So, How'd You Get It?
"So, how'd you get it?" It’s ALWAYS the first question. It doesn’t seem to matter where I am or who I am interacting with. When being a hep C survivor is brought up, the first words out of the other party's mouth are always, "So, how did you get it?". The question seems innocent enough, and my experience has shown me that when they ask that it isn’t malicious in intent. Most people I have met have little to no knowledge of hepatitis C, so it seems fair enough they would be curious, right? What they don’t know when they ask that question is the history and growth that question has led me too.
For many years, I lied...
I used to have an entire arsenal of responses, some more truthful than others and which response I gave depended entirely on the energy of the question asker. If I sensed I would be judged, I would avoid the topic of substance misuse and give a more subdued answer, often affirming that I didn’t know how it happened. I’ve blamed my illness on a tattoo, on contaminated nail equipment, anything so that I did not have to deal with the uncomfortable stares and feelings of being looked at as "soiled".
With age comes understanding...
As I have gotten older and (hopefully) wiser, my attitudes about my lived experience of hepatitis C have changed exponentially. My role in working in the hep C field has certainly played a part in helping me overcome my hepatitis C stigma. It took a lot of self-reflection to understand that if I am going to help others overcome the stigma, I had to do much self-exploration to ascertain why I felt so ashamed of how I contracted this disease. And like a lightbulb appeared out of thin air I had a realization, maybe even a psychic change!
The ‘how’ doesn’t matter!
I finally felt comfortable enough in my skin and realized it does not matter HOW I contracted the disease! It seems like such a simple sentiment, but this realization had a profound effect on my mindset and self-worth. Reexamining my own beliefs on my diagnosis and the acceptance of my diagnosis were profound moments for me in my hepatitis C journey.
Changing the dialogue for everyone
I believe that now that I have reached a level of self-acceptance that I must pass on what I know to all that will listen: medical professionals, family members, friends, and colleagues. It is inevitable that when ‘outed’ as a person with HCV that the question of contraction will be asked; It's how we respond and counter that stigma that truly will change the hepatitis landscape. I never want someone to feel the fear and shame that I did when I finally and truthfully announced for the first time: My name is Emma; I have hepatitis C that I contracted from my addiction. This does not define me, nor does it make me less than. It just makes me, me!
Have you disclosed your hepatitis C diagnosis?
Do you experience long-term side effects from hep C treatment?