Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Aisha, Thanks for sharing this information. IDA is such a special lady. I wish everyone had this information. ===== Kristy http://www.geocities.com/HotSprings/Falls/4659/kristyspage.html __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 I had a friend tell me that the other day.....I just wanted to smack him LOL Denisa But You LOOK Good! This article helped me alot when I first read it, I remember crying cause someone finally understood what its like to be sick without having to physically look sick (although I do now) so I thought I'd pass this on to you all in the hope that this, and the other articles at this website help you with your own personal struggles. With much love, Aisha. The Invisible Disabilities Advocate! "Helping People Understand Chronic, Debilitating Illness!" QUICK INDEX: IDA's Publications! *IDA's Articles! *IDA's Booklet! About IDA! *What & Who Is IDA? *What Are People Saying About IDA? *IDA's Story! *IDA Featured! IDA's Links! *IDA's Links! *IDA's WebRings! Support & Messages! *IDA's Support Board! *Sign IDA's Guestbook! *View IDA's Guestbook! Where is God? *Where Is God? How Can You Help This Site? *Help Support This Site! Discounted Books & More! *IDA's Corner Store Front! *IDA's Favorite Books! Help Get the Word Out! *Add IDA's Banner! Contact Information! *Contact Information! ***** IDA ***** Now Available! IDA's 40 Page Booklet, "Helpful Hints!" ***** Please Note! The data contained in this web site are for informational purposes only and are not to be construed as medical advice. Also! The Invisible Disabilities Advocate is not an organization or a business. The title is used solely as a "pen name" for the author, only to signify her desire to educate others about disabling illness. Thanks! Part 2 of Helpful Hints Part 2 of the 40 page booklet, "Helpful Hints: A Guide to Understanding, Supporting & Encouraging People with Chronic, Debilitating Illness!" was derived from this article. But You "LOOK" Good! "Why Seeing Is Not Believing When Dealing With A Chronic Illness!" Written By: The Invisible Disabilities Advocate, Sherri L. Connell, BA IDA www.InvisibleDisabilities.com Copyright © 1996 To request permission to publish this article or excerpts from it in your newsletter, magazine, newspaper, etc., please E-Mail IDA at: editor@... 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. 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. *This is only a very small sample of the hundreds of chronic illnesses which can be disabling; it is not intended to be a complete list of all debilitating disorders. 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. 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 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!" 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! Copyright © 1996 To Go Back to IDA's Publications Page, Exit Out of This One (the "x" in your upper right hand corner)! ******************** Copyright Regulations: Please do not copy, print or reproduce this article in any way. To request permission to publish this article or excerpts from it in your newsletter, magazine or newspaper, etc., please E-Mail IDA at: editor@... ******************** Part 2 of the 40 page booklet, "Helpful Hints: A Guide to Understanding, Supporting & Encouraging People with Chronic, Debilitating Illness!" was derived from this article, "But You LOOK Good!" To Order IDA's 40 Page Booklet: "Helpful Hints: A Guide To Understanding, Supporting And Encouraging People With Chronic, Debilitating Illness!" Please send a check or money order made out to W. Connell for $3.25 for each 40 page booklet (includes postage in the US) to: IDA 41553 Madrid Dr , CO 80138 Discounts are Available for Orders of 15 or more! For More Information on the booklet, pricing, ordering, table of contents, etc: Click Here, visit The Invisible Disabilities Advocate website at www.invisibledisabilities.com or e-mail IDA at orders@... [ IDA's Home ] [ IDA's Publications ] [ Who Is IDA? ] [ IDA's Story ] [iDA's Booklet ] [ IDA's Links ] [ WebRings ] [ Nutritional Information ] [ Where Is God? ] [iDA's Favorite Books & Music ] [ IDA's Corner Store Front ] [ Help Support IDA ] [ Contact Information ] [ IDA's Support Board ] [ View IDA's Guestbook ] [ Sign IDA's Guestbook ] ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityVisual problems with colors?Click the link below and select the modify link to your right. Then select the **Send Plain Text Email** option. This will stop you receiving emails with colored or enlarged fonts./joinMembers Lounge:-Photo Album, memorial page, members profiles, birthdays, locations, medical resources, counselling via email and a whole bunch of free things.http://www.elderwyn.com/members Message Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at # on IRC DALnet./files/chat.htmBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator either via email <-owner > Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go." - Pueblo Prayer~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 this is so true isn't. i get tired of the looks i get when i park in the Handicap spot. i don't look like there is anything wrong with me (for those of you that don't know i have severe asthma). it took me a long time to get oevr feeling guilty. i still do feel guilty some days. but there i days i couldn't even walk to the store or whatever. some days i can't walk across a room. it is a blessing to have the hc tag. i just wish people would judge so much you know. aisha, you are such a beautiful person. thank you. hugs luv char But You LOOK Good! This article helped me alot when I first read it, I remember crying cause someone finally understood what its like to be sick without having to physically look sick (although I do now) so I thought I'd pass this on to you all in the hope that this, and the other articles at this website help you with your own personal struggles. With much love, Aisha. The Invisible Disabilities Advocate! "Helping People Understand Chronic, Debilitating Illness!" QUICK INDEX: IDA's Publications! *IDA's Articles! *IDA's Booklet! About IDA! *What & Who Is IDA? *What Are People Saying About IDA? *IDA's Story! *IDA Featured! IDA's Links! *IDA's Links! *IDA's WebRings! Support & Messages! *IDA's Support Board! *Sign IDA's Guestbook! *View IDA's Guestbook! Where is God? *Where Is God? How Can You Help This Site? *Help Support This Site! Discounted Books & More! *IDA's Corner Store Front! *IDA's Favorite Books! Help Get the Word Out! *Add IDA's Banner! Contact Information! *Contact Information! ***** IDA ***** Now Available! IDA's 40 Page Booklet, "Helpful Hints!" ***** Please Note! The data contained in this web site are for informational purposes only and are not to be construed as medical advice. Also! The Invisible Disabilities Advocate is not an organization or a business. The title is used solely as a "pen name" for the author, only to signify her desire to educate others about disabling illness. Thanks! Part 2 of Helpful Hints Part 2 of the 40 page booklet, "Helpful Hints: A Guide to Understanding, Supporting & Encouraging People with Chronic, Debilitating Illness!" was derived from this article. But You "LOOK" Good! "Why Seeing Is Not Believing When Dealing With A Chronic Illness!" Written By: The Invisible Disabilities Advocate, Sherri L. Connell, BA IDA www.InvisibleDisabilities.com Copyright © 1996 To request permission to publish this article or excerpts from it in your newsletter, magazine, newspaper, etc., please E-Mail IDA at: editor@... 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. 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. *This is only a very small sample of the hundreds of chronic illnesses which can be disabling; it is not intended to be a complete list of all debilitating disorders. 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. 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 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!" 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! Copyright © 1996 To Go Back to IDA's Publications Page, Exit Out of This One (the "x" in your upper right hand corner)! ******************** Copyright Regulations: Please do not copy, print or reproduce this article in any way. To request permission to publish this article or excerpts from it in your newsletter, magazine or newspaper, etc., please E-Mail IDA at: editor@... ******************** Part 2 of the 40 page booklet, "Helpful Hints: A Guide to Understanding, Supporting & Encouraging People with Chronic, Debilitating Illness!" was derived from this article, "But You LOOK Good!" To Order IDA's 40 Page Booklet: "Helpful Hints: A Guide To Understanding, Supporting And Encouraging People With Chronic, Debilitating Illness!" Please send a check or money order made out to W. Connell for $3.25 for each 40 page booklet (includes postage in the US) to: IDA 41553 Madrid Dr , CO 80138 Discounts are Available for Orders of 15 or more! For More Information on the booklet, pricing, ordering, table of contents, etc: Click Here, visit The Invisible Disabilities Advocate website at www.invisibledisabilities.com or e-mail IDA at orders@... [ IDA's Home ] [ IDA's Publications ] [ Who Is IDA? ] [ IDA's Story ] [iDA's Booklet ] [ IDA's Links ] [ WebRings ] [ Nutritional Information ] [ Where Is God? ] [iDA's Favorite Books & Music ] [ IDA's Corner Store Front ] [ Help Support IDA ] [ Contact Information ] [ IDA's Support Board ] [ View IDA's Guestbook ] [ Sign IDA's Guestbook ] ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityVisual problems with colors?Click the link below and select the modify link to your right. Then select the **Send Plain Text Email** option. This will stop you receiving emails with colored or enlarged fonts./joinMembers Lounge:-Photo Album, memorial page, members profiles, birthdays, locations, medical resources, counselling via email and a whole bunch of free things.http://www.elderwyn.com/members Message Archives and Digest Attachment Pictures:-/messagesChat:- Scheduled Daily Chats at # on IRC DALnet./files/chat.htmBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator either via email <-owner > Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe ~~~~ *** ~~~ *** ~~~ *** ~~~~“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go." - Pueblo Prayer~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 here's a good article someone posted in another group, a new spin on the " but you don't look sick " treatment: http://flash.lymenet.org/ubb/Forum3/HTML/008886.html I wish everyone peace and healing in 2006! Judi Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.