Have you ever felt like nobody was listening or understanding you? Have you ever felt like people readily dismissed your statements about how you were feeling or the pain and discomfort you feel?
If you answered yes you are not alone. I have felt it too, and at some points along the road I simply gave up on trying to explain. This can be problematic when it comes to getting the right care, not to mention garnering any empathy or support from others who you think can help you deal with the issue or issues you are experiencing.
Looking fine doesn’t mean feeling fine
Some will surely say you look fine to them and some of the time you may even act or feel fine-ish. Some of us, and according to the experts, experience no symptoms from living with hep C. Well I have to say that in my own experience I have crossed paths with some who fit into that category but most are not, especially the people who may have been living with hep C for many years.
Feeling invisible and living with what is often an invisible illness is a tough combination indeed. People can equate yellow skin and eyes (jaundice) as a sign of liver disease but few will show the effects of hep C until they are very ill in fact.
Add in stigma, on top of everything else
This whole invisibility thing is not unique to hep C, but add on some other burdens and it is definitely unique to me. And perhaps you know what I mean. Rarely in any disease or illness do you find the added burden of our nemesis stigma. Don’t get me wrong; there is stigma with other illnesses like lung cancer and how the first time it’s mentioned, people ask about smoking and whether the person was a smoker. Evidence may well suggest that smoking is a huge contributor to lung cancer risks, but it is still an added burden because the message is about blame and fault. Just what someone needs at a time when they are facing the battle of their, and for their life.
Yes I have talked a lot about stigma, and it may seem redundant, but it remains as another cause of harm to people affected.
How can we support each other?
Imagine, unless you know, how it feels to be impoverished and dealing with all of these challenges. Imagine adding addiction and a bundle of other day-to-day battles for survival. Perhaps feeling invisible takes on a whole new level of meaning. Yes, I know that we are not all living in poverty and with addiction, but these people are part of the greater community of people living with hep C. The challenges are different and mostly more severe, but all the more reason we should help. In supporting a non-biased approach we can all be lifted up, can we not?
We can all help remove the veil of fear and discrimination. With more open and frank dialogue, we can change the narrative about hep C. It won’t happen overnight and we know there is much left to do, but we will do these things because they are the things that are just and fair for all, in my opinion. Lets make sure that nobody feels invisible when they want to be heard and seen.