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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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(general) How do you deal with the outside world ?

YippeeKi YOW !!

Senior Member
Second star to the right ...
But if I tell people I have a neuroimmune disease or condition, this seems to appease their curiosity, and settle their questions
That's become my go-to as well, when I'm in a situation where some explanation is necessary. I expand it slightly to neuro-muscular autoimmune illness, because of the pronounced muscular/joint issues and pain that I experience intermittently.

Any you're right .... it does seem to satisfy their curiosity and also seems to sideline any further questions and probing ....


Senior Member
Old age helps! Folk understand old age limitations. I am all but 80 and that where I live is deeply respected. Small offshore island. And I am now the oldest of our 12 residents. They support THAT and help ...ie shopping done etc. And a short chat at the garden gate and the hats etc I knit.... and that I care for the cats no one else does eg bereavement orphans. Writing this with great feeling as recently some very ascerbic contacts with the wider world online have let me see what it can be like beyond my narrow span. It emerged that some were bitter and ENVIED my lifestyle and have no idea re my struggles etc. ie i have been in my quiet refuge apparently too content in my online journals etc. We really cannot win! But I intend to go on not grousing as I know that here and with my close family and my doctor I am supported. I need no more than I have. And recent events outside the area eg hospital and transport have shown me that my doctor who I have had little contact with is deeply and quietly supportive. Strength is waning as I age. And I seek no more than I have. I am safe.