Recognizing and Addressing the Stigma

About 2.4 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 infection is one reason why many people avoid getting tested.

Up to 95 percent of people with hepatitis C say that they’ve experienced stigma at one time or another. Stigma means feeling that you’re judged or discriminated against because of your condition.

However, stigma doesn’t always come from others. People can experience stigma in the form of shame or embarrassment about their own health conditions.

Stigma around hepatitis C can harm personal relationships. It can lead to feelings of loneliness and isolation. And it can 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. It passes from one person to another through direct contact with blood that’s carrying the hepatitis virus.

You can’t get hepatitis C from hugging, kissing, or sharing a glass with someone. Still, people who don’t understand the virus may be afraid to “catch” it.

This fear may cause people with hepatitis C to hide their diagnosis out of fear that they’ll be shunned.

Another part of the stigma comes from the association between hepatitis C and intravenous drug use. The most common way hepatitis C is passed from person to person in the United States is by sharing needles and syringes while using injected drugs.

But that doesn’t mean everyone is exposed that way. And even if someone is exposed to the virus through drug use, they’re deserving of support, not judgment.

People who’ve used drugs face the dual stigmas of hepatitis C and addiction. Managing these health conditions can lead to stress and loneliness. It can be challenging to find support.

A portion of people with hepatitis C also has HIV, a virus that comes with its own stigma. Hepatitis C and HIV both spread through blood and are linked to IV drug use. People who have the two conditions together often have lower self-esteem and feel like other people are uncomfortable around them.

Stigma can come from any part of 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. Others 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 are important.

Those who worry that their loved ones won’t understand hepatitis C may never reveal their diagnosis. Stigma can drive a wedge between friends, relatives, and romantic partners. It can 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.

TO 2017 review of studies found that this particular form of stigma could create issues with people understanding their diagnosis and seeking treatment. Facing judgment from the medical professionals they counted on for help can make people feel like they’re not worthy of treatment.

People 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 on treatment may not stay on their medication if they don’t feel like they have good support.

Addressing stigma is a complex process. One 2017 study surprised researchers when, contrary to their hypothesis, they 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, leaving people 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 those diagnosed with hepatitis C, the researchers suggested that in addition to treating the virus with medication, healthcare professionals need to treat the person diagnosed with a psychosocial approach.

While it’s important to educate those diagnosed about the virus, treatment, transmission, and other medical details, more attention needs to be devoted to eliminating misconceptions, exploring their personal beliefs about the virus, and establishing support.

If you’ve been diagnosed with hepatitis C it’s important to learn more about what that can mean from reputable sources, to avoid misinformation. You can ask your healthcare professional for more information, or reach out to your local health department.

Online you can find resources from groups like the American Liver Foundation and the Hepatitis C Association.

Share the information you learn with the people in your circle. Let them know they can’t catch the virus from casual contact like shaking hands or hugging.

You may also experience relief knowing 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 helps to find a doctor who has expertise in treating hepatitis C. You should feel comfortable talking with your doctor about your condition, without being judged. And you can seek therapy to help manage the emotions and feelings that a hepatitis C diagnosis and treatment may bring.

It’s natural to feel anxious or frightened when you are diagnosed with a condition such as hepatitis C. And because of the stigma surrounding the condition, you might not get enough support from the people closest to you.

Know that you do 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 be surrounded by 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 dealing with stigma and other issues related to chronic conditions.

Hepatitis C is a stigmatized disease. Stigma can have a direct effect on the delivery of care and quality of life of people with this condition.

Knowledge and support are essential to breaking through stigma and ensuring that everyone diagnosed with hepatitis C has access to the care they need.

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