Why Don’t They Just Take Something? Living in the Gap.

One of the first questions that a person asks when we meet someone with a chronic condition is, “What do the doctors say?” You see, when we come across someone who is sick or in pain, we assume the medical community must have a handle on their condition.

Unfortunately, this often leads to thinking that they are still suffering, because they must not be doing what their doctor is telling them to do. After all, modern medicine has come a long way! What’s more, the doctors must have something that can take away the symptoms. Otherwise, the only other explanation is that this person must not be trying very hard to get well!

It is confusing for us when we meet someone who is in horrible pain or sick. As a result, we ask ourselves, “Why can’t they just take a something for it?” It just does not make sense that if they really were trying, they would be better by now. Thus, we often ask them, “Have you tried this?” or “Have you tried that?”

It is true most of us are not accustomed to the idea of illness being chronic. Usually when people get sick, we go to the doctor and then get better. After all, we are way too busy to even think about missing a moment lying in bed… miserable. When we do feel a cold coming on, we cringe and yell, “I don’t have TIME to get sick!”

Accordingly, we call the doctor, begging for a prescription that will make it all go away and fast! We may only be down for a few hours or maybe even a few days, but we hate every moment of it! We whine and cry to those around us, moan in pain and panic as we watch the clock wasting away our precious time. Nonetheless, soon we are back on our feet and back on track. We quickly forget how horrible it was to have to put things aside, feel terrible and unable to do what we want to do.

Yes, we are a world that is accustomed to popping some pills or vitamins and we are back in the race, feeling like our determination could defeat any viral army. After all, we did not stay sick for long because we acted, had a positive attitude and by gosh “we were not going to let any  illness keep us down!”

Conversely, when we meet up with a person who has been sick or in pain 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? Just about anything is treatable with modern medicine, isn’t it?

On the contrary, the truth is that many times the doctors do not even know what to do. Dr. Jeffrey Boyd (2001), a noted physician and author, wrote:

I am beginning to suspect that popular American culture is built upon the pipe dream that disease has been conquered by physicians, or will soon be conquered as soon as we figure out what all that DNA says. I’ve been a physician now for a quarter century, and let me assure you that is not how it looks from down here in the trenches. If this were a football game the score would be DISEASE 85 versus DOCTORS 15.

But what about all of the recent “breakthroughs” in medicine? Aren’t we getting a handle on curing diseases and learning how to repair the human body? Well… yes and no. Many experts conclude the amount of people suffering from chronic illness is actually increasing, because of the improvements in medicine in the past 2 centuries.

The reason being, with past medical care many people with various illnesses and injuries would not have survived. Today, they are kept alive with drugs, surgeries and treatments. Yet, for many, the improvements have not been sufficient to cure them or make them well enough to live without mild to debilitating symptoms. Dr. Boyd added:

The fundamental issue is that contemporary medicine is often able to delay death but not restore health, so that the more “breakthroughs of modern medicine” we have, the more sick people we have.  I say this without sarcasm and without cynicism  (2001).

In other words, modern medicine may be extending the lives of millions, but many of these people are still left with limitations. Here is one example of how the medical community has learned how to save someone, but the person is still debilitated. Dr. Boyd explained:

In the old days if you had a severe head injury, you died of brain swelling. Starting a couple of decades ago, doctors learned how to   prevent brain swelling, so that acute brain damage did not necessarily lead to death. But as a result of that “breakthrough of medicine” there is a large and rapidly growing number of Americans with Traumatic Brain Injury, most of whom are unable to return to the kind of work and lifestyle they had before, and many of whom are permanently disabled. Thus the more successful medicine is, the more sick people we have among us (2001).

Suddenly we have a growing group of people who live with chronic conditions. For many, treatments do help enough for the person to function normally again, but for others they do not. This leaves an abundance of people living an entire life ill, in pain, frustrated, searching and at a loss of how to deal with an ongoing disease or injury that may not go away.

Yes, most do “take something.” In fact, most have gone from doctor to doctor, trying medication after medication. Even for those who do find relief through medications, it is often a long, slow process that can take months or even years to get the right combination.

“Finding the right medication takes time, because patients may exchange one benefit or one condition for a side effect in another,” said Dr. Roland Staud, a medical researcher (Liddane, 2001). Unfortunately, many go through a gamut of medications, tests, procedures, physical therapy and surgeries, not to mention trying a number of special diets, supplements and other treatments.

For many, their limitations are mild and manageable with medications, treatments, therapies and learning to pace oneself. For some, it is a great struggle just to get through a day of work or raising kids, with no energy left for anything else. For others who become disabled, they are no longer able to work and it takes all they have just to complete a few daily tasks, wash their hair or go to a doctor’s appointment.

They could easily give up, but they keep battling and keep searching for an answer or least something that will help them manage their condition. Many have even fought the face of death and have won! They may still be living with limitations, but they often do not get the credit for the war they did win.

Therefore, isn’t it time for our society to realize that people with debilitating conditions are not weak and unassertive? Instead, let us recognize their courage and strength for living a life of loss, struggle and perseverance. After all, that is an incredible accomplishment in and of itself that most will never know!

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Resources:
Boyd, Dr. Jeffrey (2001, January). “A Tribute to an American Heroine.” Article is published in the Foreword to But You LOOK Good! (2002-2010) Invisible Disabilities Association.
Liddane, L. (2001, November). “New regimens aid  patients with painful and little-understood fibro-myalgia.” The Orange County Register

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Do your loved ones have a hard time understanding how your symptoms such as extreme fatigue, pain, dizziness and cognitive impairments can be debilitating?

The Invisible Disabilities Association strives to help friends and family better understand chronic illness and pain, as well as learn how to be a source of encouragement and support.

IDA offers our book, pamphlets, videos, radio and television interviews to help you and your loved ones forge the journey with limiting conditions. Read our book excerpts and pamphlets online for FREE or order them from IDA’s Store.

BOOK

But You LOOK Good! A Guide to Understanding and Encouraging People Living with Chronic Illness and Pain. This book gets to the heart of why our friends and family members have difficulty with continuing illness and pain. It helps them to understand that even though a person with a chronic condition may LOOK good, it does not mean they FEEL good! Moreover, it gives them simple, pragmatic ways to truly be an encouragement, what to say, what not to say and how to help. Read Excerpt of Part One. Order this Book.

PAMPHLETS

About the Invisible Disabilities Association – Who We Are and Our Purpose. Pamphlet helps you spread the word about invisible disabilities and IDA, the non-profit organization that reaches around the world to people living with chronic illness and pain.

Accessible Parking

Don’t Judge by Appearances – Parking with Invisible Disabilities.  Pamphlet helps people better understand the legal rights those with various disabilities have to park in an accessible parking space. It strives to shed a light on the fact that reserved spaces are not limited to disabilities that are readily visible to the onlooker. Order this Pamphlet

Chemicals in the Environment

Creating a Fragrance Free Zone – A Friendlier Atmosphere for People Living with Environmental Illness. Order this Pamphlet

Why Go Fragrance Free? Millions Report Adverse Reactions to Perfumes and Fragrances. Pamphlet for people who live with Multiple Chemical Sensitivities (or Environmental Illness) and their loved ones. Order this Pamphlet

Invisible Awareness

Looks Can Be Deceiving – Understanding What’s on the Inside, Despite What You See on the Outside. Order this Pamphlet

Multiple What?  Untangling the Perplexities of Multiple Sclerosis. An explanation of MS and how it’s symptoms and severity may differ from person to person. Order this Pamphlet

Why Don’t They Just Take Something? Living in the Gap. Loved ones often assume that if their friend or family member is still sick, they must be failing to do what their doctor is telling them to do. This article is a window into why this is not always the case! Order this Pamphlet

Service Animals

What Makes an Animal More Thank Just a Pet? – Service Animals Assist People with Many Types of Disabilities. Order this Pamphlet

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Proceeds help IDA continue to reach around the world with awareness, education, support and resources through our websites, book, pamphlets, videos, radio and television interviews, the Annual Awards Gala, events, seminars, the Invisible Disabilities Association Community and much more!

VIDEOS, TELEVISION, RADIO

Invisible Disabilities: Television Interview with IDA Founder and President, Wayne Connell. Comcast Newsmaker with Beverly Weaver.

Be Expedition Ready: Preparing for the Journey of Caregiving with Antarctic Mike Pierce and IDA Founder and President, Wayne Connell.

Finding Humor in Difficult Times with Karyn Buxman, RN, MSN, Hall of Fame Speaker. Part I, Part II, Part III.

IDA Brings Awareness and Support Around the World!

Invisible No More with IDA Founder and President, Wayne Connell. We Envision a World Where People Living with Illness, Pain and Disability will be “Invisible No More!”(sm)

Invisible No More: 7 Realities of the Invisible Becoming Visible with IDA Founder and President, Wayne Connell.

Invisible No More TV. This campaign was launched by the Invisible Disabilities Association to bring awareness to the challenges of living with invisible disabilities, education to friends and family and support to those living with debilitating conditions.

The Invisible War with Former Captain Luis Carlos Montalván and his service dog, Tuesday.

Keep Swingin’ with Former New York Mets Champion, Ed Hearn.

Living with Debilitating Illness and Pain with Sherri Connell, wife of Wayne Connell, the Invisible Disabilities Association Founder and President.

What to Say, What Not to Say and to Help People Living with Illness and Pain. National Invisible Chronic Illness Awareness Week Lisa Copen interviewed IDA Founder and President, Wayne Connell and Wife Sherri.

Not Handicapped Enough. HUFFPOST LIVE News. HUFFPOST LIVE by THE HUFFINGTON POST. Guests Wayne Connell, Karyn Buxman, RN, MSN, Sherri Connell. Also with Elsa S. Henry.

Living with Brain Injury and Illness. Roselyn Saunders shares her inspirational and touching story of her challenges and triumphs.

Running the Race of Caregiving with Antarctic Mike and Angela Pierce. Angela is a survivor of a climbing accident who has been living with chronic pain and injuries for decades.

MORE VIDEOS, TELEVISION AND RADIO:

We have more amazing awareness, education and support videos, radio and television interviews from IDA!

Invisible Disabilities Association YouTube Channel
Invisible No More TV
Radio and Television Interviews

Understanding What’s on the Inside, Despite What You See on the Outside.

We have all seen it! Someone pulls into an accessible parking space, “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!

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 (U.S. Department of Commerce). 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 Fibromyalgia explained, “…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 Fibromyalgia, Lupus, Lyme Disease, Multiple Sclerosis, Reflex Sympathetic Dystrophy, Myalgic Encephalomyelitis (ME), Crohn’s Disease, Cystic Fibrosis, or a host of many others.

Lisa Copen, the founder of Rest Ministries who lives with Rheumatoid Arthritis and Fibromyalgia reasoned, “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, PhD, a psychologist and speaker who worked 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 Association, 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, who is disabled with 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. People cannot relate with the chronically ill since the individual is not screaming,  crying or grimacing” (Copen, When the Illness….).

In addition, usually when most people get sick, they go to the doctor and soon get better. Jackson P. Rainer, PhD, 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?

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, PhD, a Family Social Science professor and therapist.

Beckey, a woman living with Hypogamma-globulinemia 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, a person can see how it could  happen. Take Randy 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” (IDA Support Group).

Regrettably, “The invisibility of most chronic conditions makes it even more difficult to convince others that you really are in pain” Copen observed. “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.”

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. © 2004 – 2016 Invisible Disabilities Association.

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REFERENCES 

• 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.
• Copen, Lisa (1998). When the Illness is Invisible. …And He Will Give You Rest Newsletter, Volume II, Issue 3, Rest Ministries.
• Copen, Lisa (2001). When a Friend Has a Chronic Illness Brochure. Rest Ministries.
• IDA Support Board (2002). 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
• Lorden, Lisa (2000, October). Privilege and Prejudice: Disabled Parking with an Invisible Illness. Self Published Article. Fibromyalgia Aware.
• 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.

But They Look So Good

But You LOOK Good Booklet

Don’t Judge by Appearances – Accessible Parking

Just Take Something

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The Invisible Disabilities Association strives to bring awareness about chronic illness, pain and injury to friends, family, co-workers, businesses and more. Check out our booklet, pamphlets and videos that address living with invisible disabilities. Read our booklet excerpts and pamphlets online for FREE or order them here.

But You LOOK Good!  A Guide to Understanding and Encouraging People Living with Chronic Illness and Pain. This 56 page book gets to the heart of why our friends and family members have difficulty with continuing illness and pain. It helps them to understand that even though a person with a chronic condition may LOOK good, it does not mean they FEEL good! Moreover, it gives them simple, pragmatic ways to truly be an encouragement, what to say, what not to say and how to help. Read Pamphlet Excerpt of Part One.  Order Booklet or Pamphlet.

Don’t Judge by Appearances – Accessible Parking Rights and Needs for People with Invisible Disabilities. Order this Pamphlet.

Looks Can Be Deceiving – Understanding What’s on the Inside, Despite What You See on the Outside. Order this Pamphlet.

Multiple What? Untangling the Perplexities of Multiple Sclerosis. An explanation of MS and how it’s symptoms and severity may differ from person to person. Order this Pamphlet.

Why Don’t They Just Take Something? Living in the Gap. Loved ones often assume that if their friend or family member is still sick, they must be failing to do what their doctor is telling them to do. This article is a window into why this is not always the case. Order this Pamphlet.