Disclosing your HCV Status
Editor’s Note: Are you afraid to talk about your hepatitis C? Some people want to learn more about hep C, but also want to keep their diagnosis private. At HepatitisC.net, there are ways to get information and connect with others, without revealing your identity. Click here to learn more about how to talk about hep C anonymously.
If you have been diagnosed with hepatitis c you have a lot to digest and I know.
It certainly was like that for me, and one of the issues I faced was with whom and when I was going to share my status. To be honest it was not the first thing I thought of. As it turned out I decided to share it initially with only those close to me in family and close friends. As more time passed I decided to get involved in raising awareness about hepatitis c and it made sense to me to be open about my own status.
I am never one to say whether a person should disclose openly. This is because there is stigma associated with hepatitis c. Some people I know say they have never experienced any overtly obvious discrimination or judgement, but most people I know who have lived experience have had the misfortune of feeling the sting of being marginalized by others because of their hepatitis c diagnosis, however covert. I met a person who did similar work in cancer awareness, and we talked about the stigma around lung cancer. If someone is diagnosed with lung cancer it is frequently assumed that they smoked. What the message says is that they made bad choices in smoking and therefore it is their own fault. This is a form of marginalization. Similarly we see that with hepatitis c, at least in some people’s minds.
It can be a mess.
I understand why people are private about their status. Who wants to be treated badly or poorly thought of by others? Some will say they don’t care what others think. Most of us do care what others think, even if we say we don’t, in my own experience.
Workplaces, some family settings, and any number of situations can be uncomfortable when people judge you to be less in any way, least of all over an illness, and nobody ever deserves to have hepatitis c regardless of how they got it.
To be fair, we are seeing some improvements in how HCV is perceived. There are not huge strides, but they are evident as I see it. The advent of new highly curative treatments and the marketing and media attention is helping to change attitudes, but we still have some distance to go. I am not trying to convince you to disclose your status, because you know better than anyone who in your family or circle of friends might best deal with your disclosure.
There are situations where disclosure is important. If you work in a field where you could possibly pass the virus onto others, I believe you have a responsibility to disclose in the appropriate manner, and there are guidelines in place for doing this.
If you are intimate sexually you should disclose to your partner in my opinion, despite the risk. If you are sharing drug equipment you are putting yourself and others at risk. Safe sex and harm reduction in any form is always important regardless of your HCV status.
Education and awareness is key to seeing an end to the stigma with HCV. The more people understand about HCV the more likely we will see positive change in attitudes and perspectives.
In closing, the decision is yours to make, just like all of the other choices we make on our own behalf and that of those around us. Thoughtful consideration and an open dialogue with those people you trust is a good thing when considering whether to disclose or not. It could be a spouse, partner, family member, close friend, or a counsellor.
We can choose to share as much or as little as we want with others. It is your decision to make.