Tuesday, March 27, 2012
This is an isolating disease but doesn’t have to be made worse by feeling stigmatized or even anticipating stigma.
From day one we were pretty open with everyone. We were lucky in that our medical team were adamant in their messages to us that we weren’t to blame; this is a genetic predisposition and that it is a serious illness which was going to take a lot out of us as a family. Hence, we went on the front foot and told d’s close friends so they understood, weren’t frightened of what was happening, and could support her - which they have in spades and many times is exactly the right way.
Our friends and work colleagues likewise we were pretty upfront and I have to say I am yet to encounter any negative or particularly ill informed responses - but they do the get the full, "my daughter is seriously ill with an eating disorder;it is fascinating, but research now shows this is a brain disorder which is caused by malnutrition, so the treatment we are doing is restoring her to full nutrition as a family and it is the hardest thing we have ever had to do as a family" .
I often reflect on my own ignorance about eating disorders prior to our own experience and matter of factly describe some of the nuts and bolts of what we have to do to re-feed and put boundaries around d to prevent exercising. Most people have been really interested in our story and appreciative of the fact we have demystified eating disorders for them. The spin off has been an openness to asking us how we are doing without feeling like we are uncomfortable talking about it; and, the sometimes downside has been a lot of disclosures about their own encounters with eating disorders, personally or with family members.
-Goingtobeatthis from the thread When-to-tell-people-and-what-to-say...