People are genuinely curious, however regarding a chronic condition, questions can often times come off as ignorant or insensitive. It’s important to remember especially, that when it comes to your family and friends, they probably mean well. Sometimes it’s just difficult in knowing how to be helpful or knowing what to say.
Below we share some of the comments and questions our patients have received, along with how to make conversations around hepatitis C more constructive.
I honestly don’t know how I got hepatitis C. I never used IV drugs or anything, and I was only 16 when I got first diagnosed – and still a virgin, in case you wonder. My mother kept telling me: ‘You know that we love you and we won’t judge you, why won’t you tell us?’
I know that she meant well, but it was still very disturbing. It’s like if she implied that I was not telling the truth! It’s been over ten years since, but sometimes I think she still suspects that I was doing drugs when I was in high school.
– Matthew, New Jersey
‘This must be really hard for your dating life!’
It’s a common misunderstanding to believe that people with hepatitis C can’t be in a normal relationship. Strictly speaking, hepatitis C is a blood borne disease, not an STD. The studies show that there is no need for condom use in a stable monogamous relationship where one of the partners is hep C positive. Of course, if it comes to spontaneous intercourse with a random partner or to a particularly damaging sexual practices, the use of condoms is highly recommended, regardless if the partner has hepatitis C or not.
There is nothing more particular about dating a person with hepatitis C than, let’s say, a person with diabetes. Certain rules should be exercised, and with hepatitis C, as long as very basic hygiene rules are followed, it presents no real danger. And as with any other chronic disease, it’s important to be open and honest while being aware that our partner could be sensitive about it. We should also be prepared to learn about it and to show some support.
‘You know, I’d be happy to be there for you. Is there anything I can do to help?’
‘You look just fine to me!’
Just because someone looks fine doesn’t mean that they feel fine! Hepatitis C can cause, among other symptoms, nausea, sore muscles, joint pains and extreme fatigue.
Even if hepatitis C patients often stay symptom-free for a long time, it is nevertheless a very serious disease! About three quarters of infected people develop chronic hepatitis that damages the liver as it progresses. Among potential consequences are cirrhosis, liver failure and liver cancer.
Imagine living with the disease that you know is destroying you from inside! A person infected with hepatitis C may feel really down just thinking about it! Saying that they look fine is almost like saying that their condition isn’t worth mentioning; it is rude and uncaring, to say the least.
If your friend looks fine, that’s great! Now if you want to show some genuine support, ask how he or she is feeling.
‘I heard that oftentimes hepatitis C doesn’t have symptoms. Are you okay? How do you feel?’
‘Is it contagious?’ or ‘Aren’t you afraid that you child (your wife) might get it?’
Hepatitis C can’t be transmitted through casual contact like sharing spoons, shaking hands or sneezing. The virus is only transmitted through exposure to infected person’s blood, so transmission between friends or relatives is really rare.
Though hepatitis C is passed through blood, the virus can live in blood outside the body. At room temperature, the virus can survive up to four days, making even traces of dry blood potentially infectious. For this reason, razors and toothbrushes should never be shared with a person who has hepatitis C. And because there are so many other diseases – viral or bacterial – razors and toothbrushes should never be shared, period.
In my family, both my father and his twin brother had hepatitis C for nearly 20 years. Both were born before 1965 and both were paramedics in ER, so they’re actually in the risk group twice. I didn’t get it from my father – but you might argue that I didn’t grow up in the same house with him. Well, my mom, my stepmother and my aunt didn’t catch it, nor did any of my two stepsisters and three of my cousins.
– Kate, Belgium
People with hepatitis C are normally very aware of that and try to be very careful about accidentally exposing somebody else to their blood. It can be a depressing and worrying thought sometimes, so it’s better to avoid mentioning it in a conversation. Instead, show you friend or loved one that you are eager to learn more about this health condition, because you truly care.
Say, ‘I don’t know enough about hep C, but I’d like to learn more. Do you know a reliable information source?’
And of course, if anyone at all ever offers to share nail clippers, a razor, a toothbrush or a needle with you, just say: ‘Thanks, but I’m so picky when it comes to hygiene! I just don’t feel that it’s okay to share these things.’
‘Where did you get it from?’
Getting infected with hepatitis C is a very personal matter. Today, the most common way of transmission is believed to be intravenous drug use. Careful though, it only means that nowadays we are finally able to take all the measures to prevent other ways of transmission! Sadly, it was not always the case.
Hepatitis C is the most common blood-borne virus in the United States, with more than 3 million people infected. Just think about it, if only intravenous drug users were concerned, that would have been an alarming number, wouldn’t it?
The stigma surrounding hepatitis C makes the life of a person suffering from it even harder. But there is nothing to be ashamed of! Your friend might have received donor’s blood or blood products before 1992, when routine blood testing was introduced; or, he might have gotten a tattoo or a piercing from his college roommate. Maybe it was from transfusions in the NICU or from stitching a deep childhood wound some thirty years ago. Even today, the accidents in a healthcare setting – like needle sticks or getting in contact with used bandages – can still occasionally happen.
In many of the cases – and that is quite scary – the person diagnosed with hepatitis C has no idea where it comes from! So don’t make it worse by asking! It’s better not to mention it at all. And if you think that the conversation is heading this way and touching the subject is unavoidable, better say: ‘How did you find out that you were positive? It must have been really shocking for you!’
‘Isn’t there a drug for that?’ or ‘Why don’t you get rid of it?’
Chances are, if your friend isn’t cured yet, this is not because he or she doesn’t want to!
Hepatitis C is a virus, and for many years its treatment was very difficult and not very effective. Luckily, with the latest scientific progress efficient hepatitis C drugs finally exist. Today, we know that hepatitis can and should be treated, and the sooner the patient starts the treatment, the better the outcome will be.
Unfortunately, the situation with the treatment is still not straightforward. The new antiviral drugs are extremely expensive, and your friend might either not be covered under his insurance plan, or simply not be able to pay the out-of-pocket part of the treatment bill.
Instead of pointing out bluntly that the cure exist, it’s better to mention that you heard about different affordable treatment options, such as Gilead Co-pay Coupons, Obamacare and even medical tourism.
‘I did some research online, and these new hep C drugs are very effective! There are also affordable ways to get this new treatment. Have you heard about them?’
This will show that you did some research about the subject and that it matters to you. Most importantly, it can motivate your friend to do his or her own research and find the treatment option that is available.