It's really hard to explain to someone who hasn't been in this position to understand why "You don't look sick" is hard to hear. I understand you mean well. The issue for us is that it's often a denial of how ill we are, eg, you can't be that sick, you look great! I get that too,"Gee, you look good, you must be feeling better!" After so many years, I don't want to get into it anymore. I want to say,"No, I can hardly stand up and all I want to do is lay down, my back is killing me, my muscles aches all over, I have a fever and a headache, and the bright lights and noise in here are blowing my head off." This was during a wedding of my husband's best friend that I absolutely had to attend, or I would have been home in bed. Would you really rather feel this way for many years as long as people say you looked good? Think about it. In the meantime, stay well. If you run into someone who you know is chronically ill, just say, "Hello," or if you know them a little better,"How are things?"

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