Dear Karen & others afraid to speak their minds:
     I see that a section for caregivers has just opened, and that's great, but I'm concerned that some will still hold back when what they really want to do is SCREAM! From what I've seen since joining, this is generally a caring, supportive group, although I have occasionally been surprised to see a discussion get a little hot under the collar and even degenerate into name calling. The thing to remember is that even when we don't like or agree with what someone said, it was probably said in a spirit of sharing and an effort to help.
     One problem is that we can only see words. We're left to fill in the emotions and facial expressions behind the words... and sometimes what we pick depends on our own mood or issues.
    There's a whole range of people chiming in - some who've been through or are going through what you're going through and could say, "That's exactly how I felt (feel)!", some who have regrets about the way they felt or acted and think they can spare you their regrets, some who have lost loved ones and would sooner go back to the dark days of treatment and recovery than be without them and would rather feel your pain than theirs, and some who truly have no clue where you're at.
    If the advice doesn't help, discard it, and don't take it personally. When it comes to what you're going through or feeling, you should feel free to speak your mind and don't worry about being judged. Anyone who would be judgmental is dealing with his own issues... not yours. When it comes to what others are going through, of course tread more lightly. You know how it feels to be hurt.
    Just keep in mind that the person offering advice is also walking a fine line not knowing how his words will land on your ears (or eyes in this case). I see this all the time as a pediatrician. Whenever I tell a mother of a sick kid that her child is okay I have to consider whether my words reassure the mother, dismiss her concerns, or close the door to further discussion or reevaluation. They're the same words, and I always say them gently, but sometimes they miss their mark
