Gwen came across a letter the other day that seems to describe everything she feels and put everything she has in thought, into words. It brought tears to my eyes as I have heard Gwen say these same words. This letter was shared by Elizabeth Casburn Brown originally. I hope that each of you that read this can now understand what it is like to live with CIDP. Although, this letter was written by a lady when she first started dealing with Parkinson’s but it applies to CIDP as well.
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 IS.
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 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 it. I hope that you can, too.