The hardest part about living with hepatitis C is the stigma. I remember the first time I felt the sting of stigma. It was after I had first contracted hepatitis C, and although many people don’t go through a serious acute stage, I was hit with debilitating symptoms. I was bedridden and needed childcare to help when my daughter came home from nursery school. The parents of my 17 year-old babysitter told me that I ought to be ashamed of myself for even thinking of exposing their daughter, and told me to look for another babysitter.
I was shocked. If I wasn’t a threat to my daughter, I certainly wasn’t a threat to their daughter. This aspect of having hepatitis C hurts. You know how to be careful and not put anyone at risk, but fear and ignorance can cause others to react like hepatitis C will leap out on to them, which it can’t.
Living with hepatitis C comes down to this: Either keep it a secret, or don’t. If you are going to tell others, who do you tell, and how do you tell them? Here are my thoughts on telling others.
Before you tell others, be sure you know how it's transmitted.
Hepatitis C is the most common blood-borne virus in the U.S. There is risk of hepatitis C transmission when the blood of an uninfected person comes into contact with hepatitis C-positive blood. Hepatitis C is most commonly spread when injection drugs are shared, but there are other modes of transmission. Hepatitis C is not spread by kissing, hugging, or sharing food or drinking from the same glass.
Be prepared to answer questions.
When you disclose your hepatitis C status, people usually ask questions, particularly how you got it. It's a good idea to give them something to read or internet resources that provide more information. (I've listed some below.) If you're uncomfortable with telling them how you acquired hepatitis C, then don’t. It's enough to say that you aren’t sure, because few of us are ever really 100% sure.
If you tell one person, be prepared for others to know.
We are social animals and talking is how we connect. How many times have we promised to never tell another soul a secret, and then swore someone into secrecy before betraying a confidence? Although I am a great secret-keeper now, I wish I could have learned to keep mum earlier. The bottom line is if you tell someone, it may leak to others.
Use extreme caution when telling coworkers.
You are not legally required to tell anyone you have hepatitis C. In general, workplace disclose of hepatitis C status is unnecessary and potentially risky unless hepatitis C interferes with your ability to perform your job. For instance, hepatitis C treatment may impede your ability to work, so it's advisable to let your supervisor or human resources department know that you are undergoing medical treatment. You may be vague, and only need to disclose enough that explains why you aren’t performing up to your usual standards. This disclosure may protect you from action that may cost you your job.
Decide what is best for you.
I lived with hepatitis C for more than 25 years, and have been completely open about it. I decided that I would rather live with the freedom of not feeling ashamed that I have hepatitis C. As a nurse, this was a huge risk, but one I have never regretted. Except for a few people, everyone has accepted me, and learned from me.
Talking about having hepatitis C is an act of courage, but if you aren’t ready to, you don’t have to.
To learn more about hepatitis C disclosure, check out the following resources at the HCV Advocate: