hurtingallthetimet
Senior Member
- Messages
- 612
whats sad is that so many say "but you look normal you cant be sick" thats very hurtful...i dont know of anyone that would say that to someone with another illness that cuases similiar symptoms etc..
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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How Do You Describe the Symptoms of ME/CFS to Others?
- Thread starter mfairma
- Start date
warriorseekspeace
Senior Member
- Messages
- 141
- Location
- Florida
in a crash, like meningitis
fever 100
eyes and head swimmyon fire
fever 100
eyes and head swimmyon fire
Nielk
Senior Member
- Messages
- 6,970
whats sad is that so many say "but you look normal you cant be sick" thats very hurtful...i dont know of anyone that would say that to someone with another illness that cuases similiar symptoms etc..
Yes, act the way you look - not the way you feel!
Describing how bad our symptoms are will always sound as if we are exaggerating. People also like "bravery" from sick people so it goes against us that way too.
Now that we have so much hard evidence of what is going wrong in ME we can answer the question in a factual manner (and blind 'em with science!)
Say that the mitochondria, the batteries of our cells, are damaged so our muscles don't work, our hearts can't pump out enough blood if we try to exercise and our nervous systems and brain are screwed up.
Let's face it, we can give references to the scientific papers which describe all these things. Just because the deniers have the political upper hand does not mean we have to make life harder for ourselves by ignoring the research the way they do.
Mithriel
Now that we have so much hard evidence of what is going wrong in ME we can answer the question in a factual manner (and blind 'em with science!)
Say that the mitochondria, the batteries of our cells, are damaged so our muscles don't work, our hearts can't pump out enough blood if we try to exercise and our nervous systems and brain are screwed up.
Let's face it, we can give references to the scientific papers which describe all these things. Just because the deniers have the political upper hand does not mean we have to make life harder for ourselves by ignoring the research the way they do.
Mithriel