Our Truth: Hepatitis C Experiences

Recently, in a thread on social media, a friend remarked about another person speaking their truth. It made me think about just how truth can be a subjective thing and is often open to interpretation. Knowing that there are some things that are considered to be absolutes and are universally accepted as truth, there is still room for nuance and discussion. These are the places where our individual truth resides.

The challenges of absolutes

It can get very tricky, and if something is presented as an absolute truth in words that mask or misrepresent what are considered universal truths to make a point or support an agenda, it gets even more tricky. We are seeing more of this kind of thing in recent times, in my opinion.

In the world of medicine, we see evidence-based science as being the guiding principle in deciding what is true and accurate. We can argue with evidence, and I do understand that numbers/statistics can be used to tell a story which may not always be accurate or objective. It can be used to promote or support a narrative and specific agenda. It’s tricky.

Accepting a hep C diagnosis

As people who experience a disease or illness, is that experience not a truth? When you were diagnosed with hep C, chances are it was accurate and true. Barring a false-positive result, you can be assured that you do in fact have hep C (as much as we wished it were not true we accept it at some point. With all the things that come with a diagnosis like ours, we understand that the science is reliable. There are some people who will deny many aspects of the science around the course of disease or treatment pathways, but on the whole, we do accept the science. Why?

Evidence is what guides us

We pick and choose what is accepted as truth, and faith and hope are always in the mix regardless of evidence. Your truth may not be mine, as much as your experience may not be exactly the same. Does that diminish your story in any way? No, it doesn’t.

Lived experience is not evidence in itself, certainly not in any scientific sense that I am aware of. Does an agenda drive the kinds of questions and outcomes we expect or desire? There is always a risk of this happening, and why it is critical that people with lived experience play an important part in designing and implementing this sort of science. Will your truth be reflected in such a study or survey/scan is never guaranteed, but if you participate, there is a greater chance of that happening.

Speak up!

I would encourage you to participate in these things when it is reasonable for you. Your truth/experience is important, and the reality is that you may share more than you think with others who have lived experience. Together and as individuals, we have much to contribute. Please stay engaged.

Ready to speak-up? Share your story, ask a question, or participate in our forums.