For many of us, we’ve lived with hepatitis C most of our adult lives. It has formed a hard shell around us, cutting us off from much of our lived lives. It has been like viewing things through a clouded window. We see what is there, but we don’t see the detail, the colour, the vibrancy. We have been so busy managing our health, or dealing with the fallout from HCV that we have forgotten to grasp life and squeeze the marrow from it. We’ve survived, we haven’t lived.
And now the new direct acting antiviral treatments such as Viekira Pak have broken the shell, splitting it asunder and allowing light to flood in to our lives.
It can be hard to deal with light shining into the darkest corners of our being. It may be therapeutic but it can also be uncomfortable. It illuminates the roads not travelled, the choices not taken, the lives not lived. It shows us how much we have lost through hepatitis C and how much we have allowed to be taken from us.
I’ve read of so many people expressing confusion and uncertainty following their treatment. Some people, myself included, thought how it would be tempting to stay on the anti virals that kill the hep C virus forever. Certainty. That’s what we are after.
People have talked about how the end of treatment has been in some strange way as challenging as treatment, because they are forced to confront what their lives have become. It has made them realise the work they need to do to change things.
The period after treatment can be a strange half life, a life of flickering light and shadow. It may encompass depression, anxiety and fear. And it’s okay to feel like that. We have just fought one of the most important battles of our life and we still aren’t sure what form the future will take.
Luckily for me, these issues and more are discussed on the Hep forums. The ability to talk through weighty issues like these is vital for us. We need to know that others have grappled, are grappling with the same issues. It’s important to us that others are facing their own futures free of the spectre of hepatitis C and doing the best job they can to make sense of their lives.
We need to know we are not alone.
"I to the world am like a drop of water
That in the ocean seeks another drop"
* thanks to the contributors in this thread who provided me with the idea for this blog post.