—Lucinda K. Porter, RN

Sometimes well-intended words can cause pain, which brings to mind a story about my mother. She had a blood disorder that eventually converted to leukemia. When it was clear that nothing more could be done, she broke the news to friends. One replied, “I can’t believe it. You look so good!” My mother was annoyed by the remark, noting that it was insensitive. She said, “How am I supposed to look? Do people think I am making this up?”

This is the nature of illness. Sometimes people don’t look sick even when they are gravely ill. People with chronic hepatitis C virus infection (HCV) frequently express that no one knows how lousy they feel, because on the outside they appear well. This is especially true when patients go through HCV treatment. The prevalence of this was evident in my HCV support group after we confessed how irritating it was when people remark, “You look so good.”

These comments are well-intended, but simultaneously invalidating. I recall late in my treatment, someone saying to me, “You don’t look sick.” My hair was thinning, my fingernails ghastly, and I had a nasty, visible rash. I was nauseous, depressed and irritable. It took every ounce of restraint not to say, “And you don’t look stupid or careless.”

We tell people they look good in order to encourage them, rather than to question their health. It is a way of expressing admiration and support when someone is going through turmoil. Perhaps if we tell our sick friends that they look good, they will be lifted out of their misery.

Denial may be at play here. We don’t want to see our loved ones suffer, so we accentuate the positive. In my mother’s case, you’d have to be legally blind to miss the fact that she was on oxygen, bruised, weighed less than Calista Flockhart, and was so anemic that her skin looked like chalk. Did I tell my mom that she looked horrible? Of course not, but neither did I tell her she looked good. I told her I loved her and stayed away from conversations about her appearance.

When I was on HCV treatment, I assume that people didn’t notice that my skin looked like a plate in a dermatology textbook, or that my hair had lost its shine. Instead they noticed the weight loss and my slimmer body, so naturally they complimented me. Unfortunately, HCV medications were messing up my thinking in addition to my skin, so I reacted defensively, when I should have said, “Thank you.”

Sometimes we conceal how we feel. Susan Milstrey Wells, author of A Delicate Balance: Living Successfully with Chronic Illness, examines some of the complexities of living with a chronic illness. She points out that society values beauty, strength, and productivity. When we can’t live up to those standards we may blame or shame ourselves. When asked, “How are you?” Milstrey observes that we’ll often reply that we are fine—even if we aren’t.

We may have good reasons for not wanting to admit that we don’t feel well. It may be inappropriate in social or professional situations to be overly honest. President George H.W. Bush probably didn’t tell the Prime Minister of Japan that he wasn’t feeling well before vomiting on Miyazawa. We expect our president to be invincible; we don’t want to see him sick, and he is unlikely to admit as such.

Although we aren’t heads of state, we may not want our bosses, neighbors, or casual acquaintances to know that we have HCV. We are vulnerable when we are ill and admitting we are sick makes us feel more vulnerable. Acting like we are fine is a way to exert control in a situation over which we feel powerless.

Milstrey believes that it takes courage to admit being unwell, but we don’t need to tell the world. She writes, “When we accept the fact that we’re sick, it’s less important that everyone else does, too.”

Admitting we are sick is one thing, but sick with HCV is another. HCV is a communicable virus, and somewhat stigmatized. It’s best to think about it before disclosing one’s HCV status. If you do disclose, start with close friends and those who will not announce it on Facebook.

I am comfortable telling people that I have HCV. When I went public with it there was no turning back, especially since the HCV Advocate’s website gets more than a half million hits every week. However, I rarely tell people when I don’t feel well. This information I only share with those close to me. I don’t like the fuss that comes when people know I feel poorly. When I am under the weather and people ask me how I am, I say, “Hanging in there,” a response that Milstrey endorses.

If someone says you look great when you’ve admitted feeling awful, Milstrey says, “Looking good while feeling bad takes talent!” and she proposes simply saying thank you. If they express that you look far too good to be feeling sick, then Milstrey suggests, “Yes, it’s even hard for me to understand how I can feel so bad when I look so good.”

The other side of this equation is how we talk to others when they are ill. It would be simple if we could speak to others as we would want them to speak to us, but we are all so different.

Let’s start with 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.


Here’s what you can do instead:

* 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.

No matter which side of the thermometer you are on, we can choose words that inflict pain or soothe the soul; it just takes awareness, thoughtfulness, and practice.

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