On a personal note, I experienced a surprising reaction from some of the CFS patients that I spoke with. One of them commented that I didn't "seem sick" and another said that I "looked pretty good for someone with CFS".
OMG! That's... that's... I'm dumbstruck.
Maybe they wandered in from some other meeting. I can't quite wrap my head around another patient saying that in 2009!
If you have MS no one expects to be able to see evidence of your illness. Nor do they if you have virtually any other illness. People are not advised to do a breast self exam if they start to look peeked. Nor are they advised to get a CAT scan if they find themselves looking drawn. Why we have to look like death is beyond me.
I am very pale. When I feel ill or tired, I'm terribly pale. The first time I went to the doctor without any colour artfully applied to cheek and lips she commented on how pale I was, checked my records and said: You're not anemic. Then, as she watched, I coloured myself in. I hope she remembers but I doubt she will.
I am also reminded of the time my brother told me about a friend of his who has MS. He, with tears in his eyes - he's very sentimental, described how, even though she has MS
, she smiled bravely and leaped into the air. She has RRMS, has lost no functioning and has been in remission for years. But, she is seen as being very brave, and more than a little inspirational, because she jumps into the air. If we were to jump into the air, it would be proof positive that there's nothing wrong with us.
One expects this from brothers. One does not expect it from other patients. I would suggest, if I may be so bold, that you be ready to say, "You too!" should it ever happen again! Pay not attention to what they happen to look like, that's of as little consequence as you looking good. Just say it.
Thanks again for all your hard work!
Peace and patience,