Chronic Pain Letter

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Cookie122
Regular Member


Date Joined Apr 2008
Total Posts : 61
   Posted 4/30/2008 1:40 PM (GMT -6)   
Hi Everyone! This letter was posted on another chronic pain support group site and I thought it was worth reposting here. I copied the letter from David Garrisons post on raceagainstpain.com (trying not to plagerize). I do not know who the original writer is unless it is David. Please read it and pass it along to anyone you thing can benefit from it. The letter is a little long.

:-)

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 things, 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.


ElenorRigby
Regular Member


Date Joined Dec 2007
Total Posts : 97
   Posted 4/30/2008 11:52 PM (GMT -6)   
I am astounded at how well the writer was able to describe pain and the lack of understanding of chronic pain in such a realistic manner. My husband certainly understands my pain, but my parents are in and will probably continue to be, in the "denial" stage forever because they see me work, wear make-up, look presentable, talk correctly, etc. It frustrates me immensely that they simply refuse to understand that I have had chronic nerve pain for 9 years now (Atypical Trigeminal Neuralgia). This letter inspires me to want to write a similar one to them, because just merely saying "I'm having a severe pain day today" just doesn't seem to sink in to them. My parents have just simply rejected the reality of my pain. Thanks so much for posting that letter cookie122. Hope it will inspire more people to write a letter to someone who doesn't understand.

crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted 5/1/2008 1:42 AM (GMT -6)   
cool  Hello Everyone @ healing well,
 
cookie that was great written work....
 
I would like to make a copy for me, theres alot of really good stuff in there.  things that alot of people could realize at least some of the dificultys on an average day.
Thanks for the copys.
                       
                    Have A Pain Free Day All!!!!!!!
 
                                      Mike
 
 
 
 
 

 

Muzz
Regular Member


Date Joined Mar 2008
Total Posts : 395
   Posted 5/1/2008 9:14 AM (GMT -6)   
A very good letter, hopefully many ppl will gain a better understanding of CP after reading it. TY for posting it, cookie.
I am not my pain, it does not own me.


Cookie122
Regular Member


Date Joined Apr 2008
Total Posts : 61
   Posted 5/1/2008 11:35 AM (GMT -6)   
I thought it was a real good letter too and worthy of copying and pasting it for everyone on this site to read and pass along. Everyone is more than welcome to print it and pass it along. I wish I could give credit to the original writer, but alas I don't know who it is so I tried to give credit to the person who brought the letter to my attention instead.

Hopefully it will bring insight to people who don't believe in chronic pain.

Toritoo
Regular Member


Date Joined Apr 2008
Total Posts : 184
   Posted 5/1/2008 9:04 PM (GMT -6)   
yeah WOW what a great letter this is and not only for family and freinds but for our own dr.s. The reason I say that is the last appt. I had with my CP dr. just happened to come at a time that I had recently had a great haircut and  a new out-fit on and I also had tried out some make-up samples that I had got through the mail. Not to sound vain but I looked good that day. My pain level was at the 7-9 level most likely because of going for the hair cut and going to the store to buy some much needed new clothes but when my dr. came in she said to me that I looked good. Maybe I did but it did not have anything to do with how I felt which was very bad.
My dr. saw me for about 5 minutes and said she thought we should go down on my percocet from 8 daily to 5 and only then would she go up on my pain pump meds. I said no way could I go down to 5 pills a day because most days I needed to take 2 pills at a time to get any relief from my break through pain. I ended up leaving the office on the same meds I came in on. I was frustrated and scared of the month to come because it had been a bad month on the meds I was on.
So apparently if I go to the dr. looking like someone dragged me through a hedge I would then merit a doable medication change. I have an appt. next week and you can bet I will not be going in there looking "good". Old clothes, messy hair and definitly no make-up for me.
It's sad though because sometimes a new hair cut or a new out fit can lift our spirits if not lower our pain levels and as it said in the letter on days that I seem happy and feel a bit better about myself does in no way mean that I am not in terrible pain.
 
Thanks for sharing the letter with us as I am sure that right now people are copying it and handing it out to the people we love and love us to help them understand what is really going on.
                                       Toritoo 

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/1/2008 9:14 PM (GMT -6)   
Toritoo - I found myself reaching the same conclusion re: doctor visits. I guess it's easy to see how friends or family could see us "lookiing good" and jump to the next step that we must be feeling good, too. That happens all the time, to the point anymore I don't try to contradict it a lot of times. Too much energy. But one would think our docs should know better, but we can't count on that either. So get out those old clothes and wipe off that make up! I've even thought about taking the cane I still have from my back surgery just for doctors appointments. My luck somebody would be taking those sneaky videos others have reported and then bring it up at some disability hearing to say see - she only takes the cane to the doctor's office....she's really fine!

I think nerve pain is what I call the invisible demon. It doesn't always show to anyone else, but wow it sure can ruin a life!

The one thing I wish the letter would have also mentioned is the financial ruin many of us go through, the difficulties with getting SSD, etc, but overall I thought it was great.

PaLady

Cookie122
Regular Member


Date Joined Apr 2008
Total Posts : 61
   Posted 5/2/2008 1:58 PM (GMT -6)   
I think everyone definitely made some good points. Hopefully with whatever new president we get there will be some nuch needed healthcare reform so it will be easier for all to get the care they need.

Best wishes

lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 5/7/2008 8:53 AM (GMT -6)   
cookie,

Thanks for sharing this letter with us and as all agree, it is oh so true. I made a couple copies - trying to get my "caretaker" to read it, but nooooo. Maybe later.

How are you & your pain today? Good I hope!
Do not forget to entertain strangers for by so doing some have unwittingly entertained angels.  (Hebrews 13:2)


mala407
Regular Member


Date Joined Mar 2007
Total Posts : 103
   Posted 5/7/2008 10:18 AM (GMT -6)   
cookie,

Thank you so very much for posting and sharing this with us. How true every word of it is!!! I am definitely going to make a copy, hugs!

Mala
26 years old, living in Chicago, Chronic abdominal wall pain due to nerve entrapment. I have IBS-D and neuropathy. Gall bladder removed, 2 failed exploratory nerve surgery, pancreatitis, several hospitalizations for IBS flareups. Medications: Welchol, Align, Lunesta, Oxycodone, Thiamine, Zyrtec-D
 
I am a dance teacher and choreographer who loves children and cats! I am to be married on June 27, 2009 to my wonderful fiance Jon!!


Cookie122
Regular Member


Date Joined Apr 2008
Total Posts : 61
   Posted 5/7/2008 1:12 PM (GMT -6)   
Hi Lassie, My pain is ok today, but my right arm is still feeling weak and twitchy. I made a drs. app. for it so we'll see how that goes on the 21st. How are you doing?

lassieluv
Regular Member


Date Joined Apr 2008
Total Posts : 254
   Posted 5/7/2008 4:33 PM (GMT -6)   
I wish you didn't have to wait till the 21st for your Drs appt. Glad to hear your pain is doing okay though.

Right now I'm doing pretty good, relatively. I go in for my trial SCS next Wednesday (14th). I am so looking forward for some relief. I will keep you all posted. Keep me in your prayers - I know you will, and thanks.
Do not forget to entertain strangers for by so doing some have unwittingly entertained angels.  (Hebrews 13:2)


Cookie122
Regular Member


Date Joined Apr 2008
Total Posts : 61
   Posted 5/8/2008 1:16 PM (GMT -6)   
Lassie, You're always in my prayers along with everyone else.

Another thought along the lines of the letter. Has anyone heard of something called "Walk a mile in her shoes"? Its where men walk a mile in women's heels to help raise awarness for rape and abuse towards women as well as raise money for those types of organizations. Anyway it was funny seeing big macho guys wearing heels and walking better in them than I ever could. But I was thinking what if we had a similar thing... "Walk a day in a chronic pain persons shoes". We could devise something up that caused a person some amount of pain and they would have to wear it all day or even a week without taking it off. That way they will what we feel everyday. Maybe it would shut some of the people up.

JoBobB
New Member


Date Joined May 2008
Total Posts : 14
   Posted 5/27/2008 5:47 AM (GMT -6)   
that letter was originally writing by bek oberin. there's a page of letters for different other things too like ms and fibro. the author is unknown probably becuase the page says the pain one was changed without permission of the original writer. http://notdoneliving.net/foothold/openletter/options.html

wmnak
Veteran Member


Date Joined Jul 2006
Total Posts : 1123
   Posted 5/27/2008 4:29 PM (GMT -6)   
great idea, cookie, but it would never work. people can laugh at themselves cross-dressing or even with a "maternity girdle" (that device that makes people feel like they're 8 mos. pregnant). But i don't believe that anyone could or woould live with the pain that most of us suffer for more than a few hours. we, on the other hand, don't have any choice. we have toi walk in our own shoes.

warren
That light at the end of he tunnel?  It's an on-coming train.
 
 


JoBobB
New Member


Date Joined May 2008
Total Posts : 14
   Posted 5/27/2008 7:27 PM (GMT -6)   
i could never ask anyone to put themselves in pain on purpose, even a little bit for a short time. even when i get so angry with people that dont get it, i never wish 1 bit of it on them even secretly.  i would wish people dead before id wish them pain.
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