Social and emotional support can make a big difference in your journey with hepatitis C. A good support system may boost your well-being and help you stay healthy.
Why Support Is Important With Hep C
With hep C, you may wonder what happens next. You may worry about how it will affect your health. You may feel isolated and unsure who you can talk to.
“Emotional support is hugely necessary,” says Dan Palmer, a 59-year-old singer/songwriter and video producer in Carson City, NV, who was diagnosed with hep C in his late 30s. After developing liver disease from hep C, Palmer had a liver transplant. In 2016, he was told he was cured.
“There’s still a lot of stigma about hep C. People may believe you’re a drug user and that drug use is the source of your infection. That makes it hard to talk about,” Palmer says.
Finding the right support can help you find answers to your questions, feel less alone, and take better care of your health.
You can build a support network with your friends and family, your doctors and medical team, and the hepatitis C community.
Family and Friends
Close friends and trusted family members may help you manage life with hep C.
“Family and friends can help you navigate through the process of finding the right care,” says Mindie 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 may talk to family and friends about your feelings and concerns. They may help with practical things like household chores, work-life balance, or financial issues. If you’re struggling with substance abuse or mental health issues, a family member or close friend may help you find treatment and support you along the way.
“Choosing who to share this aspect of your life with is important,” says Warren Hall, the American Liver Foundation’s national manager of support services. It may be best to limit it to people you trust will understand and support you. “Not everyone needs to know everything about us, and this is true regarding health matters,” Hall says.
Your Doctor and Other Professionals
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 down a list of questions to ask your doctor. Between visits, reach out with 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 holding back information from your doctor,” Hall says. Tests and exams 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 may be time to find a new one.
Reliable Information and Helplines
Learning more about hep C may help you understand and manage it better. But be sure to stick with reliable sources.
Websites. “We tell people that generally, websites that end in ‘.gov,’ ‘.org,’ or ‘.edu’ are best,” Hall says. Try the CDC (cdc.gov) and National Institutes of Health (nih.gov).
“One very dependable source with lots of great information online, plus a toll-free number, is the American Liver Foundation, or the ALF (liverfoundation.org),” Palmer adds.
Hep C organizations. Many hep C organizations have a variety of support resources available online and over the phone.
- ALF Help Center (1-800-465-4837). The 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 nonprofit, toll-free helpline with peer-to-peer counselors. They can help you find doctors, low-cost clinics, support groups, financial help, and other resources.
- Hepatitis C Mentor & Support Group (HCMSG). “The HCMSG was founded specifically to address the lack of awareness and support of people living with chronic hepatitis C,” says Michelle Barnett, a physician assistant (PA) at Associates in Gastroenterology in Colorado Springs, CO. “They provide resources and services including one-on-one mentoring to patients with hepatitis C.”
Local health departments. You can also find information, free testing, counseling, and support groups through your state and local health departments, Hall says.
“Large, urban centers like New York City or Los Angeles will have more resources than smaller communities. It may take some digging in smaller areas, but the help is there,” he says.
Support Groups and Online Communities
Many people with hep C find emotional support through online communities and support groups.
“Interacting with other people with hepatitis C can make you feel less alone,” says Barnett, who has worked with people with hep C for 20 years.
Palmer says attending in-person support groups has been very helpful throughout his journey. Talking to other group members has given him a variety of insights that he wouldn’t have without the group.
To find a support group or community, reach out to the ALF or HCMSG. “The 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 like one-on-one mentoring 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. Since questions, answers, and discussions are only seen by group members, people tend to share freely, he says. The groups have been a steady source of insight, encouragement, and inspiration.
To get the most out of an online community or support group, it’s best to share as openly as you can. If you feel embarrassed or worried, remember that the people in your support community aren’t there to judge you. They’re there to share experiences and advice to help you live better.
When to See a Therapist
If you feel anxiety, depression, or loss of 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. Seeking professional help isn’t a sign of weakness, Hall says. It’s a sign of strength.
Photo Credit: Peter Berglund / Getty Images
Michelle Barnett, PA, Associates in Gastroenterology, Colorado Springs, CO.
Warren Hall, American Liver Foundation, national manager of support services.
Mindie Nguyen, MD, MAS, AGAF, FAASLD, Stanford University Medical Center in California.
Dan Palmer, Carson City, NV.
Gastroenterology Nursing: “The role of hepatitis C support groups.”
American Liver Foundation: “ALF Help Center.”
Help4Hep: “Let’s Talk.”
The Hepatitis Trust: “Telling People.”
Inspire: “American Liver Foundation.”
Lanarkshire BBV Prevention and Care Network: “Living with HIV And/Or Hepatitis.”