Feeling Awful from Hepatitis C: How the Virus Makes You Ill
In recalling the early days of my hepatitis C experience, I am reminded of just how awful I felt for years before I knew it was caused by hepatitis C. Multiple visits to the doctor and a few hospital stays that resulted in no answers made it all the more awful. The not knowing was hard on my attitude, making it harder with each question about what was wrong with me. I heard from doctors and nurses that I was fine and even on one hospital stay, a nurse asked why I was there because I was healthy. I was not healthy and did not feel well at all.
Like most people, I don’t care for hospitals very much, so why would I want to be there?
When people doubt your symptoms...
I learned that this pattern of generally feeling awful in all the ways is a classic example of hepatitis C symptoms. This went on for years before my diagnosis. Sound anything like your experience? I know some people were tested years ago and for one reason or another decided to not treat-generally because of the horrible side effects and the poor SVR rates (curability) associated with the older treatment regimens. As I have said before, many were told they were fine and wouldn’t need to worry about it because it took so long to cause damage to your liver. The liver being the main focus until recent evidence, not to mention what we knew in the community. All of those other symptoms that arise, even in the absence of liver damage or very advanced liver disease.
If you feel sick, you are sick
No matter what anybody tells you or says about it being "all in your head” to quote what many heard for decades or longer, if you feel unwell - you are. The message was that you were imagining things or making them up so that you could get sympathy or even worse: to use as a way to acquire drugs.
Stigma bleeds into this, as it does with hepatitis C, at almost every point in the journey.
Women are even more acutely familiar with the “in your head” nonsense, and as I have learned from people it was not just from male doctors but women doctors as well, which is incomprehensible on the surface. I have heard about how women were dismissed as being hysterical or that their illness was imagined and here are some pills to keep you calm.
We face this stigma far too often
This is the same rubbish that people too often face with their hepatitis C care. I am not saying that all doctors act in this way by no means. We can all point to the good doctors we have known and mostly they are thought to be good doctors because they show empathy and most importantly listen to their patients.
In closing, I want to say again that if you feel awful with hepatitis C, it is real. It may be physical and it may be emotional but how can we truly tease the two apart so readily when they are inextricably linked. Some people will get accustomed to feeling unwell, but generally, we know if something is wrong. Don’t let anyone, and that includes doctors, who may be dismissive, push you to the margins and in the process deny you the care you need and deserve.
Does reading hep C patient stories aid you in your journey?