The Massachusetts CFIDS/ME and FM Association recently conducted a survey of patients about their relationships with well family and friends (and the outside world in general), asking "What do you want well people to know?" The results are interesting; many of the comments really resonated with me.
ProHealth published this article on What CFS Patients Want Healthy People To Know, based on the survey results. The article is a bit long and somewhat repetitive, but overall a great summary of our typical interactions with the outside world. I shared the article on Facebook with my family and close friends - I think it is easier for them to hear some of this from a generic source like this survey rather than from their sick loved one directly.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
That's a great article Sue. I hope you don't mind, I'm going to re-post it on my blog as well.
ReplyDeleteHappy New Year!
Share away, Patrick!
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