I just got diagnosed, how do I tell my family/friends?
As you sit in your doctor’s office or clinic after a positive hepatitis C diagnosis, your first instinct may be to run to a trusted friend or loved one. However, it’s important that you take a moment to collect yourself.
Try to listen to what the healthcare provider is telling you regarding your test results and what happens next. Ask if you can record the conversation on your phone if you think you may wish to listen to the information later. Ask questions and write down the answers. Accept any pamphlets, leaflets, or other information you are offered.
Often, people are surprised by their diagnosis and, as many people go to their appointments alone, you may realize later that you have more questions. This is very typical and completely okay. If you are able to take some time to process the news and to obtain the information, you may be in a better place to discuss your diagnosis with your loved ones.
What do I say when I am still scared?
It is okay to be scared, especially in the moments, hours, and days immediately after a diagnosis. In the time of the internet, you may be tempted to surf the web, thinking you’ll learn more. Although you may add to your body of knowledge, you also run the risk of reading tons of personal non-scientific blogs or sales websites that will try to convince you of untrue information. If you are not yet in a place where you can discern fact from fiction, wait to go online.
It may help you to journal or to make a list of questions or fears that you have. You can contact your healthcare provider to discuss these. You may find out that the fears are unfounded or you may find out that there are options to discuss and ways to minimize your concerns.
I’m ready to talk to my loved ones. How can I prevent them from judging me?
Ask to sit down individually or in small groups. Be calm and allow each person to ask whatever questions they may have. Be prepared to give them the information your doctor gave to you or feel confident enough to tell them that there are some aspects of this process that you prefer to keep to yourself.
Remember that, though you have had time to process this information, your loved ones may feel very surprised or even shocked. They may ask questions that seem rude or intrusive. It is okay to refuse to answer them, but keep in mind that they may not know they are asking something offensive. They may even make assumptions that are not true about you or about ways in which a person contracts hepatitis C.
Try not to get defensive, but instead, educate them. You can share generalized information about what hepatitis C means and how it is treated, or you can choose to share your personal story of how you became infected (if you know), what led you to request to be tested, and how the experience has impacted you.
Keep in mind, the words and questions from your loved ones may also be coming from a place of worrying about you. It might help to tell them that hepatitis C is a slow-progressing virus and that there is a cure for it. It may help them to hear that the risk of transmission to loved ones is very low and they should not be afraid to be around you or to hug you – nor should they assume you have given them the virus if they have been around you in the past.
It can help them to hear you talk about how you and your doctor plan to proceed in your treatment. Again, it is up to you to decide whether to share your medication list or your liver function test results, but if you choose not to, you may wish to let people know about the side effects you may be soon experiencing or limitations you may have.
For example, you may decide to tell your family that you will no longer be drinking alcohol because alcohol speeds the replication of the virus and impedes the absorption of most hepatitis C medications. You may ask your friends to consider alternative places to gather if your social life together has revolved around drinking. You may ask your partner about letting you know if your skin begins to yellow because they are someone who sees you most often. You may ask a roommate or parent to help you to learn to cook foods enriched with the vitamins most helpful to someone wishing to protect their liver.
What about my partner?
You may decide to have the same conversation with your partner that you did with other loved ones, or you may choose to tell your partner first. Either way, your partner will likely have the same questions and concerns as others who love you.
In addition, your partner may be concerned about whether they have been exposed to the virus. You may wish to offer to go to the clinic with them to help calm their nerves and so they can become aware of their own status.
After their concerns regarding their safety and yours have been discussed, you might want to include them in your treatment plan. This may include asking them to go with you to medical appointments or helping you to remember to take medication on time each day. If you are uncertain how to discuss this with your partner or whether your diagnosis means your partner is at risk, talk with your medical care provider.1-5
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