There is something elusive in the nature of the illness such that unless you live it, or live with and care for someone who does, it's almost impossible understand or describe. You might come close after decades of treating patients. At every turn, language fails.
People, encountering someone with a disability and therefore aware of their own vulnerability, may become dismissive or fearful. Fears for themselves, fears for me and about me. Who knows? Is ME/CFS genetic, environmental, viral, or what?
The difficulty accepting uncertainty is just as strong today as it ever has been. It leads now to excessive testing, quack treatments, and blaming the patient. We need to expand our frontiers of knowledge, but also to recognize our limitations and do the best we can within them.
'It is all in your head' is no more helpful an answer to the patient's puzzling and troubling question than were 'the spirits are angry' or 'the gods are punishing you' or 'your four humors are unbalanced.'
If you live with a chronic illness, only you are capable of making the wisest choice possible based on many factors. If you love someone with an illness, be cautious in sharing your opinion about his or her decisions.
By now, many of you have heard news reports about the PACE study out of the UK, suggesting that cognitive behavioral therapy and exercise are helpful for chronic fatigue syndrome, and misguided and misinformed media reports suggesting that this shows that the illness is all in people's minds.
When you have CFS one of the greatest battles you fight are the ignorant smirks and expressed disbelief of those who think it's all in your head; that is, those that don't live with you and live the truth of CFS everyday.
If you have weakness, fatigue and pain with no identifiable physical or psychological cause, your unconscious brain may be wreaking havoc on your insight due to the anxiety that you cannot feel as anxiety.