Purple
Bundle of purpliness
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I think it's very hard to get an illness - any illness - across in pictures. Videos can do a much better job.
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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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This floors me. I can meet people and see they have this or fibromyalgia. There is a look on their face that no one else has, a bit of shell-shock and disbelief and tiredness. I've gone up to people I've just met and discreetly begun a conversation and sure enough... they are living this. Why can't others see it?
A photo then with a capation: Waiting to have a life again. ?
Hows about taking individual pictures that depict the symptoms and experiences of us?
LaurieL
This floors me. I can meet people and see they have this or fibromyalgia. There is a look on their face that no one else has, a bit of shell-shock and disbelief and tiredness. I've gone up to people I've just met and discreetly begun a conversation and sure enough... they are living this. Why can't others see it?
Totally agree GracieJ. I've noticed for decades now what I call "the look". I almost always see it in the eyes -- the pain, the exhaustion, and more (sort of undefinable in a way). An article that was posted on the ProHealth board talked about a husband and wife team who have been long-time advocates for pwCFS. As soon as I saw the accompanying picture of Bob, I knew IMMEDIATELY he has had CFS (long-term). Here's a link to the article and picture:
Know this dosnt help with the photograph question
But just wanted to add,as Taniaaust1 said on my worst, confused,brain fog days others can see it written
all over my face.
I could see it in that guy Wayne..