Help - I’ve just been diagnosed with hepatitis C

This section is designed to be an overview. All of these subjects are covered in greater depth throughout the site.

First and foremost, try to remain calm. You may feel shell-shocked, angry, confused, like it’s the end of the world, or possibly a whole range of other emotions. This is totally understandable. How you deal with the news is going to be different for everyone - there is no right or wrong way.

You should keep in mind that it is positive that you have been diagnosed as it has given you a chance to look at the options for addressing it and at the different ways you can start caring for yourself.

Being diagnosed with hepatitis C is not a death sentence and there are many things you can do to ease the situation, slow down disease progression and possibly even clear the virus through treatment.

Some people (one in five) exposed to hepatitis C will naturally clear the virus. Others may be able to clear it through treatment. Either way, it is possible to be become virus-free. Unlike HIV, just because you have hepatitis C now, it does not necessarily mean you will have it for ever.

Possibly one of the first things to do is let the news sink in. How long this takes will vary from person to person and is an ongoing process. You need to get used to the idea and after that - and only then, you can start to make rational decisions about how you wish to deal with the virus.

You may find it useful to talk to whoever diagnosed you, but you may find it particularly helpfull to speak to someone who either has, or has had, hepatitis C. Speaking to someone who has been in the same boat can be hugely beneficial and take some of the fear out of the diagnosis. It can really help you to get some perspective and gain a better understanding of what having hepatitis C is actually like.

There may be local support groups near you where you can meet with others, or you can call our helpline on 0845 223 4424 (10.30 to 4.30 mon to fri) or email us at helpline@hepctrust.org.uk and we will be able to answer any questions you may have and can relieve some of your fears. Some people prefer to contact others on the internet – click here to look at our Support section for the range of options available

It’s highly unlikely, unless they mixed up your results with someone else’s. A confirmed hepatitis C diagnosis can only be given following specific tests on your blood that show the virus is present.

It is possible that your doctor or health care specialist suspects you may have hepatitis C, possibly because of some symptoms you may have. However, this should not be confused with an actual diagnosis. If you have not had a blood test, then you cannot have a confirmed hepatitis C diagnosis.

A blood test to detect the presence of the hepatitis C virus in the blood is the only way to confirm that you are currently infected with hepatitis C.

Usually there is a two-tiered blood testing process.

Initially your blood may be tested for the presence of hepatitis C antibodies (i.e. an antibody test). If this comes back positive, then it only reveals that you have been infected with the virus at some time. If it is negative, then you may be required to have another test a few months later. This is called the window period – the rough time it can take from initial exposure untill the anti-bodies to the virus becoming detectable in your blood.

Then a further test, to check for the active virus will be necessary. If this is negative, then you have had hepatitis C but are no longer infected (this happens to one in five people and is called “spontaneous clearance”). However, if you have an positive PCR test then that means you currently have hepatitis C. Sometimes this is ALSO referred to as “chronic” hep C or CHC, (chronic meaning an ongoing infection).

There are a number of ways you may have contracted hepatitis C. Maybe you already suspect how you got it. For some people it is not important, others need to know. It can be useful to have an idea because then you can work out roughly how long you have been infected. However, the truth is some people will probably never be able to be totally sure how they got it. There are a number of ways you could have caught the virus and most people don’t get diagnosed until many years after initial infection. Don’t be hard on yourself and create more stress by dwelling too much on the past – the situation now is that you are living with hepatitis C and you need to take some time to think about how you want to deal with things.