The Ministry of Lisa Copen

Lisa Copen, Founder of Rest Ministries which serves the chronically ill, shares about mothering, illness, ministry and more.

ARTICLE: Invisible Illness – It’s Not in Your Head


Invisible Illness – It’s Not in Your Head
By Lisa Copen

Living with an invisible illness can be frustrating and discouraging, as we try to discover why we have these emotions ad want our illness to be validated. Learning to live with chronic illness effectively means finding ways to let people’s comments slide off us without giving us heartache.

Did you know, nearly 1 in 2 people live with a chronic illness or condition, according to the National Invisible Chronic Illness Awareness Week? Ninety-six percent of these illnesses are invisible, meaning no cane, crutch, wheelchair or other assistive device is being used.

“But you look so good!”
“I can tell you must be feeling better. You look great!”
“I’m so glad you were able to come. Thank goodness you finally are getting some relief.”

To a healthy person, none of these comments seem unusual or insincere. Our friends are simply trying to find the right thing to say. Of course, they really do believe that we must be feeling better or we wouldn’t be out of bed. Those of us who are ill, however, understand that if we stayed in bed until we felt better, we would never leave the bedroom and we would miss out on life. So we get out of bed. We go on. We go out.

+ “But You Look So Good!”

Once we are out and about, people assume that we woke up feeling wonderful, that we jumped out of bed and are without pain. Donoghue and Siegel, authors of “Sick and Tired of Feeling Sick and Tired,” says, “An added difficulty in adjusting to being handicapped with invisible chronic illness (ICI) is the phenomenon of appearing well.”

+ Sometimes We Want to Appear Normal

Many chronic illnesses are invisible, causing feelings and frustrations that are different than what a person with a visible condition may experience. “It seems that we all want to appear normal. We all want to give the impression of strength, health and vigor,” shares Camille Lewis, a graduate student at Indiana University who lives with Cushing’s syndrome. “I’ve debated and debated about getting some walking help–a cane or whatever-and the one thing holding me back is my ego. I don’t want to appear to be in pain. I want to be normal, even though I’m not.”

+ Sometimes We Want People to Acknowledge the Pain

One would believe that pain would be socially understood and somewhat sympathized with. Although people do sympathize with pain, it is under circumstances that we believe are severely painful, such as childbirth, trauma, late stages of cancer, etc. People cannot relate with the chronically ill since the individual is not screaming, crying or grimacing. We, who live with chronic pain, often walk, talk, and function normally (as far as can be seen) so it is assumed that the pain is overstated. Migraines, for example, are often misunderstood as being just a bad headache.

A recent Dear Abby column featured a letter written by a woman whose sister had recently committed suicide following her family’s denial of her chronic fatigue syndrome diagnosis. When the young lady had told her sister about her diagnosis, the sister had responded with “When you have a husband and a family then you’ll know what chronic fatigue syndrome is!”

+ We want People to Assume it’s Just as Bad as it is, but No Worse than it Is

People’s observations do not conform to their expectations as to what a sick person should look and act like. Therefore, they are quick to become intolerant and suspect that the symptoms are overstated. It is often not only the disease itself that is painful, but also the emotional effects of having the illness discounted, having one’s respectability and judgment questioned, and dealing with the criticisms of others. It is extremely necessary for the person with chronic illness to feel that his disease is validated, even by people that he doesn’t know.

+ The Need to Feel Validated

Oftentimes, illnesses make it difficult for the person to walk far and so handicapped placards are issued to them. The placard holders are soon often confronted by accusatory looks, stares, notes left on their windshield and even approached and questioned about their obvious lack of wheelchair. For those who have experienced any one of these situations, it can be a humiliating and frustrating situation.

None of us feel as though we should have to justify our illness to anyone, and yet we are so angered by their obvious ignorance and their belief that we are abusing the “privilege” (that we wish we weren’t applicable to receive). Although they are complete strangers, we still have a desire for their understanding and validation.

+ What to do?

David Biebel, author of “If God Is So Good Why Do I Hurt So Bad?” writes in his book, “Because God is now here, I am not an only child. I have a friend, closer than a brother who understand the path I walk because He has walked it too. His heart beats with mine. His heart breaks with mine. His hands reach out, through their own pain, to touch my aching soul and let me know that someday it will all become clear-but for now to keep on walking, like He did and like others have before me” (p. 72).

The more you understand you have a purpose in life, despite your illness, the more your focus will be on your passions in life, rather than on the opinions and comments of others. The more we gain confidence and know our place in this world, the less we care about what others think.


Do you have a chronic illness? Find other articles all related to chronic illness and information on National Invisible Chronic Illness Awareness Week at .Lisa Copen is the founder of Rest Ministries which serves the chronically ill through Christian resources and other programs and support group materials

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