What is the role for the people with lived experience in a changing hepatitis C environment, or is it really much different? I am sometimes asked to share in my insights or ideas. And I have to be frank about my thoughts on whether those of us from the community really do have much impact on the plans, programs, or strategies, which will affect us. My one word answer is “sometimes”. We do have a role to play and it is my hope that you have both the time and willingness to do this important work.
You may have been asked to participate in a consultation role, and we are from time to time given an opportunity to share our personal experience, or story. As far as any ongoing programming input, we are too often seen as having served our purpose once we tell our own story. What I hear from members of the community is that they are being told that “professionals” will do the work which I believe only we can do well, with support from professionals. This is not to say that professional do not have a vital role to play, not at all. They have an investment in terms of the commitment they have shown in devoting great effort in being educated and informed and this has great value to us all.
How do we put this into language that others understand is a challenge that I struggle with, and I don’t mean to say that we have any exclusive claim on the territory of providing care in it’s many forms. I am not a professional caregiver, social worker or a doctor/nurse, policy expert or any version of all that those titles speak to; professionals as they are called.
So what is the role of people who are living with or have lived with hepatitis C? That is something that can look very different to different people, and I do not suppose to be an expert in telling you what role you have to play, and only hope to support the idea that we have a role to play which is unique to those of us who have lived experience.
There is great potency in our role of peer support and navigation. This is a clear path we have seen in community for years in peer support groups here online and some successful in person groups.
Those of us who have worked to support our peers living with and at risk for HCV know that the ticking of boxes is not what is needed, and although it has been attempted by people who do not have the all-important lived experience, it falls short in most ways with some exceptions of course. Just simply stating statistical information and medical or epidemiological data may appeal to some. But in real life, most people seek more. Training is a good thing in my opinion, and it will help you to understand some important guidelines and issues that inform the work. There are places where this training is available and I recommend it, and when our peers give it it may be easier to grasp, but there are some professionals who have a good grasp on the key points.
Remember that you have something that can help guide you, and never diminish the importance of lived experience because you earned everything you know – we all have the scars to prove it.
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