Next step: Recalibration after cure

Posted 05 June, 2019
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As people are completing treatment and more people are curing hepatitis C than ever before, we are having more and more conversations about moving forward with life without hep C. It is something that doesn’t get discussed often enough. Specialists, liver clinic nurses and GPs are focused on the clinical aspect of treatment, how many pills to take, when to take them and the cure rates. But the conversation about what life might look like after treatment, is a conversation that is just as important.

We often refer to this process of adjustment as recalibration. For those who have had hep C for many years it becomes much more than just a health issue. Once the hep C is gone, people often need to develop new ways to manage and move forward. This is recalibration.

The hep C becomes part of their armour, their decision making process. It is often described to us as a being a big part of what defines them as a person. They have experienced high levels of discrimination and stigma, they have lost jobs, they have lost relationships and family members. The virus is gone but after 20 years of shame and stigma how can everything just be different tomorrow – how can they wake up and pretend this hep C journey never happened?

There is also an identity shift that can take place after treatment. Successfully clearing hep C allows people to start again so to speak. A clean slate as it is sometimes described. Many people look at being hep C free as a reason not to return to old ways, old networks and move forward with things that they see as more positive, such as new jobs, returning to study or rebuilding relationships with lost family and friends. This can be a positive and exciting step forward but this can also be a scary thought – change can be hard.

Some people will celebrate or have a party when they clear the virus but for others that idea is far from reality. Many people feel overwhelmed about such a big life change. They also feel that something is wrong with them for not wanting to jump for joy after they have cleared hep C. These mixed feelings often bring about high levels of emotion and sometimes sadness. People often share with us that they think they are ‘supposed’ to be happy and then become upset, mad or feel stupid for not feeling this way.

For others the idea of being hep C free can cause feelings of guilt about actually being clear. Often people feel guilty that they have cleared the virus while others have not. Many people will be grieving for something that is hard to explain or discuss with others. For many it can be a slow process to come to terms with being hep C free. It can be an exciting, wonderful and life changing time. It can also be a huge adjustment.

It is a milestone to have cured hep C, but be kind to yourself if you are still coming to terms with such a big change. It can take time to understand what it means for you. It took time to get where you are now, so it is ok to take time to move forward to the next step. It is important to take time for yourself and don’t feel that you have to rush these feelings and adjust to the new you!

Some tips that may help make the recalibration a little bit easier… take a trip, take time just for you, practice self-care, create a vison board of what direction you want to move in, write your feelings down then throw them away or even burn them, talk to someone you trust such as a friend, family member or even a counsellor.

You can also call the Hepatitis Queensland Infoline on 1800 437 222 anytime Monday to Friday 9am to 5pm to talk to one of our staff.

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