Young Blood

Stigma is complicated. As a vertical transmission, I found out about my status early in life, at the age of 12. While I was diagnosed at a children's hospital, I found myself with a regular doctor a few months after diagnosis.

My experiences as a child with hep C

As a child with hep C, I found comfort from most medical personnel, especially as many would also meet and know my mom. And while we didn't expressly disclose it, our unique last name and my age made it easy to know.

As I grew older and used different hospitals and clinics, I found the same response. I was something either unfortunate, or inspirational, depending on who was evaluating me as a 14 year old boy with hep C. Their summation of my viral infection came filled with either pity and a degree of sympathy or gratitude and positivity.

In the classroom...

It's part of why, as a kid, I had little concern talking freely about it. Schools, however, were not like the medical world; They were a taste of what's to come.

At my school, my name came in hushed tones from teachers. In conjunction with my "disruptive" behavior, I found that teachers responses to the news varied wildly. Unlike the medical world, I was something to be cast aside, during my freshman year my schedule was moved four times until it was settled nearly two months into the school year. I was routinely removed from classes for coughing, or even preemptively.

I felt a degree of comfort in the medical world at that time, because I trusted doctors, nurses, and medical professionals with my life; Stigma was something I saw for my mom, and while in school. That all changed when I turned 18 - I wasn't a child anymore.

Negative healthcare experiences

I will never forget the fear in that nurses eyes when she sheepishly entered the room. She slowly approached my bed; I was exhausted from my internal bleeding, and recovering from microsurgery on the bleed, I didn't see the reason this nurse seemed genuinely afraid of me.

It was 2004. And there were yellow papers on my door and window, with a "caution - toxic" symbol, warning about the potential for blood exposure to hep C - and I had no idea it was on my door. Her eyes open and focused, her hands trembling as she set up the draw. She couldn't look me in the eye, she didn't speak, she came in, moved my arm, located the vein, and shaking, she hastily inserted the needle. My eyes didn't move from her, as I asked her for the time as the clock was out view. No response.

As she wrapped up the draw, I asked how frequently the draws would be. After a few seconds, I could see this required more from me, so I asked again. She answered, "Every six hours" as she packed up her cart and speedily darted out of the room. That look, that fear, that concern, that ignorance didn't wait long to enter my once safe world.

18 with hep C

I was 18 with hep C... which meant it was suddenly "my fault". In reality, it was never anyone's fault, it's just a lack of perspective.

This reaction is part of why I tell my story to every medical professional who walks into my hospital or exam room... So that they know me, and understand a little more of my perspective. Always remember: Stigma isn't about you, it's about them.