My Hep C Diagnosis Story

When I was first diagnosed with hepatitis C as a young adult I had less than spectacular interactions with healthcare workers. These weren’t exclusive to my having hepatitis C, mind you. Nurses and doctors also have provided less than stellar healthcare and bedside manner because I’m in long-term recovery from substance misuse.

Stigma from the healthcare community

I have seldom experienced any stigma around being diagnosed with hepatitis C from persons outside the medical or healthcare community. I find that often persons outside the medical community have very little awareness of the existence of hep C. That was certainly true for me before I was diagnosed.

My diagnosis process was something I found to be extremely traumatic. It completely changed my entire point of view on the medical profession in a negative way. On the day I was diagnosed, I had no idea what hepatitis C was or how this could have happened to me. I was scared, just newly an adult, living in a new, big city, and was having some unusual and terrifying health issues.

The day I was diagnosed with hepatitis C

I had sought help at a walk-in clinic close to where I was living the day before and was returning to hear the results of my blood work. I was ushered into a room where I waited for the doctor. A 30-something-looking man in a white lab coat entered the room. I distinctly remember that when he entered the room he didn’t make eye contact with me. After confirming I was indeed the patient he needed to speak with he began.

“You have hepatitis C,” he said.

I responded by asking what that was.

“It’s a liver disease. You probably got it from shooting up,” he said. His voice was curt and monotone.

I assumed at this point he had reviewed my medical information and had seen evidence of my previous substance use from hospital visits and my stay in residential treatment. I wasn’t sure, though, because I don’t remember telling him about any of it.

Afraid to die from hepatitis C

I left that clinic that day feeling hopeless, afraid I was going to die. I remember calling my mom and telling her the news. At this point, I did not know that my grandfather had died from complications due to hepatitis C. I would find that out later that very day, which would only further intensify my fear and anxiety.

For a long time, that was the only information I had about hepatitis C. It was a liver disease, and it had been passed from blood-to-blood contact. I was too afraid to find out anymore.

New city, same stigma

Shortly after my hepatitis C diagnosis, I moved back home. I wish I could say that was my first and last experience with healthcare provider stigma, but it wasn’t. The one thing I knew about my experience was that I didn’t want that to happen to me ever again, but that didn’t seem like a realistic thing to hope for.

I understood that this was probably going to be a widespread problem. The city I had been diagnosed with hepatitis C in and had just moved from was eons more progressive than where I was moving back to. I estimated that the medical care I would receive might also follow suit. This estimate, unfortunately, proved to be partially correct.

When life gives you lemons...

This first experience, however, would set a precedent that would eventually lead me to develop skills in advocacy for myself in terms of my hepatitis C care and eventually others too. My process of being diagnosed with hepatitis C was one of my first “in your face” experiences of stigma. Luckily, it gave me the initial boost of strength and determination to make lemonade out of lemons, with one of the most difficult experiences of my life.

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