LOOKS Can Be Deceiving!

Understanding What's on the Inside,

Despite What You See on the Outside.

 Copyright © 2004 The Invisible Disabilities Advocate

www.InvisibleDisabilities.org

We have all seen it! Someone pulls into an accessible parking space, otherwise known as a “handicapped spot,” jumps out and dashes into the store. It is obvious they are not disabled, they are just in a hurry and being quite lazy! It makes us angry, because not only is it illegal, but it is immoral to steal the spaces from those who actually need it!

Sometimes we even see someone park there who has a legal placard, window plaque or license plate. Nevertheless, it seems evident that they must be using someone else’s permit because they certainly do not “look” disabled! Otherwise, how else would they have an accessible parking license?

Often we simply shake our heads in disbelief and walk on. Sometimes we just cannot turn away, so we give them a look or even say something to show our disapproval. After all, we want them to know that they are not “pulling the wool over our eyes!” We know they are living a lie and we know their dishonesty could cost someone who deserves it, the right to park there!

When it comes right down to it, our response is that of protecting those with disabilities, by defending what is rightfully theirs. This is an honorable and admirable intention that should be commended! On the other hand, what if the person with the license told us they actually did have a need to park there?

Would we laugh in disbelief, turn in disgust or would we show compassion? Would we believe them, make an effort to understand or would we assume they were lying? After all, why would they actually need to park there when they “look” perfectly able to walk? Besides, isn’t it obvious who is and who is not disabled? Well, the answer is – NO!

According to the U.S. Department of Commerce in 1997, there were 26 million Americans considered to have a severe disability and only 7 million of them use a wheelchair, cane, crutches or walker. Therefore, we cannot always judge whether a person is disabled or not by how they look to us. True, not every kind of disability qualifies a person to park in a reserved space, but it is considered a disability – whether or not it is visible to the onlooker.

Despite the facts, when most people think of a disability, they picture in their minds a person with a visible, obvious impairment. Lisa Lorden, a writer living with Fibromylagia explained in her article, Privilege and Prejudice: Disabled Parking with an Invisible Illness, “…our visually oriented society may not take the time to look beyond appearances. People tend to believe what they see; and if it can't be seen, it simply doesn't exist.”

We often do not realize that a person can have hindrances that come from the inside and may not be visible on the outside. In other words, they can have a physically limiting illness or injury, even though it is not obvious to the onlooker. Their limitations may be disabling, but because their symptoms can seem unapparent to most, we call them, “Invisible Disabilities.”

Their limitations may stem from such illnesses as CFIDS, Crohn’s Disease, Cystic Fibrosis, RSD, Fibromyalgia, Lupus, Lyme Disease, Multiple Sclerosis, Diabetes or a host of many others.

Lisa Copen, the founder of Rest Ministries who lives with Rheumatoid Arthritis and Fibromyalgia reasoned in her article, Why Don't Churches Understand Chronic Illness? “He or she may be young, and no one really believes that there are young ill people in our country.” 

Even so, they may have debilitating pain, fatigue, weakness, dizziness and/or cognitive impairments from a diseased spine, organs, heart, nervous system, cells or an autoimmune disorder that keeps them from being able to function at a normal level. Alternatively, they may have debilitating pain from an injury to their back, head, spine or another part of their body that limits their ability to work or even complete daily tasks. 

According to F. Marcus Brown III, Ph.D, a psychologist and speaker who works with people with chronic conditions, “Diffuse pain and ‘invisible’ limitations interfere with relationships, impact family members, limit the completions of daily tasks, and can lead to financial ruin.”

Some people have both invisible and visible disabilities. Many who use a wheelchair, cane or walker often have excruciating pain and fatigue as well. Often it is actually the invisible symptoms that constraints their activity, even though those limitations are not so obvious to others.

Sherri Connell, wife of the founder of The Invisible Disabilities Advocate® was paralyzed from the mid-back down when she was diagnosed with Multiple Sclerosis in 1991. Her boss offered to purchase a wheelchair accessible desk for her, as she planned for her return to work. 

Nonetheless, Sherri never recovered from the unbearable fatigue, pain, weakness, dizziness and cognitive impairments, which were the cause of her disability. Even though she regained much of the use of her legs, she remains unable to resume her career.

Not everyone with chronic condition has the same symptoms or degree of symptoms, so we cannot put them all into the same category. Some have mild complications and with a little adjustment in their diets or schedules, they can lead a pretty “normal” life. Others have to make bigger changes, sacrificing various activities or their work situations in order to contend with their conditions. However, some become so ill they are unable to work at all and struggle just to meet life’s daily needs.

In IDA’s online support group, Paul, the founder of Church on the Net who is disabled by PMVA (Prinz Metals Variant Angina) and Asthma commented on how people treat him like he is fortunate for losing his ability to work. He wrote, “I think one of the worst things about losing your work to disability is the social contact you lose. I never realized, until it was gone, just how much I benefited from being a part of a large group of people in a workplace setting…. I find it hard to believe the number of people who tell me how lucky I am. Lucky?”

John, another man from IDA’s group with multiple injuries expounded, “One of the worst things about being disabled is loneliness. Not only do the disabled suffer financial hardship, but also suffer from social isolation and negative stereotype…. Working is so much easier than dealing with being disabled.”

It is true most of us are not accustomed to the idea of illness or pain being chronic. “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.” explained Lisa Copen in her article, When the Illness is Invisible. “People cannot relate with the chronically ill since the individual is not screaming, crying or grimacing.“  

In addition, usually when most people get sick, they go to the doctor and soon get better. Jackson P. Rainer, Ph.D, a leading authority on grief and loss advised, “Chronic illnesses are different. They do not follow the predictable path from warning signs to recovery.”

As a result, when we meet up with a person who has been sick or injured for months or even years, we often assume they must be lazy or unmotivated, they must not want to work or they must not be doing what their doctor is telling them to do. Otherwise, wouldn't they just take some medicine and get better, just like we did when we were sick?

In her article, Perspectives on Friendship, Joan S. Livingston noted, “You're still sick?’ is a question PWCs [People with Chronic Illnesses] commonly have to field even after 10 or 20 years of illness. The implication - a punch to the gut - is that you're not really trying or just haven't scouted out the right doctor.”

The biggest grievance those with invisible disabilities have is that their friends and family often do not believe what they are going through is real, because to them they “look good.” Ginviolet, a young lady with a chronic condition agreed when she wrote to IDA, “The fact that others can't see it makes it harder for me… they tell me I don't look sick. That's good, in a way, because I don't want to look sick. But when your friends start to doubt you and say you look fine to them, it's hard.”

Sadly, this makes the person feel as if they are being accused of being a liar or of over-exaggerating their situation. Clearly, this can cause great strains on relationships between friends, family members and spouses.   

The truth is that even though we assume someone with a chronic condition is going to look sick or in pain, “Many with chronic physical illness look no different than other people, so family members and friends may not realize why they are preoccupied with pain or their prognosis,” stated Patricia Boss, Ph.D, a Family Social Science professor and therapist.

Beckey, a woman disabled with Hypogammaglobulinemia and Post Traumatic Stress Disorder cried out, “Both my sons are married but neither can understand. One never calls anymore and lives in another state. The other one lives in another town near here, but tells me to grow up and get off the mega medicines I have to take.”

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. Ron, a man living with chronic back injury pain and HVC (Hepatitis C) told IDA’s group, “It’s bad enough dealing with the emotional roller-coaster, but I’m basically being called a liar (as if my surgeons have operated on me over two dozen times just to help me maintain my charade). I find it hard enough to get through the day but the minimal amount of family support is just sauce for the goose.”

While the person with the illness and/or pain is mourning their loss of ability and freedom, others often accuse them of just being lazy or malingering. It is difficult to comprehend that people can actually disbelieve someone who is suffering. 

On the other hand, we can see how it could happen. Take Randy, from IDA’s group, for example. He is a man who is 6’5” and 250 pounds tells you he is unable to help move your furniture, because of his chronic back pain! You might think to yourself, “But he looks so strong and able!”

Because of this, even Randy’s family has a hard time understanding his limitations. Randy disclosed, “My family considers me a pill head and a drug dependant person. I honestly hurt more when I’m around them because they don’t understand.”

Regrettably, “The invisibility of most chronic conditions makes it even more difficult to convince others that you really are in pain” Copen observed in Why Don't Churches Understand Chronic Illness.

"Friends and family of those with chronic illness care a great deal about what their loved ones are going through, but oftentimes the invisibility of the illness sets up an environment for misunderstandings and even doubt about the validity of the illness,” Copen made clear to her readers. 

Unfortunately, when we disbelieve someone’s limitations, we imply he or she is not being forthright about their situation. This causes the person with the illness or injury to feel as if their character and honesty is being judged.

Of course, this cuts straight to the heart, when their virtue is torn to shreds. Debbie, a woman with APS (Antiphospholipid Antibody Syndrome) described, “The greatest barrier I run into every day is people who think I am trying to rob the system or faking or whatever. I am seriously ill, but to look at me, you would think I was young, healthy with everything going for me.”

On the contrary, those living 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! They often spend countless hours researching, trying different medications and going from doctor to doctor in hopes to find a solution. Therefore, to claim they just do not want to get well or must not be trying hard enough, is the last thing they need or deserve to hear from those around them.

Boss, Patricia (November 2002). Ambiguous Loss from Chronic Physical Illness: Clinical Intervention with Couples, Individuals, and Families. Journal of Clinical Psychology-In Session, Volume 58, 1351-1360. Wiley Periodicals, Inc.

Brown, F. Marcus (November 2002). Inside Every Chronic Patient is and Acute Patient Wondering What Happened. Journal of Clinical Psychology-In Session, Volume 58, 1443-1449. Wiley Periodicals, Inc.

Copen, Lisa (1999, January). Why Don't Churches Understand Chronic Illness? ...And He Will Give You Rest Newsletter, Volume III, Issue 1, 7-9. Rest Ministries: www.restministries.org.

Copen, Lisa (1998). When the Illness is Invisible. ...And He Will Give You Rest Newsletter, Volume II, Issue 3, Rest Ministries: www.restministries.org. Rest Ministries: www.restministries.org.

Copen, Lisa (2001). When a Friend Has a Chronic Illness. Brochure. Rest Ministries: www.restministries.org.

IDA Support Board (2002). Visitors to IDA's online support group, all quotes given with permission.

IDA Survey (1999). Poll to those with chronic conditions. Question: How Does Your Church Deal with Your Illness? All quotes given with permission.

Livingston, Joan S. Perspectives On Friendship. Self Published. About.com Columnist, Chronic Fatigue Syndrome/Fibromyalgia http://chronicfatigue.miningco.com

Lorden, Lisa (2000, October). Privilege and Prejudice: Disabled Parking with an Invisible Illness. Self Published Article. http://Fmaware.org

Rainer, Jackson P. (November 2002). Bent but Not Broken: An Introduction to the Issue on Chronic Illness. Journal of Clinical Psychology-In Session, Volume 58, 1347-1350. Wiley Periodicals, Inc.

U.S. Department of Commerce (1997). Census Bureau: Current Population Reports. (Publication P70-61). Author: John McNeill

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"LOOKS Can Be Deceiving!" Copyright © 2004 The Invisible Disabilities Advocate: www.MyIDA.org. Order IDA's 52 page booklet, But You LOOK Good: A Guide to Understanding and Encouraging People Living with Chronic Illness and Pain! Visit IDA's website for links, articles, support and booklet ordering. No internet? Send a SASE to: IDA, P.O. Box 4067, Parker, CO 80134 to request a mail order form.

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