posted 09 November 2003 18:43               

But You "LOOK" Good!
The wrong thing to say to someone with a chronic illness.

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, Parkinson’s, 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 person’s 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 relative’s 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 Nancy 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 Nancy, 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 don’t 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 don’t want to hear the truth" or "your losses don’t 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 like you’re 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 don’t believe you, because you look fine to me." Instead try, "I am so glad to see you," "wow, I can’t 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!"

posted 09 November 2003 19:46               

I get so frustrated from hearing "but you look ok".

It summed it up so eloqueloently.

posted 10 November 2003 10:30               

--Annie

posted 10 November 2003 12:11               

Thank you so much for posting this! I just had a frustrating conversation with my sister about my family and our battle with Lyme. I am going to send this to her right now!

frenchbraid

posted 10 November 2003 13:00               

The thanks should actually go to Lightfoot for distributing this article to our Colorado Support System...THANKS to YOU my dear friend!

posted 24 November 2003 00:29              

Yes I will go lie down, melanie.

posted 24 November 2003 07:54            

reading this, my aunt asked if I had written it...I have written alot of letters to Editors throughout the years, not on the subject of lyme or anything like that. But, when she asked me that, I told her I could've written that as it expressed exactily how I felt.

Again, thanks for bringing this to our attention and getting the word out.

Funny, how when I was sicker and gained alot of weight from Paxil, the evil drug, that folks thought I looked healthy.

Now, that all that weight is gone and then some, folks are saying that I now look sick...boy, do they have that wrong.

I've always had an disdainment to "fat" folks, thought they were lazy, unclean, etc. My daughter reminded me when we were out to eat the other night when I whispered something about a woman being at the buffet that was about 300lbs, that she "could" be sick. It really put things into prespective for me.

Now, I have to think twice.

posted 24 November 2003 08:27               

You have raised one smart and compassionate daughter. Take a bow.

NE-

Look for a package of safety pins in your Christmas stocking! (now, get back to bed)

Kathy-

Hoping that the CSS and LymeNet will provide you a little shelter from the storm...know that you are never alone.

posted 14 October 2004 13:26               

I just ordered a booklet called.."But You Don't Look Sick or But, You Look Good.

It was through IDA.

When I am functioning better, I will do the research and post the web site.

I have a habit of reading a post and then loosing it so I wanted to get this to the top.

posted 14 October 2004 14:05            

I think this may be the link to which you are referring:

This article is Part One of the 48 page booklet,

"But You LOOK Good: A Guide to Understanding and Encouraging People Living with Chronic, Debilitating Illness and Pain!"
http://www.myida.org/lookgood.htm

posted 03 November 2004 13:00               

I just sent it to some family and friends.

posted 12 August 2005 17:35               

I always hear..."But, you do not look sick." Folks just do not seem to get it. Maybe when I finally get my cane because Lyme has been destroying my eye sight and balance, someone will believe me.

Thanks again and this would indeed be a good site for newbies.