Hepatitis C and beyond: Never a dull moment
Telling Others We Have Hepatitis C
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“If you reveal your secrets to the wind you should not blame the wind for revealing them to the trees.” – Kahil Gibran
It can be hard to live with hepatitis C, but telling someone else you have it takes monumental strength. I’ve been open about having hepatitis C for so long now, that sometimes I forget how stigmatized hepatitis C is. On a recent flight, I struck up a conversation with a passenger. After asking me about my work, he wondered how I got interested in hepatitis C. I told him about my diagnosis, and eventual cure. I watched him pull away from me, removing his arm from the armrest. With wide eyes he asked, “Are you sure you don’t have it?” “Yes I am sure, and even if I did have it, hepatitis C is not passed casually.” For the rest of the transcontinental flight, his arm never returned to the armrest.
Stigma is the worst part about living with hepatitis C. I know of people in small communities in the U.S. who are virtually ostracized because the word got out. Living with hepatitis C is hard enough, without also having to endure shame and social isolation.
I don’t like living with secrets, so when I decided to be open about my hepatitis C status, it was liberating. This worked out well for me, since the majority of people in my life are accepting and kind-hearted. However, other hepatitis C patients have suffered at the hands of fear, misinformation and harsh judgment.
If you are thinking about disclosing your hepatitis C status, consider the following:
You are not legally required to tell anyone that you have hepatitis C.There may be a moral obligation to tell others who might be at risk, such as sex partners, but no legal one. The sexual transmission risk is very low, but telling someone that you have hepatitis C after you have slept with him or her betrays trust. Put yourself in their shoes and act accordingly.
Know how hepatitis C is transmitted.Hepatitis C is the most common blood-borne virus in the U.S. Hepatitis C is most commonly spread via shared injection drug use, 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 I tell someone I had hepatitis C, the next question usually is, “How did you get it?” If you are uncomfortable with telling others how you acquired hepatitis C, then don’t. It is enough to say that you aren’t sure, because few of us are ever really 100% sure.
Telling others that you have hepatitis C, takes a little preparation.
If you tell one person, be prepared for others to know.Humans gossip, and when we do, we don’t always blab the same story.
Use extreme caution when telling coworkers.In general, workplace disclosure of hepatitis C status is unnecessary and potentially risky unless hepatitis C interferes with your ability to perform your job. For example, hepatitis C treatment may hinder your ability to work, so it is 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 to explain 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.Talking about having hepatitis C is an act of courage, but if you aren’t ready to, you don’t have to.
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