Peer-to-peer counselling for people with hepatitis C has been available in the United States for several years. Now people in British Columbia have their own help line through the Pacific Hepatitis C Network.
This is great news for Canadians who have hepatitis C and want to talk with someone who has had their own experience with the disease. The toll free number for British Columbians is 1 888 411 7578. Ask for Daryl Luster.
For the U.S. helpline, please call 877-435-7443.
If you’ve been following this blog, this may be the first time you’ve seen what I look like. I started writing about my experience with hepatitis C very soon after my diagnosis. But like a lot of people, I was shy and didn’t want to announce my illness to the world. This week I decided to post my mug shot right at the top of this page. During my treatment and up to the time I learned that I have probably been cured, I’ve thought a lot about friendship. I’ve decided that people aren’t really my friends if they think I might infect them or if they question my integrity because of my illness.
I’ve decided to fraternize only with caring, openhearted people. Having hepatitis C has helped me to be more efficient in sorting the wheat from the chaff in people. Since you’re reading this blog, I’m pretty sure you’re among the wheat.
If you tell your good friends you have cancer, heartfelt concern will pour out to you from their eyes. But If you tell your friends you have hepatitis C, their eyes will probably turn away in thought. Being polite, as most people are, your friends are unlikely to tell you
- they assume that you contracted hep through risky behavior and that you are continuing the behaviour
- they fear you’re contagious.
All behaviors that result in any disease are risky, but any Baby Boomers who were completely free of risk during their youth were probably living in monasteries. We’ve all grown up at least a bit since then, haven’t we? In fact, any acquisition of the virus is by nature an accident, except for some documented cases of hep being spread in health care settings. Still, friends couldn’t possibly understand the whole story of your own HVC infection in as much depth as you do. And they’re more likely to be lottery winners than to have gained as much knowledge of hep transmission as you have. But hey, if they’re lottery winners, maybe they can help you with the high cost of drugs!
So do you tell your friends about your infection or keep quiet? My solution when I was first diagnosed was to tell only my family and dearest friends, and only under these four conditions. I would tell them:
A friend is there to listen.
- in person
- in a quiet place
- when they had time to hear the whole story about my infection and about the extremely low probability that anyone could catch hep from a friend
- after they promised not to tell anyone else.I stuck to these conditions for six months. During that time some gossip spread to people I hadn’t told personally about my help, and with hep on my mind all the time, it got harder not to tell people. Now, after learning last week of my 12-week sustained virologic response (I’m cured!) I am letting the hep cat out of the secret bag. Today I will open my blog to the world and let my friends–including those I’ve never told–know about it.
I’m feeling free now.