Social and emotional support can make a big difference in your hepatitis C journey. A good support system can increase your well-being and help you stay healthy.
With hep C, you might be wondering what happens 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 tremendously needed,” says Dan Palmer, a 59-year-old singer/songwriter and video producer from 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 informed that he was cured.
“Hep C is still very stigmatized. People may believe that you are a drug user and that drug use is the source of your infection. That makes it difficult to talk about,” says Palmer.
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.
Close friends and trusted family members can help you cope with living with Hep C.
“Family and friends can help you find the right treatment,” says Mindie Nguyen, MD, a hepatologist at Stanford University Medical Center in California. They can also help you stay on track with your medication and treatment.
You can share your feelings and concerns with family and friends. They can help with practical things like housework, work-life balance or financial matters. If you’re struggling with substance abuse or mental health problems, a family member or close friend can help you find treatment and support you along the way.
“Deciding who you share this aspect of your life with is an important one,” says Warren Hall, the American Liver Foundation’s national support services manager. It might be best to limit it to people you trust to understand and support you. “Not everyone needs to know everything about us, and that goes for health issues too,” says Hall.
Your medical team is part of your support system. Your GP, specialists, nurses, pharmacist, and other healthcare 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. In between visits, reach out to us with any questions or concerns you may have.
To get the most support from your healthcare team, be open and honest. “There’s nothing to be gained by withholding information from your doctor,” Hall says. Tests and exams only tell part of the story. “Doctors rely heavily on their patients’ openness about their health,” he says.
If you don’t feel comfortable speaking openly with your doctor, it may be time to find a new one.
Learning more about Hep C will help you understand and deal with it better. But make sure to stick with reliable sources.
Web pages. “We tell people that sites that end in .gov, .org, or .edu are generally best,” says Hall. Try the CDC (cdc.gov) and the National Institutes of Health (nih.gov).
“A very reliable source with a lot of great online information and a toll-free number is the American Liver Foundation or ALF (liverfoundation.org),” adds Palmer.
Hep-C organizations. Many hep C organizations have a variety of support resources available online and over the phone.
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.
Many people with Hep C find emotional support through online communities and support groups.
“Associating with other people with hepatitis C can make you feel less alone,” says Barnett, who has worked with people with hepatitis C for 20 years.
Palmer says attending personal support groups has been very helpful throughout his journey. Conversations with other group members have given him a variety of insights that he would not have had without the group.
To find a support group or community, contact the ALF or HCMSG. “The ALF maintains an online support forum and has links to personal support groups in most states,” says Barnett. “HCMSG provides resources and services such as personal 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,” says Palmer. Because questions, answers, and discussions are only seen by group members, people tend to share 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 share as openly as possible. If you’re embarrassed or worried, remember that the people in your support community aren’t there to judge you. They are there to share experiences and offer advice to help you live better.
If you experience anxiety, depression, or a loss of interest in things that you used to enjoy, it may be a good idea to seek professional help. Try speaking to a professional counselor or therapist. Seeking professional help is not a sign of weakness, Hall says. It’s a sign of strength.