Reply To: Have you forgotten I have CIDP?

October 12, 2012 at 4:20 am

What you said was so true. I just have been recently diagnosed with CIDP yet everyone expects now that I have the diagnosis after two long years I can still live and do all the same things I am used to doing. Nothing has changed. Even after I explain to them about CIDP the general answer comes well, at least now you can begin a treatment plan to get better. They fail to realize sure I was diagnosed but I have all the same issues (symptoms) I had before. Now I am at the point that it is not even worth the effort to explain to anyone why I can’t go shopping all day, why I feel so fatigued. And I do not want to tell anyone because the last thing I want is pity. You are so correct when you said the words it is a cousin of MS. That I am hoping they will understand. You are very grounded in that you have this disease but you are not defined by this disease only the limitations it places upon us. Never have I felt more alone than I do now so I am trying to work on educating myself about this, realize my limitations but I still do not know how to make people understand without them thinking I am looking for pity. Sorry for the rambling but your post really stood out and helped me today. For that I thank you. If you ever want to email me I am at I don’t know how this site works yet but thought I would give my email address in case you just needed someone to listen to what a rotten or wonderful day you had. Thank – you!! Cindy-Lou.