Looking Good

May 21, 2007

I am SO friggin’ sick of people not believing in my pain because they can’t SEE anything wrong with me. Years ago, I came across a booklet written by an invisible disabilities advocate.  The title is: “But You Look Good: A Guide to Understanding and Encouraging People Living with Chronic Illness and Pain.” (http://www.myida.org/booklet.htmhttp://www.myida.org/booklet.htm)

This booklet was written for people who have difficulty understanding how someone can “look good” when they are “supposedly” suffering. Because of this misconception about appearance and health going hand in hand, people often jump to the conclusion that the ill person is just “being lazy, unmotivated or not trying hard enough.” This type of assumption is devastating to the sufferer, and, in fact, exacerbates our problems. Because of this kind of insensitivity, we not only have to deal with physical pain, but emotional pain, as well.

I cried with relief when I found this booklet because I knew I wasn’t alone. Countless others are going through the same thing. Some of them are fortunate enough to have their loved ones “see the light” after reading the booklet. Alas, I haven’t been so lucky in that respect, despite trying to get the message across for decades. Instead, I have to listen to comments about the messy state of the house, or be subjected to remarks like the one my mother made about me being a drama queen.

The following excerpts address “the paradox of looking good, but feeling bad.”

Often when we come across someone who says they have been sick and in pain for a long time, we might think they are either exaggerating or they are not doing something about it. The truth is, most chronic conditions cannot be seen with the naked eye, but nevertheless are persistently keeping the person from enjoying life the way they once knew. For instance, a person can battle extreme fatigue and/or cognitive impairments on the inside, even though they may appear healthy and well on the outside. Just the same, a person can have horrible pain and/or dizziness, despite the fact that to the onlooker they may look strong and able.

The biggest grievance those with chronic conditions have is that their loved ones often do not believe what they are going through is real, because to others they “look good.” Sadly, this makes the person feel as if they are being called a liar or a wimp. This can cause great strains on relationships between friends, family members and spouses. Ironically, those with chronic conditions would like nothing more than to gain complete control of their lives and not have to adjust to any limitations at all! Nonetheless, their bodies do not always cooperate with their desires, no matter how much they want it to.

Regrettably, a travesty occurs when the person not only has to contend with no longer being able to do what they love to do, but also has to battle for their loved one’s belief, respect and understanding. While the person with the illness/pain is mourning their loss of ability and freedom, others often accuse them of just being lazy or malingering.

Frankly, it is impossible for us to be compassionate, until we have acknowledged there is a situation for which to be compassionate! In other words, how can we say, “I am sorry you are sick,” when we are always saying, “I do not believe you are sick, because you don’t look sick?”

People living with chronic conditions do not want to give up! They make efforts to laugh, smile, look their best and enjoy life, even though they know they will pay dearly for it. Because of this, we should not confuse their endeavors to live life and be positive, with assuming they are feeling well or doing better. Instead, let us commend them for their incredible courage, perseverance and persistence that make their illnesses and injuries seem invisible to us.

Those of us with invisible disabilities are not looking for pity, just some understanding and compassion. And, when we don’t get it, even more damage is done.

Song of the Day: Lookin’ Good by Jamie Cullim


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