A hepatitis C diagnosis often comes with more than just infection. There can be a mental toll, too. When you have it, you may fear what others think of you, or you may deal with negative reactions to your diagnosis. This stress can lead to mental health issues. In fact, one-third of people with hepatitis C have depression.
But there’s hope. You can manage and even cure hepatitis C with today’s treatment options. And alongside these treatments, you can find support that will improve your mental stress.
Understanding the Stigma
Like many health conditions, hepatitis C isn’t well-understood by the public, which leads to stereotyping and assumption.
“There are times when hep C is more prevalent in the news because of a problem like the opioid crisis, and as a result, when the average person hears someone has hep C, they automatically think, ‘Oh, that’s a substance abuser,’” says Wendy Tayer, PhD, a UC San Diego Health clinical psychologist who specializes in chronic illness treatment.
Though the main way people get hepatitis C is through sharing needles during illegal drug use, there are many other ways to get it, too. These include blood transfusions, organ transplants, tattoos or piercings with an infected tool, or exposure in a health care setting.
Even if others know how you got your infection, another common reaction is fear that they’ll catch it from you. When retired nurse Laurie Smith, 73, contracted hepatitis C as a result of an accidental needle stick at work, some members of her family kept their distance.
“I was asked not to eat off of plates or drink out of glasses at some family gatherings” she says. “Even 6 months after I was cleared of the infection, certain family members were still wary of me.”
But hepatitis C isn’t like a cold or the flu. You won’t get it just from being around someone who has it, or from drinking and eating after them. You can only get it if infected blood enters your bloodstream. Even having sex with someone who has hepatitis C comes with a very low risk of infection.
Advocating for Yourself
Who you talk to about your infection is up to you. But when you do decide to have a conversation, it’s a good idea to have your facts straight.
“I’m a big proponent of having the patient become an advocate and an expert in their own condition and then educating their support system about the condition,” says Tayer.
Some of the information you can have at the ready:
- Hep C is curable.
- It often doesn’t cause any symptoms.
- The risk of passing it on to others is very low.
Even with facts, you can’t control others’ reactions. Part of safeguarding your mental health is learning to focus on yourself and understanding that’s the only person you can change.
“Most of my family was very understanding, but others really had a problem with it,” says Smith. “Even after showing my paperwork that said I was cured, it took a good 6 months for some of them to come around to me.”
Studies show the anger, depression, and anxiety that often come with a hep C diagnosis are often a barrier to reaching out to others for support. But caring for your mental health isn’t just important emotionally; it can also make a difference in your treatment outcome.
“People who have a good support system in place are much more likely to comply with the full treatment regimen,” says Tayer.
Some ways to boost your mental wellness include:
- Connect to others with hep C. Hep C isn’t rare. You can join online and in-person groups to talk about life with hep C. “There are people with hep C who have developed organizations and websites to share resources and ask for advice, such as Life Beyond Hep C, I Help C, and The Mighty, which is a health care consortium of like-minded people dealing with health challenges,” says Tayer.
- Consider counseling. Regular sessions with a trained therapist will give you tools to use when you’re struggling with your mood. “There is really good help out there,” says Tayer. “And with the advent of telehealth, your odds are increased for finding a provider somewhere in your state who can help.”
- Look after your overall health. Quality sleep, good nutrition, and regular exercise are all important for general wellness and help manage symptoms of depression and anxiety. You can also use other health professionals like dietitians, physical therapists, or pain management specialists, depending on what your symptoms are.
- Use solid resources. Sites like the American Liver Foundation, the National Institutes of Health, and the CDC are good sources of information about hep C. “Stick to verified websites that are science-based with medical research behind them,” says Tayer. “That way, you’ll know what to expect with symptoms, the clinical picture, treatment, and how you’ll need to take care of yourself.”