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An image of a woman with a megaphone being an advocate

Becoming Your Own Advocate

You’ve got to become your own advocate!  Don’t give up when you don’t get answers to your questions or feel that you’re not getting the medical attention you need.

In my case, I was diagnosed with Hep C back in 2005 when there was not much out there in terms of support.  My first doctor gave me a grim diagnosis and did not even have literature to explain Hep C and provide guidance. In fact, back then, I was referred to an infectious disease doctor.  Well, if that doesn’t make someone feel like they have the plague, then I don’t know what would.

Expectations versus reality

I sat in that waiting room full of people like me – people diagnosed with an infectious disease and feeling like they too were labeled like they had the plague. I thought that I would meet with this doctor and have a list of questions for him. I anxiously waited to talk to him, but when he came into the room, he abruptly cut me off. He simply said, “Kim, you are not sick enough for any of the treatments available out there [interferon]. Just go home and I will see you in a year.”

“A year?” I questioned his timeline. I am here to get rid of this disease and you’re telling me to just go home? As if my life can just pick-up where this horrible diagnosis left off?  I don’t think so. I left his office discouraged, depressed, and frustrated.  I knew there had to be more information out there about Hep C and how to cure it.

Desperate for answers

That is when I began digging into anything I could find. I even went so far as to sign up for Facebook after I searched and found a group who all had Hep C. I quickly joined, and while not participating at first, I would read all the posts and see that I was not alone in my fear, my pain, and the lack of knowledge. Others were also seeking the answers to questions- just like me! I came across a book written by a doctor in Denver, Colorado about Hep C. It was a book of answers -answers such as how I may have contracted it or if I can give it to my kids. Shortly after getting my hands on this book, I scheduled a visit with the pediatrician to have my kids tested. I hesitated to tell the nurse why I needed the appointment because a shame came over me.  Although I did nothing wrong, the shame factor was very apparent.  The results came back fairly quick. I remember getting the call stating they were both negative- Praise God!

Finding my voice

I share my story to let you know that you CAN do this! Information is out there, more support is available for those who have been diagnosed, and more importantly, various treatments are now available with little to no side effects. Plus, the bonus to all this is that the cure rate went from 50% in 2005 to 98% in 2018!1 You CAN do this! Gather your thoughts and focus on what needs to be done.

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.

  1. Morgan JR, Kim AY, Naggie S, Linas BP. The Effect of Shorter Treatment Regimens for Hepatitis C on Population Health and Under Fixed Budgets. Open Forum Infect Dis. January 2018. Accessed July 25, 2018.