Talking to Family and Friends About Hepatitis

Now that you have been diagnosed with hepatitis and are learning more about the virus, you may be thinking about whether you should share this information with family members and friends you trust. These are the people who know you best and care about you the most, but it may be hard for you to talk about having hepatitis, especially at first.

You may wonder how they will react: Will they think you did something wrong to get this disease, or will they just want to help you? Having friends and family who understand and provide support can make a big difference to anyone facing an illness like hepatitis. But making the decision that you trust someone enough to tell them about this problem can be tough. Once you have reached that decision, however, it’s important to be able to speak openly and give them good information.

Knowledge leads to understanding

Sometimes people are most afraid of what they don’t understand, and although millions of Americans have hepatitis B or hepatitis C, most people don’t know much about it. So, if you tell any of the most important people in your life about your diagnosis, tell them what you know about hepatitis, and show them materials like this handbook. It will be good for them to have more information, for several reasons:

– You may need their support and understanding, and some will be glad to give it. But people can’t help you if they don’t know about your condition, and if they don’t know enough about hepatitis.

– Because hepatitis B and hepatitis C can be spread through certain types of personal contact, it will be important for the people close to you to understand how hepatitis spreads. The more they know, the safer they will be, and the more comfortable they will feel around you.

– There are practical ways your friends and family members can help you: by helping with chores, errands, child care, or work. Sometimes you may need this help.

Deciding who to tell and what to say

Deciding who you talk to about this disease is an important decision: confide in people you can trust, who truly care about you and your health, and who can actually help you in facing the problems ahead. Be sure to allow enough time to answer all the person’s questions and concerns.

Hepatitis can be a frustrating disease to talk about because there is still much that we don’t know. You may test positive for hepatitis B or C but not have symptoms. Or, the symptoms may come and go. You may not know how you became infected. And you may have heard different things about how the disease can spread from person to person. You may fear that people will think you did something wrong, and that that is why you got the disease. But the most important thing now is that you take care of yourself, and most people want to help a friend or family member who is sick. Just as having more information can help you, sharing that information with people close to you can help them, too. Following are some things you can tell others:

РTell your loved ones how you were diagnosed. (See Chapter 5.) Explain that hepatitis is a disease of the liver. (See Chapter 2.)

РTell them about the symptoms you have ore can expect to have. Explain that you may be more tired than usual, feel sick to your stomach, have aching joints, lose your appetite, or even become depressed. Tell them that it may not always be the same; sometimes you may feel good, while other times you may feel very sick. (See Chapter 7.)

РIf you will be taking interferon, tell them about it. Explain how it may help you. Talk about some of the possible side effects, and what you can do about them. (See Chapter 6.)

Talking about their risk of getting hepatitis

Once you’ve had a chance to tell your friends or family members something about this disease, they will probably wonder what their risk of getting it from you is. We discussed how hepatitis is spread in¬†Chapter 4, and you can let others read this chapter if they have questions. But here’s a brief review of some of the first things you may want to tell someone about how to protect themselves against this illness.

– If you have hepatitis C, be sure to say that it is not very contagious, but that it is important to be careful about blood and not to share anything, such as toothbrushes or razors, that could carry even a tiny amount of blood. Tell them the virus is present in semen, saliva, and vaginal fluid, but that it is rare to catch it through sex, and it is unlikely that it’s spread through kissing. Rather, hepatitis C is almost always spread through blood-to-blood contact, such as through a blood transfusion, sharing needles used for injections, or sharing nose straws (used for snorting cocaine).

– If you have hepatitis B, say that it is a very good idea for anyone having close contact with you to get vaccinated against this disease. Mention how important it is not to share things that could have blood on them, and tell sex partners that you need to use latex condoms to protect them, because hepatitis B is more likely to be sexually transmitted.

Because hepatitis B is more easily transmitted than hepatitis C, it is doubly important for your own sake and the sake of your loved ones that you seek treatment and make sure you know whether your infection is active. Whatever type of hepatitis you have, talk to your doctor about what he or she thinks your family and friends’ risks are of getting the disease from you. And if you have special concerns, such as protecting a boyfriend, girlfriend, or a toddler (who might play with a used tissue or other objects that have your blood or other body fluids on them), ask your doctor about things you can do to reduce their risk of getting the disease.

Because to tell your family and friends that no type of hepatitis is spread y casual contact, such as holding hands, hugging, or sharing a meal together. If you explain this clearly, your family and friends should be comforted. If they have other questions about how they may be at risk, suggest that they read Chapter 4 of this handbook, have them talk to your or their own doctor, or check the Resource List for other sources of information.

Getting a helping hand

Having to tell people about your condition and wondering whether they will care enough to try and understand can be scary. But it’s a very important and rewarding step when your family and friends learn about something as important as this, and you realize you have people who are willing to help you.

For one thing, having someone to talk to who understands what you are going through will be a big help to you emotionally. (See¬†Chapter 9.) But there are also practical reasons for telling someone you trust and can rely on about your condition. Family and friends can help you with daily concerns such as household chores, doctor’s visits, eating healthy foods, avoiding alcohol, and making sure you have the medications you need on hand.

In particular, you may need help taking care of your children if your symptoms are severe.

– Think about your child care needs, both everyday and emergency. Then decide if you can ask some nearby friends or family members if your children can stay with them if you suddenly become ill.

– Make sure that the emergency – contact information at the offices of your children’s schools is up-to-date.

– Make sure that you explain your illness to your children in terms that they can understand, depending on how old they are. (See the Dialogue Box on page 73.) You should think about the same for anyone else, such as an elderly parent, whom you are taking care of now.

– Also, you may want to make arrangements for someone to take care of pets or other possessions, such as plants or valuables, that are important to you, if you are unable to do so for a length of time.

If you feel you will need a lot of help, seek it out. Look into resources you may have, such as local agencies, support groups, or the members of your church, temple, or synagogue. Don” be shy about telling your pastor, priest, or rabbi about your illness. He or she can pray with you, give you advice, and help you come up with good plans for the future.

Telling someone you have hepatitis may seem tough, but picking the right people to tell and giving them good information may help you. However, you also must consider how your illness will affect your ability to support yourself. In¬†Chapter 11, you’ll get information and advice about this very important issue.

Q U I Z

Q. Is hepatitis a well-known and well-understood disease?
A. No. Few people know much about this disease, although it is very common.

Q. What are the main reasons to tell close family and friends about your diagnosis?
A. They can provide emotional and practical support (such as helping with errands), and they need to know about your diagnosis to protect themselves.

Q. What questions should you ask yourself before telling someone that you have hepatitis B or C?
A. 1) “Is this someone that I truly trust?”;
2) “Is this someone who truly cares about me and my health?”; and
3) “Will telling this person help me?”

Q. Why is it especially important to tell someone you are close to about your hepatitis B infection?
A. Because hepatitis B is highly infectious, and because there is a good vaccine that can be given to protect people at risk from this disease. If you are having sex with this person, you need to be extra careful, and always use latex condoms.

ACTION STEPS

– Think very carefully about who you will tell, and why. Make sure that telling them will help you, rather than cause new problems.

– Tell them about the diagnosis, treatment, and symptoms. Show them Chapters 5, 6, and 7 of this handbook, which cover those topics, if they want more information.

– Discuss the ways the disease can be spread and precautions you’ll need to take.¬†Chapter 4¬†discusses the spread of the disease and may be helpful to them.

– Discuss ways that having hepatitis B or C may affect your life in particular. What kind of problems do you see ahead, and how can your family and friends help you?

– Answer any questions people may have about your illness, and share other sources of information, such as this handbook and the Resource List at the back of this book.

– Find out how a close friend, family member, or pastor, priest, or rabbi can help you now, before you are faced with an emergency and have no one to turn to.

Dialogue Box: TELLING A CHILD YOU HAVE HEPATITIS B OR C

Adult: Honey, I went to the doctor and have some news. My liver is sick with something called hepatitis.
Child: What does that mean?

Adult: Well, it means that there may be times when I feel sick. I will have to try very hard to be healthy, and I will have to take medicine the doctor gave me.
Child: What kind of sick?

Adult: Well, sometimes I might be sick to my stomach, like I have to throw up. Other times, I may just be very tired.
Child: Could I catch it?

Adult:¬†You shouldn’t have to worry about that. It’s not like a cold or sore throat; you won’t get it if I cough or sneeze. The sickness is only in my liver and my blood, so I’ll just have to be careful if I’m ever bleeding. And other people shouldn’t use the things I use in the bathroom, like my toothbrush, razor, or nail file. But we should all just use our own things, anyway. ?
Child:¬†I’m scared, are you going to be OK? Are you going to die?

Adult: I should be OK. I will probably feel bad sometimes, and I will have to take very good care of myself, but there are things I can do to help myself feel better.

Dialogue Box: TELLING A BOYFRIEND OR GIRLFRIEND YOU HAVE HEPATITIS C

You: I need to talk to you about my visit to the doctor. I have hepatitis C.
Your Friend: What does that mean?

You: It means my liver is damaged, and I could end up with some severe symptoms, such as fatigue and pain. Or I could be fine for a long time.
Your Friend How did you get it?

You:¬†I’m not sure. It’s very frustrating. At some point, I came into contact with some infected blood. You can get it from a needle, or from a tool for tattooing or piercing that isn’t clean. It could even come from a nail file or toothbrush with just a trace of blood on it. You can get it from blood transfusions, too, or sometimes from sexual contact.
Your Friend:¬†I’m afraid, do you think I have it, too?

You:¬†Well, you will probably want to be tested. But there’s only a slight chance that you have it too. Most of the time, people who are steady and committed sex partners don’t get hepatitis C. It travels through the blood and some body fluids, like semen and vaginal fluids, but it seems that it is almost always spread by blood-to-blood contact, like when you get a blood transfusion or share needles. If you want, we can use condoms for extra protection.
Your Friend: What am I going to do? I could have a sexually transmitted disease.

You:¬†I know it seems scary but it’s actually a disease of the liver, not a sexual disease. Sex is one way it might be spread, but the main way is through blood. I have to be careful about anyone, including you, coming into direct contact with my blood. I have to be careful with razors and toothbrushes, things like that. And I’ll be taking medication, trying to eat healthy and not drink, and going to the doctor regularly.
Your Friend: Should I be taking drugs too? Is there something I can take?

You:¬†There is no vaccine for hepatitis C yet, and drugs to treat hepatitis won’t do you any good unless you are already infected. But we’ll make sure you’re not infected and then you can help remind me to take my medicine and take care of myself. And we just have to be a little careful.

(* Note: If you have hepatitis B, speak to your doctor about the risks of spreading this disease to loved ones, because it is more easily passed on than hepatitis C.

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