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Old 05-10-2004, 06:02 PM   #1
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kass HB User
How To Talk To Family

Can anyone offer any suggestions on how to let family members know how much pain your in. I have had pain for almost 10 years now. My husband just recently retired and is 9 years older than me. Now I have several of his friends telling me that since he's worked the last 25 years it's my turn to find a job. They don't know the pain I've been in and that I have Fibro and also that I'am on Vicoden and Oxy-Contin. I'am not one to whine or just sit around. I've done my fair share of the work in the last 25 years raising three kids and staying home and doing all the yard and house work. People treat you like your just lazy and want to complain all the time. I just don't know what to say or how to explain this awful disease. If you try to explain it I feel like what's the use they won't get it anyways! Any suggestions would be helpful. Thanks

 
Old 05-11-2004, 07:34 AM   #2
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typingterror HB User
Re: How To Talk To Family

Trying to relate anything regarding fibro to "normal" people is impossible. They will listen with interest initially, but have very low tolerance for anyone who does not get better quickly and will stay clear of you as you will be considered a whiner. I have found the best print out is on fibromama website which has to do with explaining to family/friends. You have to gauge each day according to how you feel and try to stay away from anybody negative as it will only exacerbate your symptoms. It is a full time job just dealing with our own issues. (TT)

 
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Old 05-11-2004, 05:19 PM   #3
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waiting4acure HB User
Re: How To Talk To Family

I certainly understand and truly wish there was an easy straight forward answer. It's so frustrating because how do you explain something that the outside world cannot understand. They see us looking "normal"....but cannot see our "horrible pain." It's a shame that we need to look "disfigured" in order to be understood. Every time my mother wants me to do something that I am not able to do (because it's during a time I am not feeling well) she brings up something that I was "able" to do three days prior. I am 47 and have been suffering with fibro for 2 years. It definately is the punishing pain you cannot help or would wish on anyone. To those who think it's "your turn" to work....you have certainly contributed over and beyond to society. You have raised your children, which is a very admirable thing to succeed in. Pat myself on the back, I was a stay at home mom for 13 years until a divorce. I feel I contributed greatly in how all three of my children have turned out. They are wonderful and loving people. Taking care of the house, the yard and most importantly your children is more than the people who are suggesting you should "go back to work" could begin to understand, obviously. The best suggestion I could give is what I have done. When I feel myself being stressed by those who do not "care" to understand...whether it be my mother, a friend or anyone else....I back away and do not communicate with them. After a while they get the picture. I didn't say understand....but they come to realize as I have clearly said to my mother, stress makes my pain worse. I have told her that the doctor says I have a choice, and I have come to realize only I can except and stress over what someone else does not understand. Not sure if my point has made much sense....but I hope it helps in some way. Take care and don't stress or worry about what someone doesn't understand. That's their problem...don't make it yours

 
Old 05-12-2004, 04:54 PM   #4
Mara
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Re: How To Talk To Family

ditto TT & W4C.

Raising a family, taking care of business, the home is a full time job. A mans job is sun to sun, a womans work is never done.


If you want to explain it to these people in particular, if they are not interested in you personally, I think it would fall on deaf ears. I would not bother. Don't stress over them. It's not worth triggering a flare, because stress will do it!

You don't have to justify your lifes work and investments or future. It is not their place-they are out of line. If they were joking, it was in poor taste. It's hard when people don't understand as it is. Trying to explain things to people like that is twice as hard because you are fighting two fronts- 1. the chauvinism 2. people lacking compassion are less understanding. Chronic pain is a nagging pain in the tuckuss. If they canít walk a minute in your shoes and understand that moment, donít try explaining the mile. Unless they walk it on hot coals

 
Old 05-12-2004, 06:53 PM   #5
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kass HB User
Re: How To Talk To Family

Thanks everybody for the replies. I guess we're all in the same boat. Something that you might find amusing is this: I am into geneology and as most geneologists do, I was at a cemetery looking for headstones of past relatives. I came upon a particular headstone which read: "I TOLD YOU I WAS SICK!". I found this amusing as those of us who suffer from fibro tell people this same thing and most just don't listen. I do have one great friend that does know and understand the pain that I have and I thank the angels for her. As many of you have probably found out we all have alot of friends but we are truly blessed when we have a "true friend". Thanks again for the advice.

 
Old 05-12-2004, 08:46 PM   #6
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waiting4acure HB User
Re: How To Talk To Family

We all truly care and truly understand. It's a shame we are spread apart for the most of it. You never seem to have a "Healthboard" neighbor or coworker nearby. HA! That would be great. Compassion, understanding, a wonderful ear and great advice that we know comes from experience!!
Take care...gentle hugs!

 
Old 05-12-2004, 10:04 PM   #7
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Join Date: Mar 2003
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SnowyLynne63 HB User
Re: How To Talk To Family

Kass,i think they were just kidding.Guys do that at times not thinking..............

 
Old 05-13-2004, 03:24 AM   #8
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Join Date: Apr 2004
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typingterror HB User
Re: How To Talk To Family

Kass, that was great about the tombstone...sick humor which we can all relate to. Thanks. I will have to share this with my fibro buddies. We may be down, but we do have a gift of learning to laugh at ourselves through the tears which gives strength to others in same boat. Laughter always lessens the pain. We may forget important things, but we always remember something that has lightened our load and keep going back to it for self-therapy. (TT)

 
Old 05-14-2004, 04:32 AM   #9
emu emu is offline
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emu HB User
Re: How To Talk To Family

A Letter to Normals from one in Chronic Pain:

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, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about school, my family, my 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!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. 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. 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 everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.



Please understand that chronic pain is variable. It's quite possible (for many, 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 next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down,lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.



If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

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, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

 
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Jayds (12-18-2011)
Old 05-14-2004, 07:42 PM   #10
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Join Date: Apr 2004
Posts: 8
kass HB User
Re: How To Talk To Family

Thank-you so much for this letter. I'am printing it out now. I hope that I can find the courage to give it to my family and that after they read it they will understand more of what I'am going through. Thanks again.

 
Old 05-15-2004, 10:51 PM   #11
Senior Veteran
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Join Date: Aug 2002
Posts: 624
Wes1212 HB UserWes1212 HB UserWes1212 HB UserWes1212 HB UserWes1212 HB UserWes1212 HB UserWes1212 HB UserWes1212 HB User
Re: How To Talk To Family

[url]http://www.healthboards.com/boards/showthread.php?p=875726&postcount=1[/url]

this is a link to a letter that i have seen people use to try and inform those who do not understand "invisible illnesses" and the effects on the sufferers. maybe someone can find it useful here.

well, links arent working here, so i will just paste the letter:

A Letter to Normals from a Person With Chronic Pain

Having chronic pain 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 chronic pain and its effects, and of those that think they know, many are actually misinformed.

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, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about school, my family, my 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!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. 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. 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 everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.



Please understand that chronic pain is variable. It's quite possible (for many, 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 next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down,lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.



If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

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, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

Last edited by Wes1212; 05-15-2004 at 10:52 PM.

 
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