Around 2.4 million to 3 million people in the United States live with hepatitis C. The real number is likely even higher because more than half of people who have hepatitis C don’t know it. The stigma around this disease is one reason many people avoid getting tested.
In one study involving 270 people with hepatitis C, 95.5% of participants said they had experienced stigma at one time or another. Stigma involves feeling that you are being judged or discriminated against because of your condition.
However, stigma doesn’t always come from others. People can also experience stigma in the form of shame or embarrassment about their own health conditions.
Stigma around hepatitis C can harm personal relationships and lead to feelings of loneliness and isolation. It can also prevent people from getting the treatment they need to cure the disease.
A lot of the stigma surrounding hepatitis C has to do with misunderstandings about the way the virus spreads. Hepatitis C passes from one person to another through direct contact with blood that is carrying the hepatitis C virus.
You cannot get hepatitis C by hugging or kissing someone or coming into contact with their saliva, such as by sharing a glass. Still, people who don’t know enough about the virus may be afraid that they will “catch” it.
This fear can cause people with hepatitis C to hide their diagnosis out of concern that they’ll be shunned.
Another aspect of stigma comes from the association between hepatitis C and intravenous (IV) drug use. The most common way hepatitis C is passed from person to person in the United States is through shared needles and syringes when people use injected drugs.
But this does not mean that everyone who contacts the virus is exposed to it in that way. And even if someone is exposed to the virus through drug use, they are deserving of support rather than judgment.
People who have used drugs often face the dual stigmas of hepatitis C and addiction. Managing these health conditions can lead to stress and loneliness. Finding support can also be challenging.
A portion of people with hepatitis C also have HIV, a virus that comes with its own stigma. Hepatitis C and HIV both spread through blood and may be linked to IV drug use. People who have both conditions often have lower self-esteem and feel like other people are uncomfortable around them.
Stigma can come from anyone in a person’s life, including family, friends, and co-workers. It can even come from the person’s own feelings of shame or confusion about their diagnosis.
A lack of knowledge about the virus and how it spreads can increase stigma. People may unknowingly ask hurtful questions like “How did you get it?” or “Am I going to catch it?” That’s why sharing factual information and building awareness about hepatitis C are important.
Those who worry that their loved ones won’t understand hepatitis C may never reveal their diagnosis to others. Stigma can drive a wedge between friends, relatives, and romantic partners. It can also lead to loneliness and isolation.
A doctor might seem like the one person who would understand what it’s like to have hepatitis C. But even some doctors stigmatize their patients by blaming or shaming them for behaviors that may have factored into their status.
A
People may feel a range of emotions after a hepatitis C diagnosis. They may feel fearful or alone as they process what the diagnosis means for them. Living with a chronic disease can affect self-esteem, mood, and quality of life.
Stigma can worsen the anxiety and stress of living with this condition. It may also prevent people with hepatitis C from getting the support they need to care for themselves physically and emotionally.
The stigma surrounding hepatitis C prevents some people from even getting tested. Those who avoid testing can’t get the treatment they need to prevent complications like cirrhosis and liver cancer.
Even people who have a diagnosis and are receiving treatment may not continue taking their medication if they don’t feel like they have good support.
Addressing stigma is a complex process. One 2021 study found that increased knowledge about hepatitis C was associated with a greater experience of stigma.
The researchers suggested a few possible reasons that a deeper understanding of the virus could lead to feeling more stigma. Among their reasons are:
- Knowing more about the virus can also mean knowing more about stereotypes and stigma, so people are more aware of when they’re perceived in this way.
- Increased fear of stigma may lead people to keep their diagnosis secret, thereby eliminating possibilities for support.
- Fear of transmission to a loved one or disease complications can cause internalized stigma or shame.
In order to address the complex needs of people with hepatitis C, the researchers suggested that in addition to treating the virus with medication, healthcare professionals need to treat the person with a psychosocial approach.
While it’s important to educate those who receive a diagnosis about the virus, treatment, transmission, and other medical details, more attention needs to be devoted to eliminating misconceptions, exploring people’s personal beliefs about the virus, and establishing support.
If you’ve received a diagnosis of hepatitis C, it’s important to learn more about what that can mean from reputable sources in order to avoid misinformation. You can ask your doctor for more information or reach out to your local health department.
You can also find resources online from groups such as the American Liver Foundation and the Hepatitis C Association.
You can dispel misinformation by sharing the information you learn with the people in your social circle. Let them know they can’t catch the virus from casual contact like shaking hands or hugging.
You may also feel relieved to know that hepatitis C is highly treatable. Direct-acting antiviral drugs cure the virus within 8 to 12 weeks in most people who take them. However, keep in mind that a cure may not relieve the emotional reaction to your diagnosis.
It can be helpful to find a doctor who has expertise in treating hepatitis C. You should feel comfortable talking with your doctor about your condition and should not have to feel as if you’re being judged. You can also consider seeking therapy to help you manage the feelings that a hepatitis C diagnosis and treatment may bring up.
It’s natural to feel anxious or frightened when you receive a diagnosis of a condition such as hepatitis C. Because of the stigma surrounding the condition, you might not get enough support from the people closest to you.
It’s important to know that you have places to turn for help. Organizations like the American Liver Foundation offer hepatitis C support groups. These groups offer a safe space to meet other people with hepatitis C, learn how to manage your condition, and surround yourself with people who know exactly what you’re going through.
If a support group isn’t enough, you might want to talk with someone one-on-one. Some therapists, counselors, and other mental health professionals specialize in coping with stigma and other issues related to chronic conditions.
Hepatitis C is a stigmatized disease. Stigma can directly affect the delivery of care and quality of life for people with hepatitis C.
Knowledge and support are essential to breaking through stigma and ensuring that everyone with hepatitis C has access to the care they need.