The Pace of Change
Nothing is truly static, meaning that nothing stays entirely the same. Sometimes the pace of change is so glacial-like in its speed that it is almost indistinguishable as having a pace at all and appears stationary.
The dynamics of change are affected by all manner of forces, from within and without the sphere of the action or activity. Often we associate activity with something positive, but not all actions have a positive outcome regardless of the intent.
One example that interests me is the slow pace of change in the area of general understanding about hep C by society. Never mind the general population, it surprises me how many healthcare providers remain poorly informed about hep C despite the efforts of many to raise awareness and share knowledge-basic knowledge. You don’t have to have a PhD to grasp the basics of testing, transmission routes, symptoms, and basic science/natural history of the virus and how it impacts our health.
We have written hundreds of articles here, with tons of information that has touched on any and all the pieces of information I can imagine that a person needs to know about hep C, running the full gamut. I know some of it is repetitive, and that is no real surprise to me, as I have done it in my own contributions. The changes in new therapies to treat hep C have changed dramatically in four short years, even though the research and clinical studies went on over at least a decade on some cases even longer.
Patients learning from other patients
One area where we have seen little growth, in my opinion, is in the area of people with lived experience being in leading positions or roles as formal educators who are present in clinics and places where people receive their hep C care. This has shown itself to have great value in all kinds of diseases and conditions, and to be frank it has been proven out year after year in practice. Unfortunately, we do not have the proof in data or scientific terms. There is no question about the value that people who have lived with an illness can bring to the table. I have seen it thousands of times and that is no exaggeration. Peers who had gone before me helped me through the most difficult times in my life, and I am now for years passing it forward as many others are. We are doing it in places like this, in forums and facebook, and in real world settings where we are welcomed. Usually we are welcome in very limited roles and for me this is a great and generally untapped resource. With the limited time that health care providers have to spend with their patients we can fill in the gaps about their illness and provide support and empathy much more readily because of our own lived experience.
Opportunities for connection and support
This is to me a great challenge and also presents a great opportunity that could or should be used as a model for other diseases or illnesses. It does exist in a limited way in some (very few) places but I would encourage any of you to seek out ways that you can help others, it is to me the most important thing we can ever do in life.