how to explain ME/CFS to people

[leelaplay]

Explaining ME/CFS to others is one of the things that I find difficult sometimes, especially when I'm tired. I'm trying to memorize a compact message so that I don't have to think. I've searched and haven't found a thread on this - hope I haven't missed it. I vaguely remember talking about this a bit when I joined the forum two months ago and it was helpful.

I'd be interested in what others say.

The quote I'm trying to memorize is from Dorothy Wall, author of Encounters with the Invisible (a book on her ME/CFS experience and more):

When people don't understand my illness, I always give them some brief information about the organic nature of CFS, such as: "For many people, CFS is triggered by an infection of the central nervous system, and when the brain is affected, it in turn causes dysregulation of other body systems, so that my endocrine system, immune system and autonomic nervous system all don't work right."

I emphasize that my body doesn't work the way a normal person's does. This takes the conversation out of the realm of will-power or laziness.

islandfinn

 

[caledonia]

I just tell people I have an autoimmune illness similar to MS, or that I have immune system stuff going on. I just keep it short, simple and kind of vague. Any more and their eyes glaze over with confusion or disinterest.

 

[rwinsmom528]

Kinda feels to me like heart failure, MS, adrenal insufficiency and acquired immuno deficiency all wrapped up in one.

 

[hurtingallthetimet]

i really dont try to explain...ive treid with extended family they act like its nothign and i should be active like i use too and i just cant...im my experience its been negative lost friends...ahd to quit job.. etc..etc...i hate it...

no one seems to take these illness very seriously and they are so debliltating...i stay on couch or bed constantly...in pain and fatigue...

 

[Carrigon]

I've tried many times over the years to explain this illness to people only to never get past the name of it. Soon as they hear the name, they zone out on you. And then you get the idiot comments of "I get tired, too." or "My cousin's grandmother's great niece's sister in law has it, too, but she works full time." And the billion other idiot comments. So now when ever possible, I will not say the name. I say Advanced Lyme. That carries more weight, and in my case it's true anyway. I was bit by ticks as a child. They believe Advanced Lyme. They might tell you they didn't know it could be that serious, but they believe you. They still walk away puzzled at how it can make you that sick, but they don't treat you like you're a nut.

 

[donnie1234]

I just say i am recovering from glandular fever. Most people know how long and hard that can be in some instances and therefore can normally relate. If they ask for how long, depending on the person, i may or may not tell the truth. Ive been lying and manipulating moronic doctors to get specific treatment for so long its quite easy; combine that with the fact that i couldn't give a damm what people think anymore. When i first got sick i was just 16 and no one believed me--doctors, family, friends--it was so desperately lonely. I cried and i begged and no one helped me. Now that im 31, im still very sick but also very strong and independent emotionally. So basically, i tell them whatever the hell i want

 

[Wonko]

tell people? what people!!

 

[floydguy]

Keeping it short and simple is the best way to go. I tend to say something along the lines of an auto-immune disorder similar to MS.