Hepatitis C and the Precautions That Surround It: Dealing With Disbelief
I have lived with hepatitis C for 35 years. Following a car wreck in which I became a paraplegic, I received a blood transfusion. On top of all my physical injuries, the blood from the transfusion was tainted and infected me with hepatitis C.
For many years, the hepatitis C didn’t give me any problems and my doctors kept telling me not to worry about it. But then, once the AIDS hysteria broke out, I started hearing more about hepatitis C. The healthcare industry was learning more about how the virus was transmitted and some treatments for it came on the market.
Still, throughout my experience with hepatitis C, I felt the need to adjust my behavior in response to precautions taken by both medical professionals and the public.
I don’t blame my doctors for not knowing all there was to know about hepatitis C back in the 80s or even in the early 90s. It was a form of the disease that doctors, researchers - basically, everyone in the medical field - was only beginning to understand.
But the precautions the healthcare industry began to take in dealing with hepatitis C made it clear to me living with this virus wasn’t only going to affect me, it would affect my close relationships as well.
One specific incident comes to mind: My husband went to give blood at our church, just as he always had. But when the team running the blood drive found out he was living with someone who had hepatitis C, they didn’t accept his blood. They flagged his name across the local network so he wouldn’t be able to donate anymore when our church hosted a blood drive. Many people from within our church community were in the room and overheard the conversation. He felt so belittled.
The regulations on blood banks have changed completely since 1979, when I received my transfusion. Back then they didn’t routinely screen for these blood-borne viruses. If you compare that to how they reacted to my husband, it was a complete 180. They went from not screening blood samples to rejecting my husband strictly as a precaution, without any actual evidence that he had hepatitis C himself. The reasoning was simple: because he was living with a partner who had the virus, he could have the virus, too. Well, my husband scheduled an appointment with his doctor soon after that incident at the church and he tested negative for hepatitis C.
I felt really terrible about what happened to my husband at church that day. That was when I started to feel uneasy about how my social community perceived me because I had this virus. I thought, if trained professionals were taking such strict precautions, imagine what my friends think.
When dealing with a virus that’s unfamiliar and dangerous, people are understandably cautious. It’s confusing when medical authorities come out with a statement explaining how you contract the virus and then, the next thing you know, they’re saying something different.
Now, if my friends felt uneasy about spending time around me, they never let me know. Nobody made me feel self-conscious. But I changed my behavior regardless. I didn’t want my friends and family to feel concerned about catching the virus, so I became extremely cautious for their sake.
Whenever I was eating with friends and family, I only touched the food on my plate, and I never served food to others. With my children and grandchildren, I never let them drink after me or use my utensils. I never even kissed my grandchildren on the lips. I took these precautionary steps, not because there was actual evidence that the virus spread in these ways, but because I felt it would be better for everyone if I erred on the side of caution. I just didn’t want anyone to feel the need to worry.
Finally, Some Good News
In the last six months, everything’s changed for the better. I went on a new treatment for 12 weeks and I’ve since cleared the virus completely. I can’t even put into words how liberating it is. My friends, family and I know it’s a miracle, and it’s hard for any of us to believe. But it’s true!
Brenda lives in Denham Springs, Louisiana, feels stronger every day and is happily sharing her experience with hepatitis C to anyone who would benefit from hearing her story.
Editor’s Note: Hepatitis C is not spread by casual physical contact.