April Fool's Column

Here is a reprint of my April 2013 column appearing in the HCV Advocate:

It's April, the month that has my favorite unrecognized holiday—April Fool's Day. Long-time HCV Advocate readers know that April is when I let loose my hepatic humor and jaundiced jokes. April is when Alan Franciscus rolls his eyes and wonders if Dave Barry might be available to write future columns.

Pondering my April column, I wondered if I had run out of humorous things to say about hepatitis. I might be forced to make gall bladder jokes. However, I got a big break: Stanford informed me that I qualified for an interferon-free hepatitis C clinical trial. I felt like I hit the lottery. Let's face it, nothing is more hilarious than me on hepatitis C treatment.

I told my colleagues at The Advocate and naturally, they were all happy for me. However, I noticed little hints of concern. One person mentioned that she'd be sure to double check my work. Someone else asked me to look at a project before I went "gaga" from the medication. I assume he meant lose my mind, rather than start wearing Lady Gaga outfits. I've never looked good wearing meat.

These are my dear friends and humor is as much a part of our work together as hepatitis C advocacy is. They all have or have had hepatitis C. They know me, this disease, and the rigor of treatment. More importantly, they know what to say and not to say to someone who has hepatitis C. Unfortunately, unless you have hepatitis C, and most especially if you have been through treatment, it is hard to know what to say to someone with this disease.

This month, I present my "Ten Things Not to Say to Someone with Hepatitis C" and "Ten Things to Say to Someone with Hepatitis C" lists. In the spirit of full disclaimer, ribavirin is setting in, so if I sound caustic, it is because I am.

Let's start with ten things not to say to someone with hepatitis C, especially if they are going through treatment: 

1. "That is a really nasty looking rash." Yes, we get nasty looking rashes, but we are hoping it doesn't look as bad to you as it does to us. Pretend you don't notice it.
2. "Should I call 911?" Sometimes we look and act as if we are on death's door. We may get light-headed or have shortness of breath after walking up a flight of stairs. However, we are more resilient than you think we are. However, if we have chest pain, call 911.
3. "Your problem is that you aren't a positive thinker. If you change your attitude, you would feel better." Excuse me, but I am positive. I am positive that if you knew what I was feeling, you wouldn't say such a stupid thing.
4. "Try this herbal drink—Liver Detox—I know people who cured hepatitis C with this stuff." I appreciate your concern, and I wish that there were a miracle cure. However, don't you think that if Liver Detox worked, that venture capitalists would have bought the company by now?
5. "If you just got some exercise, you would feel better." This is probably true, but I don't want to hear this unless it comes from other patients. 
6. "You are so lucky that you can take time off from work and stay in bed all day." Would you like to switch places?
7. "Are you losing your hair?" No, I am simplifying my life by trying to get rid of some of excess hair. 
8. "My (insert relative) had hepatitis C, and he/she was cured by a psychic healer." This may or may not be true, but in either case, it isn't helpful. We all make our own choices about how to manage hepatitis C. My choice is to try antiviral drugs. I am not sure what your intention is when you tell me that a relative chose another path, but it feels like you may be criticizing my choice. 
9. "You must be feeling better, otherwise you wouldn't be here." Sometimes we push ourselves. We don't feel better, but we are sick and tired of feeling sick and tired, so we force ourselves to show up for work, social events, and other activities. Don't assume that because we do these things we are feeling good.
10. "You look really good." We feel awful and when you say that, are you suggesting that we are lying about our health? If you want to cheer me up, it is best not to say anything about how I look. 

Ten things to say to someone with hepatitis C, especially if they are going through treatment:

I imagine this is hard. How can I support you?" Many patients may not have a direct answer for this, but we like to be asked this question.

1. "You look better than I thought you would, but looks can be deceiving. How are you feeling?" Feeling unwell is complicated. We want to look attractive, but not look so good that you can't tell that we are sick. By phrasing the question this way, it allows us to tell you how we are feeling and soothes our need to look attractive.  
2. "I'd love to bring lunch over, but only if you feel up to it. If we get together, promise me you won't clean the house. I will only stay 30 minutes." This is concrete. The patient is off the hook, you will provide the food, and you set a short time limit on the commitment.
3. "When I am at the store, may I pick up some groceries for you?" This tells me that you aren't going out of your way, and makes it easier for me to accept the offer.
4.  "Do you want to talk about how you are doing, or would you rather we talk about something else?" Sometimes we feel ignored when no one asks how we are doing, but sometimes we'd rather be distracted by talking about other things.
5. "I made some extra soup. I'd like to bring it by later. If you don't want it now, you can always freeze it." It's hard to say "no" when it's put this way.
6. "Just emailing to let you know that I am thinking about you and I hope your treatment goes well. No need to reply." It feels good to be thought about without having to answer an email.
7. "I am free on Thursday. How about I come by to help with the laundry or run some errands." We are proud, and often reluctant to accept help. Stated this way, I might accept the offer.
8. "You are amazing." We feel so bad, that we forget this simple truth. Anyone who has hepatitis C or goes through its treatment is amazing.
9. "Do you want to hear a great joke?" This won't work for everyone, but it is a surefire way to make me feel better.

This is the third time I've gone through treatment, and I know it is hard on family and friends. They don't know what to say, so I try to be patient. My patience is running thin, so I just might give them these lists.