The Paradox of Looking Good But Feeling Bad
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August 25, 2007 at 10:39 am
People living 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 illnesses and injuries seem invisible to us.
The Paradox of Looking Good,
but Feeling Bad
But They LOOK So Good!
Surprisingly, “More than 125 million Americans have at least one chronic condition and 60 million have more than one condition” (Partnership for Solutions). An illness or injury is considered chronic, when it lasts a year or longer, limits activity and may require ongoing care.
Not everyone with a chronic condition 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 for just a day. 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.”
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 and/or cognitive impairments on the inside, even though they may appear healthy and well on the outside. Just the same, a person can have horrible pain and/or dizziness, despite the fact that to the onlooker they 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 one’s 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.
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 living 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 illnesses and injuries seem invisible to us.
Resources: The Partnership. “The Problem.” Partnership for Solutions (2001). Found at: http://www.partnershipforsolutions.org/problem/index.html (accessed September 18, 2006). Introduction.
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August 25, 2007 at 12:32 pm
Thanks for posting this RC. Very True.:)
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August 25, 2007 at 4:06 pm
[QUOTE=angel2ndclass22699]Thanks for posting this RC. Very True.:)[/QUOTE]
Your Welcome. Articles like these have helped me through my short journey so far. I hope it can help others also. It’s good to give all the family members.:)
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August 25, 2007 at 6:11 pm
Yes it really hit home with me. I tend to try to have a good attitude about this, I’m making the most of my life, trying to learn new things I can do with this body and people mistake that for being well. They think because I have a sense of humor that I am not sad for the things I have lost. I have lost worse than some of my body’s abilities in my life, I’ve lost people who can’t be replaced. In comparison with that my fingers being numb are really rather minor.
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August 26, 2007 at 10:29 am
RollerCoaster,
What a wonderful way of describing the life of GBS/CIDP and others living with chronic conditions. I wish that article had been around when I was first diagnosed with GBS. As much as I tried to go back to all of my “normal” activities and suffered the consequences, I still have to deal with many who thought I was faking it (even after spending 1 month in the hospital, 2 months in rehab and a year in a wheelchair).
I’m going to post this article in my work station as the company I work for has quite a few functions that I refuse to attend (these functions usually include 600+ people). They have no idea what it’s like to have bad balance and to have to constantly move over to let other people pass you as I’ve had my cane kicked numerous times by people who “didn’t see it”…duh!!
Thanks again for sharing,
Tina
GBS 1991 -
August 26, 2007 at 1:04 pm
Wow! The timing of this is uncanny. I just finished reading a book called,[I]You Dont Look Sick by Joy Selek[/I]and found a lot of it to be applicalble and validating. I have been struggling with the whole invisable illness syndrome my whole life with Juvinile Diabetes and now CIDP. I often feel guilty for having to give up my work and going on disability and for getting PT and OT and AFOs when I can do more than most on this forum. My CIDP is slowly progressive and sometimes I lose perspective about how much function I have lost because I have learned to compensate and continue to do so as the symptoms progress. Getting the AFOs this week really showed me how hard I work at just standing up and walking. For the first time in years I could get up with ease and walk without imbalance and fear of falling. Yet I think, maybe if I just set my mind to push myself. The fatigue is such a silent killer too. I get myself to that point of pushing and then am rendered exhausted in bed. Its the elusiveness of this condition that makes me crazy and when people see me they say, Well you look good. Which makes me want to give a list of my daily maintainence to get this way. Drugs, Chemo, Sleep, PT, limited activity. just to prevent further damage. I don’t know I just feel bad today and this article hit the nail on the head. Thanks for the post and for llistening.
Linda -
August 26, 2007 at 4:38 pm
[QUOTE=L Cala]Wow! The timing of this is uncanny. I just finished reading a book called,[I]You Dont Look Sick by Joy Selek[/I]and found a lot of it to be applicalble and validating. I have been struggling with the whole invisable illness syndrome my whole life with Juvinile Diabetes and now CIDP. I often feel guilty for having to give up my work and going on disability and for getting PT and OT and AFOs when I can do more than most on this forum. My CIDP is slowly progressive and sometimes I lose perspective about how much function I have lost because I have learned to compensate and continue to do so as the symptoms progress. Getting the AFOs this week really showed me how hard I work at just standing up and walking. For the first time in years I could get up with ease and walk without imbalance and fear of falling. Yet I think, maybe if I just set my mind to push myself. The fatigue is such a silent killer too. I get myself to that point of pushing and then am rendered exhausted in bed. Its the elusiveness of this condition that makes me crazy and when people see me they say, Well you look good. Which makes me want to give a list of my daily maintainence to get this way. Drugs, Chemo, Sleep, PT, limited activity. just to prevent further damage. I don’t know I just feel bad today and this article hit the nail on the head. Thanks for the post and for llistening.
Linda[/QUOTE]Julie,Linda,Tina
I know the routine very well.ALL,
I’m going to post another article about another chronic illness. It lets people who are not “ILL” have some insight. Hope it helps as well to inform family and friends. I still have many family and friends who just do not get it!!![url]http://hometown.aol.com./brisatrue/brisa3.html[/url]
Letter to People Without Hepatitis
Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually mis-informed.
In the spirit of informing those who wish to understand … These are the things that I would like you to understand about me before you judge me…
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what Hepatitis does to you.
Please understand that HCV or HBV is variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!”, if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that “getting out and doing things” does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct… if I was capable of doing these things, don’t you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, “You just need to push yourself more, exe!
rcise harder…” Obviously HCV deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.Also, Hepatitis may cause condary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m out for the day (or whatever). Hepatitis does not forgive.
If you want to suggest a cure to me, don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepaititis then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor.
In many ways I depend on you – people who are not sick – I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too … you’re my link to the outsideworld… if you don’t come to visit me, then I might not get to see you… and, as much as it’s possible, I need you to understand me.
Authored by Bek Oberin
It was James J. Corbett, former heavyweight champion of the world who said: “Fight one more round. When your feet are so tired that you have to
shuffle back to the center of the ring, fight one more round.
When your arms are so tired that you can hardly lift your hands to come on guard,
fight one more round.
When your nose is bleeding and your eyes are black and you’re so tired that you wish your opponent would crack you one on the
the jaw and put you to sleep – DON’T QUIT – FIGHT ONE MORE ROUND.”These are my feelings about handling whatever struggles come my way. Whether it’s dealing with my children’s problems, or my chronic Hepatitis C, I simply will fight and try until it’s God’s will that I can’t anymore. Sure, I get sad. I have alot get be sad about! I give myself permission to cry as long as I need to. That’s not giving up; that’s being human. I never stop planning for tomorrow. I never miss the chance to be happy for I have so much to grateful for. I worry about my kids, like every mother, but I put my faith in God, that they will be ok when the day comes I can’t be here for them anymore. I never stop fighting, and I never will.
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September 4, 2007 at 3:18 pm
Thank you for posting. I printed that out for my boss. I am constntly trying to put a smile on my face and acting as if I’m in a sreen play util I get home. Then, many times I cry because I am so weak and n obody understands becaus…..
” I LOOL SO GOOD” I must be alll right. No!!!!!! It’s because i try so hard to make myself be soooo right until I hit the bed.LOL I do’t want to push my illness or residuals on anyone. They don’t understand anyway, so why bother. I iwsh they could walk a mile in my shoes, that’s all. Maybe they would bet it. xoxoxoxoxoxo Roxie:)
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