I found a suggestion to call FM/ME/CFS "SEID" for Systemic Exersion Intolerance Disease. Most of you have probably heard of that. None of those names sound serious enough to indicate the painful and disabling nature of this disease. I feel ridiculous out doing errands or making appointments on the phone, explaining to people that I have a debilitating illness (23 years now) when I look fine on the outside. No cane, no wheelchair, no missing limbs, no bald head. I'm so grateful I don't have cancer, MLS, MD, paralysis or other life-threatening diseases. Yet, I'm NOT ok. Most people understand my explanations, but I feel SO guilty because I can still walk some (but NOT stand, like stand in line). How do some of you handle interacting with the public, that this illness is very real, very painful, very debilitating and damaging, but utterly invisible?