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When Illness Is Invisible


Is your illness invisible?

Last week in Words that Wound, Words that Heal, I wrote about how we sometimes pay a compliment to people who are sick by remarking on how well they look, and it backfires. This week I want to talk more about the invisibility of illness, specifically on our tendency to 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 aren’t in tiptop shape. 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 an infectious disease is another. Some viruses, such as hepatitis C and HIV are stigmatized.  It’s best to think about it before disclosing one’s status. If you do disclose, start with trustworthy family and friends, and not someone who will announce it on Facebook.

I was comfortable telling people that I had hepatitis C, but when I went public with it there was no turning back. However, I rarely told people when I didn’t feel well, unless they were 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.”

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  • Larry Gold January 26, 2017, 10:01 PM

    Sorry to hear of your difficulties. Changing the body’s sodium balance isn’t easy because reduced intake almost immediately leads to the dramatic decrease of sodium in the urine. To get the benefit that salt restriction promotes, the body needs to be in net sodium deficiency…not easy to do or maintain. Can’t argue with your success. Good luck.

    • Lucinda Porter January 27, 2017, 10:50 AM

      Thanks Larry – My labs seemed to indicate that I dramatically overshot my target (with the help of HCTZ). Doc was shocked. Still tinkering.