Friday, December 30, 2011
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...
Thursday, December 29, 2011
I wouldn't recommend that sufferers read books about AN during recovery. There's an implied thought that if she just understood what was going on, she'd comply with treatment, eat more, understand why she has to eat more, etc. And it's just not true. Many adult sufferers have all the understanding and knowledge and insight and motivation in the world--and they still can't recover on their own. She needs structure in order to eat, not understanding.
Also, ED has a way of twisting things. Whatever she reads is going to be filtered by her ED. Very distorting. It's hard to undo bad ideas, especially when they are backed up by the imprimatur of print.
- Colleen from the thread Please-recommend-a-book-for-my-daughter
Wednesday, December 28, 2011
I have been selective in who I talk to, and I do it when I am in a position to include an explanation of the biological origins of this disorder.
Quite early I told my closer friends and my immediate colleagues at work. We told my husbands family, since he is close with his brother and his whole family had seen how thin our d was just before we started treatment. I told key people at my d's high school, because they needed to understand her medical status and because we needed their active support. My d told her closest friends.
What REALLY HELPED was getting educated about this disease. This knowledge made all the difference in my ability to be confident when I told people about it.
And here's what surprised me: We are not as alone as we might think! It seemed that almost everyone my h and I talked to had a story of their own - an adult child with AN, a son's girlfriend, a college roommate, a niece, one of my d's classmates..... In several cases I have been able to pass on info and resources that I can hope helped others.
- Jane77 from the thread When-to-tell-people-amp-what-to-say...
Tuesday, December 27, 2011
A real aha moment for me...was fairly early in re-feeding, when d was relatively compliant with eating but needed 24/7 attention. I took her and a couple of friends to a ceramic-painting cafe. Once settled, I went to sit a couple of meters away on a sofa with my book. I didn't get to read because I had to keep signaling d to stop exercising her legs under the table so in the end I just watched covertly. I felt dreadful for d, thinking how awful it was that a 14 year old had to be babysat in this way and couldn't just be with her mates.
I knew that a lot of people...wouldn't understand the necessity, seeing this as further evidence of the Controlling Mother. I noticed d kept looking at me and, after a few smiles, saw that her posture relaxed and she began chatting & painting quite naturally. The situation suddenly re-framed itself: I realized that, with my presence and vigilance, I had provided a 'forcefield' around d, so, for a while, ed couldn't get through. I was keeping her safe, freeing, not suppressing. I had a clear picture in my mind of how I was keeping ed at bay. A good moment.
- Red from the thread Light-bulb-moments!
Monday, December 26, 2011
I thought it could be helpful for families to have a thread where we share how our own awakenings have impacted our approach to caregiving.
For me it happened at our first appointment with Dr. C. When she talked about how families "burn out" from long term efforts to help their children recover, I had a renewed sense of purpose and urgency. While we didn't get answers to every question at that time, I knew that I needed to dig deep to find a way to keep myself strong in the battle. I had to figure out how to forgive the mistakes of the past--all of them. I realized that I couldn't spare the energy it took to stay angry at previous professionals, well-meaning [but uninformed] extended family & friends, and even my d….
In that moment, Dr. Chen helped me see why none of that really mattered and that letting go of blame and shame were going to be key to implementing FBT. I saw that if I started rewinding the tapes every time we hit a snag...I'd be emotionally exhausted and throwing in the towel pretty quickly.
- Lydia from the thread Light-bulb-moments!