Reply To: Explaining GBS to others
I think it is impossible for someone who has never had it to understand. I’ve not been able to adequately explain it to people because I can’t think of anything to compare it to that would help truly relay the physical sensations, and never mind the emotional devastation! The closest I’ve come is to let people know that what they see on the outside is different from what is going on inside. It’s the stuff you can’t see that can be far worse, especially after you become mobile again.
Re the nurse’s total lack of understanding…my ICU nurses said that they had only seen one case of GBS in their entire career (12/18/21 years). A few had never seen it before. Sometimes, they lacked patience with me but overall were pretty good. The general ward nurses, on the other hand, were pretty terrible.
I am so happy for you that you have such an understanding and supportive husband. Love that he sticks up for you and provides a shield between you and someone with so little understanding of the disorder.