What should I do first after a hepatitis C diagnosis?
The first thing is to give yourself time to let the news sink in. This can take a few days or weeks, or much longer. Coming to terms with a new diagnosis is important before you can make rational decisions about what to do next.
This will usually involve finding out more information, which is why we have produced this guide.You can get information from your doctor, from friends and support groups and from other sources including the internet.
As with HIV, learning you have HCV can affect:
- Your own health. This will involve information about monitoring, treatment and things you can
look at in your day-to-day life. - The health of sexual and drug-using partners. This will include information about transmission and how to minimise the risk of passing either virus to others.
This guide covers both aspects and includes a list of other resources for more information.
After 6 years of being HIV positive I mistakenly believed I’d already been hit by the bus and survived so nothing else could hurt me.
Who should I tell?
When you first get an HCV diagnosis, only you and your healthcare professionals will know. It can help to be able to talk about this to a friend, partner or relative that you trust, so that you don’t deal with this in isolation. Who you tell after this is up to you.
Your doctor can only inform other healthcare workers directly involved in your care.
You can take time in deciding who else you want to tell.
I only discovered my HCV status by accident after I volunteered for a trial at my hospital which was looking at whether interferon might be useful for people who had run out of ARV options for their HIV. I can’t say that it came as a surprise (I assumed I was because of my previous drug use) but never really thought about it as I assumed I would be dead by the time HCV kicked in.
Newly diagnosed with HCV
If you have been HIV-positive for a while and were recently diagnosed with HCV, the shock of a second serious infection is difficult. Some of the strengths you brought to your HIV diagnosis will help you now.
It is important to have a doctor who knows about and takes responsibility for both HIV and hepatitis C.
The recommendation to see a specialist is included in the UK HIV standards of care.
For me it was very important to have the HIV and HCV treated together – they are related…their progression is related…a liver specialist is not fully prepared to deal with somebody that lives with the double stigma of having these diseases…and didn’t really understand some of the social and psychological implications.
Newly diagnosed with both HIV & HCV
If you have been diagnosed with both HIV and hepatitis C at the same time, then this is a double blow. If the infections were both recent, then you may be more shocked by the HIV diagnosis, and should use some of the HIV-specific support services available.
It is important to remember that both HIV and HCV are treatable for most patients, including the majority of HIVpositive people. Importantly, research into HIV and HCV is likely to lead to new drugs for each virus, that may be more effective, and easier to tolerate.