Science and Experiential Learning: Understanding Hepatitis C
There is a place where science and experiential learning intercept. Some call it a nexus, while others call it something else. Over the years, in conversations with people who have lived experience, they have shared just that: lived experience. They experienced through living with this or that as a result of their hep C.
Understanding hepatitis C
Understanding helps to demystify the complexity of viral hepatitis, so that we can as people affected by hep C better understand the language and terms used and the implications for our health. This extends to family, friends, and a broader community of peers. Our own experiences, in combination with the scientific and clinical knowledge, are key pieces in a puzzle that initially overwhelms, as we all encounter with a hep C diagnosis.
My hep C experiences
When I was diagnosed, I knew virtually nothing about hep C. As I have said many times before, it was in community groups and forums that I was able to learn so much about what I could potentially expect or experience. There were those who offered great knowledge about the science, and others who offered emotional support; They were both hugely helpful in those dark days when I thought my life was doomed. It wasn’t doomed, as I learned.
Understanding my own tests and treatment
As a person who wanted to be involved in my own care, understanding what tests meant and to better grasp the implications of my condition and any treatment proposed, it was both the experience of others and the science I could find that helped me better understand my predicament. Understanding the science can be a challenge, but there are sources available that provide more easily understood knowledge.
Getting involved myself in knowledge translation went a long way towards feeling empowered and able to make informed decisions. It also helped me to be better equipped to explain in terms that are not too sciency, things like antibody testing, RNA testing, and the entire cascade of care from diagnosis to cure, after care, and beyond. That explaining has provided me with some skills that I have used to help others who are new to a hep C diagnosis. It has also helped me better understand and communicate to others the hope that they too can be cured and get well again.
One thing I have learned is that we can overcome fear with understanding and patience. This is the empowerment part that goes with any health concern. As complex as the science can be with hep C, when it comes down to it, if we persevere and take a little time we can do better and get better. You can get better. ever give up on that belief, and you will overcome this just like you have in any other challenge you have faced in life. I believe in it and hope you do too.
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