Whose Job Is It? Advocating for Yourself with Hepatitis C

In our work as peer navigators and support workers, we encounter people who are at various places in their hep C journey, including those who have finished their treatment. In this article, I want to address something I have seen in people who have finished treatment and are dealing with the effects of hep C, most often in people who have lived with the virus for a longer stretch, as in several years and decades.

Long-term health issues after hep C

People who have long-term hep C are more likely to have developed any number of conditions I have written about extensively; including those extrahepatic manifestations, which are simply health issues outside the liver. Bringing it back to the effects of long-term hep C and its effects on the liver, we do see a number of people who are dealing with cirrhosis at different stages.

Some in this group, and most in fact, will have what is called compensated cirrhosis, which is a medical term that generally means their cirrhosis is managed. The other group is the decompensated; This is the group who has more advanced disease and will often experience hepatic encephalopathy, ascites, and other more serious issues like HCC, which is liver cancer, and which can lead to interventions that can include transplant when reaching end-stage cirrhosis.

Taking action to prevent long-term damage

Most of us will not see this advanced condition, but some of us will. How we prevent things getting worse and how best we are monitored plays an important role in our outcome over time. No, it’s not rocket surgery, but it begs the question: Whose job is it?

Well, that depends on what kind of care we have, but ultimately the responsibility is ours, unless we are not able. For years, we have said that we can be our best advocate, and if we can’t, we should seek out help from close family or friends; we can look to places where people help other people. These places exist, and it is once again an important role we can play as peers/people with lived experience, but not exclusively.

Ask for help

Seek out ways you can better represent your needs, and these are things you can read about here, and there are people who openly share in their knowledge and lived experience freely. So, whose job is it to make sure you get the care we all deserve? All of ours. Yes, all of us can play a part in helping one another. It can take many forms, and there are restrictions like there is everywhere, and maybe it is just a suggestion about where and when is a good time to make that appointment you need as part of your ongoing care. It is not always a big thing, and there is not always a simple solution, but we will never know if we don’t ask.