“Perfectly Normal”
Not everyone with a chronic illness has the same symptoms or degree of symptoms. Some have mild complications and with a little adjustment in their diets or schedules, they can lead a pretty “normal” life. Some have to make bigger changes, sacrificing various activities or their work situations in order to contend with their conditions. Others become so ill they are unable to work at all and struggle just to meet life’s daily needs.
Just about every one of us has experienced being so sick we had to stay home from work or school, because we were too sick to go. We hate being sick, because the time ticks by, the work piles up and we cannot do anything about it. We gripe and moan that we “don’t have time to be sick!” even when it has only been a few hours. It is just plain miserable to be sick, in pain and debilitated – nobody enjoys it.
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. After all, when we got sick, we got some rest, took some medication and were soon back on our feet. Moreover, when we were sick, we were pale and droopy, but they often look “perfectly normal.”
Two Battles
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, even though they may appear healthy and well. Just the same, a person can have spinal damage and excruciating pain, despite the fact that to the onlooker the 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 ones 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.
You Can Help
We must resist the temptation to make a visual diagnosis by coming to the conclusion that our loved one must be embellishing their situation or trying to pull the wool over our eyes, because to us they “look fine.” After all, when we rebut what they are telling us with, “But you LOOK good,” our friend really hears, “But, I don’t believe you, because I can’t see it.”
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 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 painful disabilities seem invisible to us.
This article contains excerpts from the booklet, But You LOOK Good: A Guide to Understanding and Encouraging People with Chronic, Debilitating Illness and Pain! This booklet explains how a person can be damaged by an illness and/or injury on the inside, but still “look fine” to others on the outside. It gives detailed suggestions of “what not to say” and explanations as to why. In addition, the booklet provides many examples of “what to say” to be an encouragement and offers practical “ways to help.
End Notes
This week is National Invisible Chronic Illness Awareness Week.
Sherri L. Connell, founder of Invisible Disabilities Advocate, studied Music Theatre in college where she was very active in singing and dancing in musicals. She also obtained a Bachelor’s Degree in Human Resource Management and a Bachelor’s Degree in Christian Leadership with a Minor in Liberal Arts. However, despite plans of a promising career in Human Resource Management and a Christian Music ministry, just before beginning her Master’s Degree she became very ill and unable to fulfill her lifelong dreams.
Now, instead of singing and dancing on stage for 10 hours a day, Sherri struggles just to wash her hair or make it to a doctor's appointment. Although she suffers from Progressive Multiple Sclerosis and Chronic-Late Lyme Disease, she does not “look” disabled to others. Sherri knows first hand, the pain and frustration that develops from being inside a body that will no longer cooperate with a person’s aspirations or even simple daily chores. As a result, she has been made aware of the need to educate others about the struggles of living with an “invisible disability.” Thus, in order to develop a better understanding and loving support, Sherri has dedicated her experiences and trials to informing others how to be a source of encouragement to their friend or family member. Sherri's goal is not to create a sense of pity, but compassion for their losses, respect for their courage and belief that their limitations are very real and beyond their control.