While my girl was inpatient, staff gently supported her in rotating her pants and adding variety. She left IP being able to wear more than she can now.

Her body dysmorphia did ease with w/r. There were a couple of mothns where she was rotating sweatpants and going without sweaters but I didn't catch it early when it began to slip again and before we knew it we were back to one pair of safe pants.

I always say It is like getting an octopus in a box, this ED thing....as you get one tentacle in and another pops out.

-anotherbite from the thread "Is it possible to avoid the Magic Wardrobe?"

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...

Anosognosia is a tough concept to get our heads around, especially when our children are lucid and often doing well in other areas of their lives.  My d was able to maintain excellent grades even while she was very ill, and tended to use that as 'proof' that she was fine!  She felt fine too, she really did--all the way to the hospital.    

Anorexia is a bit like falling asleep in the snow.  The sufferer is blissfully unaware that anything is going wrong and can't understand why the people around her are upset.  Think of yourself as that rational person inside the warm house.  You know you have to go bring your d to safety, even if she believes that she is comfortable and fine right where she is.  It's not denial, and it's not necessary for her to admit that she has a problem in order for her to get better. - Colleen

Read more about Anosognosia

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. C 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!

My d didn't attend school (Year 11) last term, but had the option to work from home. She has always been a big reader and good at schoolwork, but could not do anything last term. She told me recently that ED interferes with everything and she couldn't concentrate on anything because of this.  

She said that if she was doing maths, she would look at the numbers and then start doing calculations of calories, bmi, kgs, etc. If she was reading a book, she would start imagining how certain characters would be if they had an ED. She said it takes over everything, and she can't focus on the actual task because of the ED voice in her head.

 

- lostintransit from the "concentration" thread.