liver Foundation, or ALF (Liverfoundation.org),” adds Palmer.
Hepatitis C regulators. Many liver C organizations have a variety of support resources available both online and over the phone.
- ALF Help Center (1-800-465-4837). ALF can answer your questions about your diagnosis, talk about your concerns, and help you find information, resources and support through their support community.
- Help4Hep (877-HELP-4-HEP). You can find information and support for hep C at this free nonprofit helpline with peer-to-peer advisors. They can help you find doctors, low-cost clinics, support groups, financial assistance, and other resources.
- Hepatitis C Steering and Support Group (HCMSG). “HCMSG was specifically established to address the lack of awareness and support for people with chronic hepatitis C,” says Michelle Barnett, MD, Physician (PA) at Associates Gastroenterology in Colorado Springs, Colorado. Individual counseling for hepatitis C patients
Local health departments. You can also find information, free tests, counseling, and support groups through state and local health departments, Hall says.
“Large urban centers like New York City or Los Angeles will have more resources than small communities. It may take some digging into smaller areas, but the help is there,” he says.
Support groups and online communities
Many people with hepatitis C find emotional support through online communities and support groups.
“Dealing with other people who have hepatitis C can make you feel less alone,” says Barnett, who has worked with hepatitis C patients for 20 years.
Palmer says that attending personal support groups has been very helpful throughout his journey. Talking to the other members of the group gave him a variety of ideas that he would not have had without the group.
To find a support group or community, reach out to ALF or HCMSG. “ALF maintains an online support forum and has links to in-person support groups in most states,” Barnett says. “The HCMSG provides resources and services such as one-on-one guidance for patients with hepatitis C.”
You can also find support groups on social media. “I’m a member of several closed groups on Facebook,” Palmer says. Because questions, answers, and discussions are only seen by group members, people tend to participate freely, he says. The groups have been a constant source of insight, encouragement, and inspiration.
To get the most out of an online community or support group, it’s best to participate as openly as possible. If you feel embarrassed or anxious, remember that the people in the support community are not there to judge you. They are there to share experiences and tips to help you live better.
When do you see the therapist?
If you feel anxious, depressed, or lose interest in things that used to give you pleasure, it may be a good idea to get professional help. Try talking to a professional counselor or therapist. Hall says seeking professional help is not a sign of weakness. It is a sign of strength.