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 put our energy into finding something to wear that doesn't clash too badly; something that looks acceptable, despite the wrinkles. We search for the lipstick that we used last week. We dig through the closet looking for something that resembles a shoe. And we go on. We go out.
Once we are out and about, people assume that we woke up feeling wonderful, that we jumped out of bed and are without pain. Says Donoghue and Siegel, authors of Sick and Tired of Feeling Sick and Tired, “an added difficulty in adjusting to being handicapped with invisible chronic illness (ICI) is the phenomenon of appearing well.” Connie, a woman who lives with multiple sclerosis, and her friends are already planning their costumes for Halloween next year. They are going to dress up in “a costume” that portrays how they feel, so finally when people see them they might understand how they feel.
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.”
Feel Our 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.
For those who experience them, their whole world comes to a halt until the pain subsides. There is a constant struggle to try to have people know what we are going through, without seeming to search for sympathy and pity.
Men who live with illnesses, such as fibromyalgia, may feel self-conscious. Their illness is primarily seen as a women's disease. They appear to be sluggish and unmotivated when they can't do physical tasks. Women are being diagnosed with chronic fatigue syndrome in huge numbers and yet the illness is still called “yuppie flu” and treated with anti-depressants. The immense fatigue that one suffers from is rarely recognized or understood by their friends and family around them. A recent Dear Abby column featured a letter written by a woman who's 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!”
An Only Child?
Living with an invisible chronic illness can mean constantly trying to redefine your condition. We can't keep up with the rest of the world, and yet the world sees no excuse for our lack of participation. Some would argue that having an invisible chronic illness could be a blessing, as one has a choice to tell others or remain an assumed normal person.
The disadvantage of this is trying to convince others that the disease is legitimate and painful. Many people think “Aren't you overdoing it… or playing it up a little bit?” 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 judgement 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. One example of this is “the handicapped parking space confrontation.”
There are over 40 million people who live with chronic illness in the United States, most of the illnesses invisible. 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.
So what do we do with these frustrations and the lack of understanding that we may sometimes feel that other people have? 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).
This week is National Invisible Chronic Illness Awareness Week. Lisa Copen is the founder and director of Rest Ministries. She lives with rheumatoid arthritis and fibromyalgia and is the author of When Chronic Illness Enters Your Life Bible Study