It can be upsetting and overwhelming to find out that you have hepatitis or another type of liver disease. You may feel a wide range of emotions, such as fear, anger, depression, worry and grief. If you were feeling well at the time of your diagnosis, the news can be especially shocking. You probably have many questions. Your mind may be churning, wondering how you got it, how serious it is or whether you could die from it.
It can be scary at first, but with the help of your health care provider along with good information, support and a tincture of time, these fears will fade. Your diagnosis may teach you how to live better. It can act as a wake-up call, motivating you to take better care of your health.
If you’re newly diagnosed with hepatitis or liver disease, take a deep breath, work closely with your doctor and begin surrounding yourself with the support you need. Here are some basic tips to help you get started on the road to health:
- Establish a good relationship with your health care provider. Finding a good doctor is easier said than done. Sometimes it takes a few appointments before you know whether someone is right for you. At your appointment, it’s helpful to write everything down, including the questions you want to ask, and your doctor or nurse’s response to your questions. Prioritize your questions, asking what you most want to know first.
- Connect with others. Hepatitis and other liver diseases are more easily endured in the company of others also living with the disease. Research shows that support groups can provide multiple health benefits. There are also virtual support groups, such as the HEP Forums. You can also connect to others who understand what it’s like to live with hepatitis or liver disease by reading the HEP Blogs and HEP Stories.
- Find support. A friend or family member can be a great source of support when you are newly diagnosed. Consider choosing one or two people you think might best handle the news. If you’re not ready to tell anyone about your diagnosis, that’s OK. Sadly, hepatitis is stigmatized (see below), and although stigma is wrong, it’s best to be prepared to deal with it. Click here for some tips on disclosure.
- Get the facts. Hep offers a full range of information about hepatitis, fatty liver disease, liver cancer and more. Stay current by keeping up with the latest hepatitis news, finding out about events and reading Hep magazine.
- Improve your overall health. Everything goes through your liver, whether you eat it, drink it, breathe it or apply it to your skin. Before you eat or drink something, ask, “Is this good for my liver?” Strive to eat a healthy diet and exercise regularly. Don’t drink alcohol. Get plenty of rest. This is an opportunity to evaluate your health habits and perhaps make some changes.
- Protect yourself and others. Some types of hepatitis can be transmitted sexually or when the blood of an infected person passes into the blood of an uninfected person. It is not passed by hugging, kissing or sharing food. Learn ways to prevent hepatitis to others and how to keep yourself safe from other forms of the virus.
One thing is for certain—you are not alone. Millions of people in the U.S. and the world have hepatitis or other type of liver disease. The majority don’t know they have it, and the fact that you have been diagnosed means you are ahead of the game.
Stigma & Hepatitis
Unfortunately, hepatitis is stigmatized, largely due to ignorance about the disease. One reason for the stigma is that hepatitis is potentially infectious. Although some types of hepatitis may be passed sexually or via blood-to-blood contact, people are not at risk during casual contact. Hepatitis isn’t passed by hugging, kissing or drinking from the same glass. Nevertheless, people may be fearful that they can “catch” hepatitis from someone who is infected. Some people with hepatitis don’t disclose their status because they are afraid of being shunned. Fear and ignorance have cost people their jobs, friendships and relationships.
Another cause of stigma relates the association with injection drug use. People often lack compassion and understanding about injection drug use. Former injection drug users may feel haunted by their past and want to avoid this label. Active injection drug users carry the burden of having two stigmatized diseases: addiction and hepatitis. Those without a history of drug use do not want to be labeled as injection drug users.
For some, the stigma is more difficult to endure than hepatitis itself. Here are some suggestions for dealing with hepatitis-related stigma:
- Educate yourself and others. Inaccurate information can perpetuate stereotypes.
- Get support. It helps to spend time with others who share similar experiences.
- Join a patient advocacy group or local viral hepatitis task force. Help bring about change.
- Challenge stereotypes. If you do not like how media and marketers portray people with hepatitis B, let them know.
- Take action. Make use of social media and other tools to change the political and social climates. Call or send letters, emails, tweets and faxes to legislators, policy makers and other agencies. May is Hepatitis Awareness Month and an especially good time to become involved.
- Confront stigma—even if you think that one person can’t make a difference. As anthropologist Margaret Mead said, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
Last Reviewed: June 29, 2023