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Chronic Disease: The Invisible Illness

People with chronic disease often look healthy — making their struggle frustrating and lonely

Earlier this year, a long-overdue meeting took place between chronic illness advocates and White House officials about the flood of chronic conditions threatening our collective health. It was about time.

See also: 7 pain-fighting foods.

Richard Cohen

Courtesy Richard M. Cohen

Richard M. Cohen was diagnosed with multiple sclerosis more than 30 years ago.

As recently as six years ago, the National Center for Health Statistics, a division of the Centers for Disease Control, estimated that 90 million Americans lived with at least one chronic illness. Some argue that literally half the population — roughly 150 million of us — deals with some sort of chronic condition.  How do we account for such rampant growth? The most obvious explanation is that the vast cohort of baby boomers — those born between 1946 and 1964 — is aging, with the first boomers turning 65 this year. Eighty percent of all people over 65 have a chronic condition. 

Another factor is that more illnesses, including some cancers, used to be killers. But extraordinary advances in medicine allow doctors to treat them, and now they are considered chronic. Chronic illnesses by definition are incurable, but often they can be treated, with symptoms kept in check. 

As a result, vast numbers of us live with chronic illnesses, and our needs are too little understood. Often, our illnesses or disabilities are invisible to the world around us.  That may be why some people do not really believe we are really sick. But you look so good, becomes our inside joke. Our warm smiles and rosy cheeks belie the seriousness of whatever ails us.  People want to believe we are healthy, and if we look the part, then how bad can things be?

Sarah Levin Weiss, who was profiled in my book Strong at the Broken Places, is a case in point.  Sarah has Crohn’s disease, a ghastly degenerative condition that can ravage the digestive tract.  Sarah has been on regular oral steroids for much of her life. “But my cheeks are rosy and my face round, and others think I am the picture of health,” she once told me, long ago. 

Next: How is Sarah doing today? >>

How is she today? “Well, I’m six months pregnant, and people say I am glowing,” Sarah told me recently.

When I heard this, I was shocked and elated. Sarah and her husband had been trying to conceive for some time. “And I have been having problems with my stoma,” she added.  Sarah has an ostomy, and the stoma is the flesh tube that connects belly and bag. “I constantly look down and see it and realize I will have this for the rest of my life. I hope that having a kid makes me feel normal, positive instead of negative.”

Chronic illness is a private hell. Our lives are altered, our strengths and abilities diminished. Sometimes we need special access to buildings and transportation. Some of us need extra time or attention to perform life’s little tasks. We endure a constant need to explain, to educate and convince others that we’re not more trouble than we are worth.

Jennifer Jaff, an attorney who heads up the group Advocacy for Patients with Chronic Illness, argues that ignorance and squeamish reactions to the sick stem from a fear that illness can strike anyone at any time. “We represented a 20-year-old woman with intolerable pain from head to toe,” Jaff told me. Her insurance company had cut her off. Two of three doctors did not support her appeal.

What people need to realize is that we are not talking about nameless, faceless persons down the block or around the corner. If we are lucky enough to enjoy good health, a family member or friend, neighbor or colleague is anything but.   

Jennifer Jaff gets it, because she lives it every day. Jennifer, like Sarah, lives with Crohn’s disease and a painful inability to digest food, accompanied by chronic nausea.

But people can’t see her sickness. It’s not a broken bone. We can’t see heart disease either, or diabetes, neurological problems, or pulmonary disorders. Diseases of the mind are rarely obvious. And we are not looking anyway. 

Emmy-winning TV producer and author Richard Cohen has lived with multiple sclerosis for more than 30 years. He writes bi-weekly about living a full life with a chronic disease.