Thoughts and Reflections

As I sit down to write these pieces I often don’t always know exactly what I am going to write about other than a few words that may be part of a theme or recollection. It may be prompted by a discussion with someone or a memory of one of my own experiences in my HCV journey. I talk but mostly listen to a lot of people in various places in their own journey, to include people asking about risks, those who are newly diagnosed and those who are looking to treat and those who may have treated before.

It is from this pool of experience that I draw on for my inspiration to write and advocate for the community when I am speaking to people who have little or no real life experience with people who have lived experience. It is after all something most people still know little about- living with HCV. Physicians and scientists understand the mechanics well, and the social justice folks understand the impact it has on community, and many who are involved in assisting the communities affected are more apt to understand how some people are further marginalized by hepatitis c.

It is an honour for me to have an opportunity to speak and write about the issues that are apparent to others and me. I am no policy designer or maker, I am not a scientist or physician either, I am only one member of a very large community of people who have been directly affected by this virus.

We are not made up of one singular type of person-no stereotype fits as we know and have known for years. We come from all walks and we are as different or similar as every other person is. We are like all people, but we have an illness caused by a virus that causes more and more of us to be sick. When I say sick I mean a whole range of things when it comes to HCV. For too many friends it has meant the end of their lives. Too many have been lost and we will sadly lose more.

Many of you, like me, have been told by doctors and others that the symptoms we had were not related to having hepatitis c. Why and how were questions asked in community groups and forums. We wanted answers to why we felt the way we did before, or even now after cure.

Again, we are all different in how the virus affects us but there have been a few common threads that we have seen for years. Some have been investigated while others remain undiscovered or given any credence by evidence based study.

We need to continue to ask the questions and tell others who will listen, what it is that we are experiencing. It is through dialogue that we will see a better future for all of us who have been around a while and for those who are just now beginning their journey. I see evidence now in how the discourse has changed about HCV. We are making a difference in ways that may not always be apparent or obvious. HCV is gaining more attention with each passing year and we will not be ignored in the same way as we have seen in the past. I have come to realize that the best thing I can ever give others is hope.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The HepatitisC.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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