It’s going to be less scary
now that you know what it is you are dealing with! There are treatments, the fine tuning of those should be what you have to learn about now tho, for the short and long term.
Ask your doctors if prolonged predisone use is really the best way to go for someone your age. I only say this as I’m going thru a rapid osteporis set of issues [I’m in my 50’s and was very active ’till this’] and prednisone, and the pain meds used for our pains [anti-epilepsy/seizure meds] are well known to decrease our calcium asporbtion abilities at any age.
There are others here who have gotten CIDP at far younger ages than I so I hope more will speak to this issue.
As for getting others to really understand? Well, I do know no one in my family had a clue other than “is that like MS? That’s not good is it?” Well, in a way it is like MS in that the ‘demeyelinaton’ occurs. In MS it happens in the brain, in CIDP it happens at the nerve endings…What I did was send out the NIH info sheets on CIDP to family…and then let them think on it. Another was the ‘diabetic peripheral neuropathy’ info sheet. For some reason, diabetic neruopathies are called Painful neuropathies, when others aren’t. I hope this gets others at least into the neighborhood of what all you are dealing with! It’s a complicated and painful disease. It takes a lot of educating. I know the GBSFI has lots of information that can help folks understand. First tho, YOU have to understand. Then be sure you get the treatments, medications and therapies you need to actually have a life!
I have faith that you will!