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Explaining CFS to Family Members

Messages
87
Does anyone know of a website or short pdf file that goes over ME/CFS in a way that will help family members and friends better understand what this disease is like?

Im so incredibly stressed out from dealing with my friends and family trying to explain what I am going through. They mean well, but its tough always having to deal with their "expert opinions" on what will help me recover. They are constantly pushing me to get up and go out, exercise, engage socially, and I just cannot do it. Then what typically procedes is a big fight about how important mental toughness is to beating any disease and how I need to "FIGHT!" if I want to get better. It's absolutely exhausting. Would be awesome if there was something out there I can show that will help them better understand this illness. Losing my mind over here.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I suggest to get them to go and read the Canadian Consensus Document overview http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf . It also has a chart in which clearly shows our our bodies respond differently to exercise then "normals" which is all referenced by studies as well. (this overview also comes in booklet form if you contact a ME/CFS society you may be able to get it in this way too.. great for leaving with a dr). I know the Sth Australian society used to sell this overview book for a gold coin donation (I assume they still have this).
 

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
I also have this problem Xhale, and it's one of the worst parts of the disease for me, really. Precisely, today I got really angry and frustrated because my wife couldn;t understand that I was uncapable to clean the house and move some furniture without doing pauses to rest... he doesn't want to hear about my disease, not because she doesn't care about me, but because she can't resist the pain that would cause her to acknowledge that I'm suffering so much. But I really would like that she understood my reality... that would make my life so much easier, I would be very happy :(
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
I so hear you. My family don't get it at all.

Peggy-Sue suggested this article
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
This is a great analogy for the energy conservation/management we need to do....

I also like the short video clip of Dr Charles Shepherd explaining it - I think that is on the uk ME association website, but I haven't managed to get my family to actually watch or read anything (my partner aside).

There is so much misinformation out there that we start from a long way behind zero in trying to achieve positive information.

I hope that slow and steady and seeing it over and over will eventually win the day.
 

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
I always carry an ME/CFS Society information pamphlet in my handbag and when the need arises, I show it to friends, family and anyone else I come across who doesn't seem to understand. Much easier than trying to explain it myself. So far, people have been shocked by the severity of the illness and have come away with a better understanding of what I am dealing with and what my limitations are. It is a great aid for "expectation management" with friends and family.
 

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
nobody gets it... sometimes it's because accepting that it's real would mean having to help that person even by something so simple as listening to him, sometimes because it's to hard to believe that something so terrible is happening to a loved one and its not going to go away, when one can ignore that reality.
Perhaps on some cases I believe it's even because people believes that other people is so unethical that they can't believe anything anybody says to them if no proof is presented, and tends to believe that people will make up fake illnesses to take some advantage... they see people as if hey would behave like them. What do you think about this possibilities?
Sorry about my grammar, I'm not a native english speaker and my mind is not very clear at this moment