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?
It makes me angry that there seem to be many professionals out there who don't have Dr. Kaye's humility, and instead insist that their theory and their treatment are quite clearly correct. The other thing I get angry about is how little research funding/opportunity there is in eating disorders compared to some more obviously physical illnesses. At least we have some talented and open minded scientists on the case!ReplyDelete
It frustrates me that I can't make people understand - that I can't send out an explanatory booklet or throw reams of evidence in the face of those involved in the care of deathly unwell friends. I have to restrain myself from trying to rescue people often, and I wish neither the effort nor the desire were necessary.
On the other hand, this is the process understanding of all things goes through. We learnt at the symposium of what it was like when the understanding of autism was at a similar point. Getting angry is helpful if it can be channelled into useful energy to try and speed the process of change along, but not if it turns into bitterness and despair (both of which I sometimes sink into on days when it seems like half of my friends are dying from treatable illnesses). I hope that the field is slowly moving towards early intervention, utilising community support like family and friends and involving them in comprehensive treatment for sufferers - not just feed 'em up, chuck 'em out and act surprised when they start drowning. I hope so. I'm certainly going to do all I can to keep learning and campaigning.
So...Dr Kaye's talk didn't really have a negative effect on me. I accept that we don't know an awful lot and I'm grateful that they have at least gone a long way towards proving some things incorrect. I find learning about new discoveries exciting on an intellectual level and frustrating on a personal one when my friends are suffering and research seems to take so long to be used in treatment. But all in all I'm just realistic. This is how things are. They will change.
We don't know a lot about the "Why" of EDs.ReplyDelete
We don't have all the answers to how various diagnoses are similar, and how they are different.
We don't understand fully the process of how the biologic conditions of the brain and body wind up being expressed as the behaviors and symptoms we can see on the outside.
But we ALSO don't understand these things about LOTS of other serious and chronic conditions: Hypertension, coronary artery disease, cancers, arthritis, autoimmune disorders. We don't conclude that since we don't fully understand these problems, we shouldn't try to make the symptoms better. Everyone understands that even if we can't CURE it, we can make living with it BETTER for LONGER, and that this is a worth-while goal.
And we CAN do so much more for people with ED than can be done for so many other diseases.
We CAN treat the symptoms so that they do not KILL.
We CAN acheive full remission / recovery (which ever works best for you).
We CAN offer a variety of treatments, so that if Plan A is not as successful, there are options for Plan B, Plan C, and so forth.
We CAN keep working at it.
What I find frustrating is not having a big enough evidence base to convince the NHS to give proper FBT a try. There are a very few who do do FBT by the book but in most places it is mingled in with a bit of this and a bit of that.ReplyDelete
I am not advocating FBT as the ONLY treatment but as a first line defence, it is the one treatment with the most evidence base.
I couldn't really hear St Walt that well. However, I wish I could put him in my pocket and produce him every time I was faced with a brick wall of tick box civil servants who are unable (or unwilling) to hear what I am saying.
Mixed emotions from me. Empowered yes, enlightened - not really, angry - always. Frustrated - definitely.
Once I realized how little evidence-based information professionals have, it empowered my wife and me to take charge. We felt we had no other choice. The outcome for out daughter was good.ReplyDelete
Part of the problem with the state of eating disorders research, in my opinion, is that eating disorder researchers have been pursuing lines of study that reflect their own biases, including a bias against parents and families. This has caused them to waste a lot of money or research that has led nowhere, including many expensive studies that have looked, without success, for evidence that parents and families play a signifcant role in causing eating disorders. I would like the professional research community to give the parent community a report describing what has been accomplished during the past decade in eating disorder research, and an accounting of how much money has been spent. (I believe in the U.S. the NIMH has granted approximately $100 million in the past decase alone to eating disorder research.) What tangible data has been developed? How has the data helped in prevention and treatment? In addition to accounting for the past, perhaps the research community could explain to parents the research agenda for the future. After all, we parents, through our taxes, are funding this research, and it is the health and well-being of our families that is at stake. F.E.A.S.T. might write a letter to the EDRS and the NIMH asking for a report of this kind. More accountability would be a good development, in my opinion.
I would say "determined."ReplyDelete
Like Charlotte I found Walter Kaye's talk particularly frustrating because, unlike most of the others, I couldn't hear it over the excellent livestream. As to the general idea of whether the little true data and the less than conclusive science is depressing or empowering I would, on balance, say that it is empowering in the sense that Katie described of prompting anger and action. Anonymous has a point that bad research is wasted research, but the sums speak for themselves - compared to illnesses that are seen as physical or organic or deserving of care because they aren't "chosen" by the sufferers (and NO, I DON'T think that of EDs but far, far too many do) the sums given to research on EDs are minute. Compare the $100 in a decade cited by Anonymous to these sums in a year for cancer http://www.cancer.gov/cancertopics/factsheet/NCI/research-fundingReplyDelete