But You Look Good!

[Guest guest]

This is for the new members. Excellent read!

http://www.invisibledisabilities.com/lookgood.htm

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:0)

An argument with your spouse is a loving moment lost forever.

Mom to Bear, Wife to

But You

" LOOK "

Good!

" Why Seeing Is Not

Believing

When Dealing With A

Chronic Illness! "

Written By:

The Invisible Disabilities Advocate

IDA

P.O. Box 621106

Littleton, CO 80126

www.InvisibleDisabilities.com

ida@...

What Is A Chronic Illness,

Anyway?

A chronic illness is a disease or disorder that a person has to cope

with on a continuous basis. Many people become so ill, they are unable to work and are

forced to give up activities they have always enjoyed. Often their illness goes

undiagnosed for years, leaving thousands of people frustrated, depressed and without

answers to why their bodies will not cooperate with their desires.

But, They " LOOK " Fine!

How Can They Be Ill?

Many chronic illnesses such as: Arthritis, Chemical

Depression, Crohn's Disease, CFIDS, Cystic Fibrosis, Diabetes, Fibromyalgia, Heart

Disorders, Hypothyroidism, IBS, Lyme Disease, Lupus, Multiple Sclerosis, Neurological

Disorders, Osteoporosis, Parkinsons, RSD, Women's Chronic Disorders and many, many

others cannot be seen with the naked eye, but are nevertheless persistently keeping the

person from enjoying life the way they once knew **(this is only a sample of the dozens of illnesses which

can be debilitating and not intended to be a complete list)!

Unfortunately, their families and friends are rarely supportive and

understanding, because they do not see a broken bone or bleeding head to confirm the

complaints. However, do not expect to see

a disease that lives below the skin, because most illnesses are invisible

until the person has had chemo or organ failure! Your

friend or family member needs you to believe what they are saying

is true, without judgment or question.

So, They Have

" Good " &

" Bad " Days, Right?

Actually, not everyone with a chronic illness has the same symptoms

or degree of symptoms; yet, there are basically three stages in any chronic illness:

1) THE EARLY STAGE: This person may notice occasional

symptoms or lack of energy. They start experiencing setbacks from activities which

previously never took a thought. If diagnosed in this stage, which is rare, many can get

help from their doctors and proper nutrition to cure or prevent further progression of the

disease. This person has mostly " good " days with occasional

" bad " days.

2) THE MIDDLE STAGE (or the Relapsing/Remitting Stage): This

person may have frequent bouts of symptoms and is forced to make limitations for

themselves in order to avoid extreme fatigue and relapse of illness. They reluctantly

begin discovering that the simple things they used to enjoy, now must be done with care or

sacrificed completely. In this stage, some can lower the frequency of relapse and

progression of the disease with help from their doctors and proper nutrition. This

person has both " good " and " bad " days, depending on activity and

stress.

3) THE LATE STAGE (or the Chronic/Progressive Stage): This

persons disease has progressed to the point where it does not remit. They live each

and every day with symptoms that feel much like having the stomach flu, complete with

extreme to unimaginable fatigue, muscle aches, weakness, nausea, cognitive difficulties,

dizziness and/or pain.

When

they push themselves to do what used to be easy, like dusting a piece of furniture, going

to a relatives house or doing a load of laundry, they pay a high price, because

their symptoms worsen to an unbearable level for days and even months. In cases like

Multiple Sclerosis, the treating drugs available are affective only for persons in stages

1 and 2. This person does not have " good " days, only " bad " days

and " horrific " days.

But, What If They

" Give In "

To The Illness?

When

a young ice skater named, Karrigan was assaulted and suffered a leg injury, she

faced the possibility of losing all of which she had dreamed; the whole world cried with

, because it could have meant the end of her skating career! Yet, when a person loses

their job or is forced to give up their career due to illness,

for some reason, people often treat them like they are choosing to

do so; and, they are often insensitive to the fact that the sufferer has lost all for

which they have worked, planned and hoped for their future.

Most

people do not " give in " to illness; in fact, it is ingrained in our nature to

fight to survive as hard and as long as humanly possibly. If you believe that your loved

one is " giving in " to the illness, because they have given up their usual

activities, this is just your perception of how they are handling their limitations.

When

a person first experiences the effects of a chronic illness, they have a fantastic

attitude about conquering it; they feel strong and invincible

to its grip. Even if the disease progresses, they will continue to fight

for their right to live the way they planned their lives to be; and, they will stay persistent

in the battle until their bodies force them to make limitations.

Creating

limitations for oneself is one of the hardest things a person can do. It goes against

everything we are and everything we ever hoped to be. No one wants to

be sick and no one ever chooses to give up those things in life

which bring such joy. Yet, these limitations are mandatory in managing a chronic illness;

so, respect their new boundaries by acknowledging their losses and supporting their need

to say, " No. "

We,

as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our

best and enjoy life; after all, it is our incredible courage, perseverance

and persistence to fight for our lives which make our painful

disabilities seem invisible to the naked eye.

Well, I Still Don't

Understand!

At

least once in your life, you have probably experienced having to stay home from work or

school, because you were too sick to go; incidently, I have yet to meet someone who has a

cold or the flu, tell me they are having the time of their lives and

enjoying every minute of it! Or, you may have been hurt in an accident and were forced

to give up activities you loved for weeks or even months; so, you

know how stressful, depressing and frustrating being unable to do

what you want to do can be!

Now,

when I refer to being sick, I am not talking about feeling just a little

" under the weather " or just not " up to " going to work that day. I am

talking about being so sick you can barely sit up or talk, having

a fever that makes every muscle ache and your bones feel like they are being crushed.

Then, when you try to get up to go to the bathroom, your head pounds, your body feels like

it weighs a ton and you become dizzy and nauseous.

Just

imagine feeling that way every single day, week after week and year after year. True, some

chronic illness sufferers have a few " good days " in between, but many do not

have any at all! So, if you see them out and smiling, does that

mean they are having a " good day? " Not necessarily! Many times they cannot wait

for a " good day " to get out, because they do not have them; thus, they make the

sacrifice, sitting there in horrible agony and knowing they will pay dearly for it later!

No

human being can be at peace with being sick day in and day out! In fact, most people

become very frustrated and impatient after just a few hours; then, if it lasts a few days,

they become panicked and angry about missing work, school or other activities; next, they

become depressed and act like a week out of their busy lives is the end of the world! Yet,

they often treat their loved ones like losing months and years out of their

lives is no big deal! So, why would you expect your loved one to be happy with losing

years of their lives, when you cannot

stand to even lose a few days?

It

is true, you will never fully comprehend what it is like to be chronically ill, with all

of the loss and pain it poses. You will never know what it is like to feel horrible every

day and you will never have a grasp at what it is like to watch your lifetime dreams come

crashing down forever. So, stop using the excuse that you do not have understanding

and start focusing on whether or not you have compassion!

In

all, your loved one just wants you see their courage in enduring a

life of feeling sick, achy and exhausted all of the time; and, you have the capacity to

know you would not want to feel this way every day yourself! You know how horrible it is

to be sick and forced to put your life on hold for a while, so why dont you tell

them how amazed you are at their strength

and perseverance!

It Seems like I Am Always

Saying The Wrong Thing!

What can sometimes be even harder to bear than the illness itself,

is feeling alone in the daily struggle and mourning of lifelong dreams. As pieces of

oneself die off bit by bit, isolation consumes them when others refuse to affirm their

pain. By repeatedly trying to " cheer them up " and make them see the " bright

side " you are not validating their pain, but instead saying, " I dont want

to hear the truth " or " your losses dont matter. " On the other hand,

if you acknowledge their losses, they will no longer be compelled

to gain your belief by having to explain their situation over and over again.

Resist

the temptation to make a visual diagnosis by saying, " gee, you look youre

feeling good today " or " hey, you must be doing well. " They may look

like they are feeling well, because there is joy in their face from seeing you;

however, your comment will only make them realize they are alone

in their battle, since you are evidently unaware of their insurmountable hurdles.

In

other words, by rebutting their answers with, " But you LOOK

good, " your friend really hears, " But, I dont believe you, because you look

fine to me. " Instead try, " I am so glad to see you, " " wow, I

cant imagine what you go through, you are amazing! " " you look nice

today, " or " how can I pray for you? "

Encourage

your loved one by affirming your trust in

them, loving them and showing them that

they are still just as valuable to you even if they can no longer do the things they used

to do; your willingness to acknowledge their losses will give them

the strength and positive attitude they need to fight the illness, instead of wasting

their energy fighting with you to believe.

They are not seeking your pity or sympathy, they simply want your compassion;

some will need your help, just listen,

they will tell you how.

We, as chronic illness sufferers, do not want to give up; we want to

laugh, smile, look our best and enjoy life; after all, it is our incredible courage,

perseverance and persistence to fight for our

lives which make our painful disabilities seem invisible to the

naked eye.

" Learn

To See With Your Ears! "

Copyright © 1996

NOTE! **The example of

debilitating illnesses in paragraph two is only meant to be a small sample of the

dozens of chronic illnesses which can be disabling! This is a pamphlet about illness in

general, not a complete list of illnesses, which are debilitating! Please do not be

offended if your illness is not printed here, IDA cannot list them all and cannot keep

adding to this sample; otherwise, that paragraph alone would be extremely long!

This Pamphlet Is Part 2 Of IDA's 40 Page Booklet, " Helpful Hints: A Guide To Understanding What People With Chronic,

Debilitating Illness Are Going Through, Feel And Need From You! "

To Order, " Helpful Hints, " Please Send A

Suggested Gift Of $3.25 (To Help With Costs) For Each Booklet (Includes Postage). Make The

Check Payable To " W. Connell " And Send Order To:

IDA

P.O. Box 621106

Littleton, CO 80126

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