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Veteran Member

Date Joined Dec 2004
Total Posts : 921
   Posted 6/24/2005 10:07 PM (GMT -6)   
I lovingly "adopted" this from a post on the Fibro board, thanks Flopsie
I look normal. Don't let my outward appearance fool you; I am in pain. I am not the same person I was a year ago, or 2 years ago, or 4, depending on when it last was you saw me. I look healthy. I am not.
My condition changes from day to day, sometimes even hour to hour. Today I might be able to walk with you a few miles; tomorrow I may not be able to get up off the couch. A week ago, I felt almost human; next week I may feel like something less than what the cat drags in. I may want to do all the same things I use to: to work out, take long walks, socialize, keep some sembelance of household order, but I may not be capable of it.
If I say "maybe later", please understand and accept this for what it is, which is not an excuse, it is a reason. I don't enjoy my new limitations; I hate it. I might even be physically able to do today what you wish for me to do, but if I know without  a shadow of a doubt that pleasing you will mean for me later an incredible amount of pain, I must say no. I'm not lazy. I just hurt.
I absolutely do not want pity. There is no reason to feel sorry for me--life is not perfect, and life happens to us all. This is the hand I have been dealt, and I intend to play it out. I don't blame the world for what I suffer, I don't rally against God. This is no one's fault. Not even my own.
I do not crave attention. I didn't decide one day that I was tired of living like a normal person, and that the means to a life of never having to work, having my whims catered to, having friends and family treat me special, involved creating symptoms no one could see under a microscope. I loved my life the way it was; I was never depressed and I had plans. This isn't a cry for your attention. It just IS.
I don't feel sorry for myself. Why should I?, Things don't always work out the way you would like them to--this is one of those times, I can live with who I am now. I may not enjoy each day as much as I use to, but I still live for each day, and embrace whatever I can get out of life. Pain is my companion..but pain is not me.
The truly hard part--if you can not accept me for who I am now,
I am sorry for you. I won't waste precious energy chasing after you , to cling to a friendship that probably wasn't as strong as I had once believed it to be. I can not force myself to readopt who I was before and reassume the same roles. In this--preserving myself and my state of mind--I have to be selfish. If you can not accept that I might not be able to contact you every day as I did before, or engage in the activities we once did, whether it was traing together and working out together, or just bowling, then do me a favor, and let's quietly part ways with no ill feelings. My life is going in new directions, and for me that might not be a bad thing. If the changes I have gone through disturb you, hold your criticism. I don't need it. I don't want it
Life deals us all a bad hand occasionally. This is my turn. It happens. I accept. I hope you do too.

Sara-Migraine/Headache Forum Moderator
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Tracey D
Regular Member

Date Joined Jun 2005
Total Posts : 54
   Posted 6/25/2005 2:34 AM (GMT -6)   

That is one brilliant letter. I suppose that is exactly how we would all like to express ourselves to our loved ones, especially those who never seem to understand what it is like for us.

Congratulations on such a true meaningful letter.


Veteran Member

Date Joined Dec 2004
Total Posts : 921
   Posted 6/7/2009 10:16 PM (GMT -6)   
..I just ran across this from 2005..thought I would "bump" it up :-)
Sara-Migraine/Headache Forum Moderator
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ER Treatment Form

Veteran Member

Date Joined Jun 2008
Total Posts : 903
   Posted 6/8/2009 4:24 PM (GMT -6)   
Wow Sara, Thank you. I know I could have used this before; especially when I learned that control was something I no longer had, and no longer needed. It is true too, you learn who your real friends are!

Veteran Member

Date Joined Dec 2004
Total Posts : 921
   Posted 6/8/2009 4:53 PM (GMT -6)   
Absolutely! I have not only learned to set limits for myself, try not to be disappointed about things when they don't work out (due to pain etc) but also that I will have to let go of people who don't understand or who make things more complicated than they should be.
Sara-Migraine/Headache Forum Moderator
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Regular Member

Date Joined Dec 2006
Total Posts : 53
   Posted 6/11/2009 9:49 PM (GMT -6)   
It's beautiful and perfect.  Thank you for sharing.  I've already passed it along.

Veteran Member

Date Joined Jul 2007
Total Posts : 1956
   Posted 6/14/2009 9:34 AM (GMT -6)   
Hi there - I usually hang out on the IBS and Ostomy boards....but my college aged daughter just experienced headaches during finals and I wanted to gain more info. Stumbled upon this topic and letter. Thank you for bumping up this topic!

I think it could be applied to so many medical situations - I know IBS would be one. I could have written such a letter myself. It is so hard when a person "looks" healthy on the outside but isn't on the inside. Therein lies the problem. To the rest of the world, they think we can keep going, doing everything we used to be able to do, eating or drinking what we used to, and have no problems. Ha, if only that were still true....

Thanks again for bumping up this topic!

Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!

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