Is the science depressing?
I've been thinking a lot about what you shared about how depressing you found Walt's talk. It helped me a lot to hear that response, and helps me understand how these messages – the same messages – can be encouraging or demoralizing depending on where you stand.
The message that "we know so little" was encouraging to me, and empowering to many of us, and I want to try to explain that.
It is important for parents to know:
- There is a lot to learn, and even the professionals are learning.
- Do your homework, as the solutions you are being given may not be based on solid evidence.
- Add your own parental instincts into the mix, too, as you have important things to contribute.
- Keep doing your homework because there is no magic pill: your family needs to engage and remain engaged to find the best path now and then in the continuing stages.
- Understand that this is a new field and that you will need to take responsibility for the decisions you make – you can not simply turn the thinking over to others.
- Collaborate WITH the treatment providers and do not expect them to provide all the answers.
- In your zeal to get help, don't grow so overconfident that you harden into a stance you can't change: the experts are still struggling to understand Eds and so will you.
- Have sympathy for those who are trying to research and understand this illness – they are up against a lot.
- Yes, you were right, you may indeed have been given poor advice and care, but don't get mad, get busy.
- GET INVOLVED with advocacy so we CAN get the data and the public awareness up to speed, as has been done by other movements in the past: so other families later on need not suffer as much.
I don't know that I was ever as frightened and angry as when I realized that the 5-6 eating disorder experts that we consulted when our daughter was first ill – all of them quite confident and "hopeful" about their approach – really didn't know very much about anorexia. It would have helped if there was anyone out there to help me understand WHY these people were so confident and yet, with all due respect, wrong. It would have helped me have the confidence to keep searching for appropriate care – because at the time I was sure I must be wrong, because how could anyone keep treating her if they weren't operating under well-understood and well-grounded understanding of the illness? I benefited from knowing that it was MY job to figure that out, and that my instincts telling me something was wrong with those providers were indeed those of a reasonable mother, not a bad one.
SO, dear readers, I'm curious. How does the message that science is still very puzzled by eating disorders and that most treatment is based on little data, and that the illness is still VERY difficult to treat strike YOU? Deflated, or empowered? Frightened, or ready to rumble? Angry or enlightened?