You Don't LOOK Sick!
Have you ever heard this? “Why, you don’t look Sick!” If you have an invisible chronic illness, you’ve likely had this or something similar said to you. There are other common comments. “My sister has ----, and she went on this ---- diet that really helped her, have you tried that diet?” Or, “I think illness is God’s way of teaching us a lesson, but he never gives us more than we can handle.” Or, “Maybe your illness is really a psychological problem, how’s your marriage?” Rather than offering compassion, sometimes people offer a fix, a judgement or just keep their distance.
In simple language a chronic illness has an uncertain cause, no known cure, has lasted over 3 months, may last a lifetime and will not necessarily cause premature death. The symptoms often include pain, fatigue and memory loss or ‘brain fog’, all of which are invisible symptoms. Understandably, anxiety and depression are also common among these patients. More than 125 million Americans are diagnosed with these disorders and 40 million are limited in their daily activities. With so many Americans living with illness, why is there such resistance and insensitivity to this population’s reality?
I liken it to the way people react when a person is getting divorced. Often, they move away from someone who was their friend. Or they lay blame or make it all black and white. They become very uncomfortable and don’t know what to say, so offer nothing. When I was going through a divorce, I felt some people acted as if I was contagious. As if what was happening to me could also happen to them if they got too close. I had similar reactions when I was diagnosed with multiple, overlapping and invisible chronic illnesses.
After my physician, Dr. Steve Overman, and I published our book You Don’t LOOK Sick! we travelled the country speaking to patient organizations representing a variety of invisible illnesses, some of which I’d never even heard of. We tried to offer these audiences a hopeful pathway to building a meaningful life, even if it contained illness and shared ways to make peace with their illness, rather than exhausting themselves fighting it. I heard many similar stories from these patients—of not being believed, of being dismissed, marginalized, criticized and judged—by friends, family and physicians. So, I have a suggestion.
I recently got an email from Carmen Jacob, the Editor in Chief of UpJourney, a web site that encourages each of us to be our best self and offers many resources to support this, including articles, books, gifts, quotes, and web links on many topics. She wanted me to know that You Don’t LOOK Sick! had been included in an article citing The 11 Best Books for Living with Chronic Illness or Chronic Pain, by Amy Orr, another author writing on this subject. I am familiar with most of these books and know they can help. Might I suggest you take a moment today, copy this link, and send it to a person you know may benefit. In addition to providing practical and informed resources, you will be acknowledging their reality and offering your support.
“Thinking of you and thought you might find these books helpful. I hope you have a good day!”