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It seems like a time for reflection in looking back over the years and my own experience with hepatitis C. I don’t intend to write about all of the misery and struggles I overcame and was able to be well again despite those challenges I faced. No, not that at all but about you and others like you who make up the community of people I have come to know over the years. I know not all of us agree on every issue and some of my friends have a very different perspective on hep C and how best we can deal with it as individuals or collectively as a community. We have much more in common than we don’t.

Lessons Learned Through Lived Experience

Not long after my own diagnosis it became apparent to me that the best place to learn about what it like to live with hep C was from people who had the experience themselves. I knew what it was like to feel sick, as I had been getting more and more sick for years, and there was comfort in knowing how I felt was not unique to me alone. The understanding and accepting nature of the people I met was amazing. To use a well-worn cliché, it was life changing.

It really was that way for me, in finding acceptance and understanding without any stigma from people who were perfect strangers. The kindness and support led to the building of long term friendships I will have for life, even though most of those people are not active in community now. Some remain and they continue to spread their knowledge and most importantly their acceptance, warmth and understanding.

Unfortunately I encountered a few not so great people. In any community one can find a few who will take advantage of people who are in a vulnerable position like some of us are when we are living with an illness like hep C. I would ask everyone to be mindful of this possibility. Be careful but please don’t shut the door to the wonderful possibilities that community affords us when we reach out.

Listening and Learning from Our Community

Listening is something that we can all do better, and it was not always something I did very well. It is to me not enough that we can get something from this community, and what can we give back remains the biggest challenge. How do we do that? Listening to others is one thing we can do, and listening is all that is required at times. Do you recall feeling like nobody understood and listened to you when you talked about your illness? If you know this feeling, you know how isolating it can be.

Stepping off my soapbox, the main message from me is that being diagnosed with hep C was a life-changing experience, and honestly I think it has been mostly made positive because of the community I am a part of. You make this community, not me, not any one person does, and I am just yet another member like you.

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