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Do You Stand Up and Defend a Diagnosis?

When should you stand up and defend yourself and your diagnosis? So many of us go through this fight with hepatitis C feeling alone, belittled, feared, and shamed. It is not something new in the liver community, as this has been happening for decades. When I came into this realm in 2005, not much was talked about with hep C. There was one online support group and so many feared that we would get caught talking about this disease and would end up exposing ourselves to the public. This fear caused us to all stay hush-hush.

Deciding to reveal or conceal

Many did not disclose the reason for stepping down in their careers when they were treating their hep C for fear of what others thought.  I know I did not talk about this nor did my mother in our early days of diagnosis. In fact, my mother and I really did not fully understand what hep C was. All we really focused on was hepatitis.

It was not until I was diagnosed with stage 4 cirrhosis in 2010 did I completely come out with “my story”. I guess I no longer wanted to hide in shame or fear of talk about me. I figured I lost my mom to this stigmatized disease, I was about to lose my fight (so I thought) and I didn’t want anyone else out there suffering in silence or not getting tested early to save their liver.

Finding your voice

There is no right or wrong time to “come out” with your story. No person has to share their story. But as an advocate, I have seen many people transform from being fearful to being that voice to help others. It has been rewarding to see people coming forward.

Again, I stress this over and over, knowing fully about hep C and your own health battles gives you a power that equips you to feel comfortable about talking about it. To this day, I do not know EVERYTHING about hep C and with the constant changes with new exciting treatments, it is hard to stay on top of it. So, if I am approached by a question that I do not have an answer to, I politely say that I have no right answer at this time but will do some research to get the appropriate answers found. People are ok with that. They would much rather be told “I don’t know” than to be told information that is false because someone is afraid to say they don’t know.

There’s no right or wrong answer

Back to when should you stand up and defend your diagnosis? That is strictly up to you. And there is no judgment or backlash if you choose to get tested, treated, and moved on with life as if nothing happened. But, if you feel compelled to be a voice out there, I know all of us advocates welcome you. For each of us has a unique story to tell and all brought together with the same diagnosis…hepatitis C.

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.