I haven't posted for a long time on here but I really can relate to this post. I haven't found a way to make people really understand this disease and I've had it for 38 years. My husband is very understanding for the most part because he sees all the daily struggles I go through and his life has been completely altered by this illness as well.
My grown children don't really get it and we have both tried our best to explain it. We've sent them articles and given them videos but it just doesn't seem to get through.
I know it's not an easy disease to understand, and like other posters have said, we don't understand it ourselves but we don't have a choice but to believe it, because we live it!
I don't want understanding as much as I want them to believe me. I think that's the hardest part, not having those close to us believe us. They will say they do, but it's obvious that , at times, they wonder if we're really 'trying hard enough to get well'.
My kids will call me and tell me all their troubles but most of the time they don't even ask how I'm feeling. I guess it's just a given that I'm feeling bad but it would be wonderful to have someone inquire once in a while. I know it sounds like we're into self pity, but it's not that. It's that all people have a need to be loved, respected and accepted.
CFS make you have to shut yourself off from most of the activities of life but it's not a choice we make. We are victims of a disease. A little compasion would go a long way. I wish family and friends could understand that even though we can't be involved in the family activities we still want to be included, even if it's a phone call or email to share their life with us.
This is the lonliest disease I know of.
Chronic Fatigue Syndrome and Fibromyalgia since 1978. Also, O.A. IBS, Hypertension, Hypothyroidism, Pelvic Prolapse, Small Brain Cyst, Tremors, Type 2 Diabetes, Chemical Sensitivities, Sleep Disorder, Allergies, Ocular Migraines, Curved Spine, Degenerative Disc Disease.