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Hepatitis C and the Power of Words

I have a friend who has post-polio syndrome. For decades, she has lived with incredible pain. She has seen many doctors, tried lots of pain management techniques and medications, and in the end, she is still in pain. Her least favorite question comes when well meaning friends ask, “How are you?” She has answered that question in the same way, many times, “I am in pain, and I am okay.” Then she gets “the look.”

If you have hepatitis C, you probably know what I mean by “the look.”  That’s when someone registers an expression that you interpret based on past experience with that person.  “The look” can have many meanings, such as:

  • “Oh, do you still have hep C? I thought you would have gotten over that by now.”
  • “Oh you poor thing. Have you tried x,y,z? Surely you have hep C because you haven’t tried hard enough to get rid of it.”
  • “Oh, I am sorry, but can we change the subject since I am completely uncomfortable with you having hep C, and since I can’t fix it, then I don’t want to talk about it.”

Having hepatitis C carries an extra complexity, since we don’t look sick. Tell someone you have hep C and they might remark, “I can’t believe it. You look so good!” Don’t you just want to say something like, “Hep C is a liver disease. It doesn’t affect my face. Do you want to see my liver?”

languageWouldn’t it be great if we could teach people how to talk to us? Perhaps we can. Here are some tips on how to talk to people who are sick or in pain:

  • Listen – Sometimes we communicate far more with sincere, attentive listening, than we do with words.
  • Offer support – You can give on-the-spot support, such as “I don’t want to pry, but if there is something going on and you want to talk about it, I’m happy to listen” or offer help, such as, “Is there anything I can do?” Don’t offer to help if you aren’t prepared to follow through with a “yes” or a firm, “I’m not able to do that, but I can do such-and-such.”
  • Relate – If you had similar experiences, and your intention is solely to show empathy, then it is fine to relate your experiences, as long as you aren’t trying to show one-upmanship.

Here is what not to do:

  • Don’t judge – Even if you think the person is exaggerating, remain compassionate
  • Don’t tell them about a worse experience – You may think it helpful to tell someone who is struggling through HCV treatment about how you scaled Mt. Everest without oxygen during your treatment, but it may make them feel inadequate and hopeless. Keep your experiences to yourself unless you think they will help.
  • Don’t tell them how to feel – “Get over it, you’ll be fine” is the last thing we want to hear when we are ill.
  • Don’t over-sympathize – Pity doesn’t help and it is demeaning.

Now that my hepatitis C is cured, I don’t get these questions as often. I still get asked occasionally, “Are you still cured?” question, which seems like a ridiculous question to me. I just smile, and say yes. What I really want to say is, “Yes, do you want to see my liver?”

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