In my searches, I can across a letter that was written by another CIDP stem cell patient named Gwen Lanier. Her blog can be seen at http://cidpourjourney.wordpress.com/about/.
Reading this letter help me to realize that I am not alone in my struggles and there are others out there who are suffering too. The great thing about Gwen is she wrote a letter that describes the struggles of a CIDP patient in a way that I have never been able to. I feel it is important to share this letter, in the hopes that someone else may stumble upon this blog and find the same comfort from Gwen's words as I did.
TO FRIENDS AND FAMILY:
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 two years ago, or 4,
depending on when it was you last 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
even 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 used to: to work out, take long
walks, socialize, keep some semblance 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. This 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
again having to work, having my whims catered to, having friends and
family treat me specially 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
I don’t feel sorry for myself. Why should I? Things don’t always work
out the way you’d 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 used 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 cannot 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 cannot 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 cannot 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 training together and working out together or just
bowling, then do me a favor and let’s quietly part ways with no ill
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 it. I hope that you can, too.