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.

“Stigma doesn’t always come from others. People can experience shame or embarrassment about their health conditions.”

Stigma around the disease can hurt relationships. It can lead to feelings of isolation. It can prevent people from getting the treatment they need to cure the disease.

There are a lot of misunderstandings about the way the virus spreads. It passes from one person to another through blood.

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

People with the disease may hide their diagnosis because of fear.

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.

Everyone is not exposed that way. Even if someone is exposed to the virus through drug use, they are deserving of support.

People who have used drugs face stigmas of addiction and the disease. Managing these health conditions can lead to stress. It can be difficult 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. It can come from the person’s own feelings of shame or confusion about their diagnosis.”

A lack of knowledge about the virus can increase stigma. Others may ask cruel questions like, “How did you get it?” or “Am I going to catch it?” Sharing factual information and building awareness are important.

“People who worry that their loved ones won’t understand may never know they have a disease. Stigma can cause a wedge between people. It can lead to isolation.”

Doctors stigmatize their patients by blaming them for behaviors that may have factored into their status, even if they are not related to the disease.

A 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 being diagnosed with a disease. They may feel alone as they process the diagnosis. Living with a chronic disease can affect your quality of life.

Stigma can make people feel worse about living with this condition. It may prevent people with the disease from getting the help they need.

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.

“If you don’t feel like you have good support, you may not stay on your medication.”

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 that a deeper understanding of the virus could lead to more stigma. Their reasons are listed.

  • Knowing more about the virus can also mean knowing more about stereotypes and stigma, which can make people more aware of how they are perceived.
  • People may keep their diagnosis secret because of fear of being stigmatized.
  • It can be difficult to be stigmatized or shamed because of fear of transmission to a loved one.

The researchers suggested that healthcare professionals should treat the person with a psychosocial approach if they are diagnosed with the disease.

It is important to educate those diagnosed about the virus, treatment, transmission, and other medical details, but more attention needs to be devoted to eliminating misconception, exploring their personal beliefs about the virus, and establishing support.

It is important to learn more about what it means from reliable sources if you have been diagnosed with the disease. You can reach out to your local health department for more information.

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

“Share your knowledge with your friends. Let them know that they can’t catch the virus from casual contact.”

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 is important to find a doctor who is experienced in treating the disease. You can seek therapy to manage your emotions and feelings after a diagnosis of a chronic disease.

It is normal to feel anxious or frightened when you are diagnosed with a condition.

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 you don’t have enough support, you might want to talk to someone one-on-one. Mental health professionals deal with issues related to chronic conditions, such as stigma.”

People are not sure if they are a patient of the disease, called hepatitis C. Quality of life and care for people with this condition can be affected by stigma.

Ensuring that everyone with a diagnosis of hepatitis C has access to care is a priority.