Jenny

Anonymous
December 4, 2007 at 11:42 pm

I’ve lived with Sjogren’s Syndrome for five years and now in last six weeks have been diagnosed with CIDP.
I’m freq. told, “but you look just fine and act fine and what do you mean you can’t do it?” “Tired, take a nap and it will go away”
I’ve learned to not even try to explain anymore and live within my limitations. I don’t think people can really understand if they do not have a frame of reference and having a cold or the flu once a year does not give one a frame of reference for a chronic illness.
Even now see me walk like a sick duck, picking my feet up and being on a walker it is hard for people to relate. I know they care for me and want the best and really can not understand and are uncomfortable with the changes.
Hopefully if they can see me react OK, they will get easier with the limitations.
Good luck to you.