Mind The Gap
I have been slow in getting this second post out...my apologies. Truth be told, I needed a bit a of time to recoup after three very, very full days of intense ED talk and theory at ICED and an epic 'cars, trains and automobiles' journey home.
For those who are unfamiliar, ICED is a yearly conference billed as 'a gathering place for professionals and advocates engaged in research, treatment and prevention of eating disorders'. Attendees are predominately professionals but there are definitely caregivers present and I would encourage any parents interested to attend a conference if they are able. We can often feel like we are living in two worlds: the real world and the surreal one at the bottom of the rabbit hole. At ICED those two worlds are one and it is a heady experience to be in an environment (outside of your home) where eating disorders are, unapologetically, the only focus. It was also wonderful to be in the company of a collection of brilliant, compassionate individuals who are truly committed to healing our children. They care.....they care deeply.
There is a lot of work going on in the field and the level of detail and specialization is dizzying. There were over 130 sessions on a wide range of topics. It makes perfect sense given the complex and multifactorial nature of this illness: It demands specialization. I was continually struck however by the fact that parents don't really have that luxury.....the luxury of specializing. Our reality is such that the object of our concern (the complex, multifactorial mess of a kid sitting at the table) demands that we deal simultaneously with all the pieces of the puzzle.
So, when it feels overwhelming.......it is because it is.
(I spent my many hours in Newark airport musing about what I would 'specialize' in....What would you? I quite amused myself thinking of returning home and announcing that I was no longer dealing with 'treatment' issues and that I was, from this point on, narrowing my practice to 'caregiver support').
You can find reflection on the conference from Science of Eds here
and a recap by Shirley Wang on Proud2beme here.
For those who are unfamiliar, ICED is a yearly conference billed as 'a gathering place for professionals and advocates engaged in research, treatment and prevention of eating disorders'. Attendees are predominately professionals but there are definitely caregivers present and I would encourage any parents interested to attend a conference if they are able. We can often feel like we are living in two worlds: the real world and the surreal one at the bottom of the rabbit hole. At ICED those two worlds are one and it is a heady experience to be in an environment (outside of your home) where eating disorders are, unapologetically, the only focus. It was also wonderful to be in the company of a collection of brilliant, compassionate individuals who are truly committed to healing our children. They care.....they care deeply.
There is a lot of work going on in the field and the level of detail and specialization is dizzying. There were over 130 sessions on a wide range of topics. It makes perfect sense given the complex and multifactorial nature of this illness: It demands specialization. I was continually struck however by the fact that parents don't really have that luxury.....the luxury of specializing. Our reality is such that the object of our concern (the complex, multifactorial mess of a kid sitting at the table) demands that we deal simultaneously with all the pieces of the puzzle.
So, when it feels overwhelming.......it is because it is.
(I spent my many hours in Newark airport musing about what I would 'specialize' in....What would you? I quite amused myself thinking of returning home and announcing that I was no longer dealing with 'treatment' issues and that I was, from this point on, narrowing my practice to 'caregiver support').
You can find reflection on the conference from Science of Eds here
and a recap by Shirley Wang on Proud2beme here.
This is a great post. I hope to attend ICED next year. I hear about all the specializations and I wonder if that isn't holding us back a bit--that we're so scattered in what we raise our voices about that little is being heard. I really think we should all unite behind getting public perception about these illnesses to change. Autism has support all over the place; we should be able to get to the same place.
ReplyDeleteLove your post, Lisa. I attended the FEAST conference this year, and it was an extremely rewarding experience. I would love to be part of of ICED in the future. I agree that specializing is a luxury for professionals, and that I would like to see more professional consensus around evidence-based treatment rather than coming up with novel ways to treat a segment of the ED population.
ReplyDeleteI concur with Jennifer that, as parent caregivers, we need to demand the public takes these illnesses more seriously and to do that we need more unity on the professional end.
I love ICED for the high quality of the science and the conversations. It's unique in the field, and I love to see other parents there both for the benefit of caregivers but also so that the field knows we're "in the room," too. The GOOD thing about a multidisciplinary field is that it has to be accessible across disciplines - so we need not be "experts" to get a lot out of it.
ReplyDeleteParents need not feel like outsiders, ever, when it comes to issues that so impact our families!
Thank you so much for going to this conference and providing shall I say *expert* representation on behalf of other caregivers. I trust your qualifications in life implicitly to be an advocate full of impact.
ReplyDeleteOften during the early months I was so exhausted from having to be the *expert* myself, the expert in insurance law, the expert in education and disability law, in pediatric and psychological matters. It was overwhelming.....But what I really needed, and got,.... was the experts to get behind me. And that is when the real care started to happen, xoxo Look forward to future entries!
I quite like that there's a mix of academics, clinicians, some parents and oddballs like me (or maybe it is just me?). The academic/research side of things has to be in communication with the people who are directly affected by EDs, otherwise progress is going to be considerably slower. (Just like clinicians should pay attention to their patients as opposed to reinforcing stuff they've learned in books.)
ReplyDeleteUnlike Laura, I think it is mostly pretty poor quality science, but you know, that's just my opinion ;-).
That said, I also don't think one needs to understand the nitty gritty to contribute. After all, it depends what conversation you want to contribute to. I went (predictably) to the neuroscience paper talks and the neuroendocrinology paper talks. Sometimes the discussions got technical, which is what *I* personally enjoy, but then, you can still learn a lot (I think) without getting into the technical side of what is the best way to analyse neuroimaging data (or whatever). It depends what you are there for and I think there's a lot there that's quite clinical and much more relevant to caregivers AND something caregivers can learn from AND contribute to the dialogue.
I find a lot caregivers and patients are frustrated with the lack of data and studies, which is also why I think these conferences are good because I think (hope) it gives more perspective to (rightfully) frustrated parents about all the roadblocks that exist in doing this research. It is HARD to get funding. Le Grange said their Archives study cost $3.5 million...
I do wish there were more conversations and fewer presentations. The conversations are the best part! I think the best way to learn is through debate and critical discussion. (Always best in real life, too.) Andrea and I both felt like that was, for the most part, missing from the conference. Her and I come from different fields but we are used to way more critical discussions than what we saw there (and what I saw last year, too). If we don't discuss and debate things, how are we going to progress?! Not by nodding our heads and then privately mumbling some stuff to ourselves.
I like the 'conversations' best too. I think there is a lot of learning to be had through the conversations (and disagreements).
DeleteI think caregivers are quite sophisticated about the nitty gritty (out of necessity, quite frankly) and I don't think would be put off by the technical. I quite like the 'deep tracks' feel of the 3 days and think that parents stand to gain tremendously from attending and being a part of the conversations.
What I found alienating (for lack of a better word) was the lack of 'cross-discipline' dialogue. I wanted to hear the neurobiologist tackle prevention...I wanted an epigenticist at the refeeding workshop. I wanted the fields crossed and the lines blurred a little more......
I suppose that is what I most like about the research-practice panel at the end of the meeting.....I like the conversation between fields aspect of it....
Great reflections on the conference on your site Tatyana and Andrea. Thanks for it.
Oh but these people specialize in things and their careers are driven/depend on that specialization. From an academic career perspective, there's no incentive for someone whose research program is on, say, neurobiology, to talk about (or even attend) a prevention workshop. They have to stay on top of their field, after all (and collaborate with their colleagues in that field).
DeleteComing from the neuroscience field, I think there's actually a lot of cross-sub-field talk within EDs (except for some places, but they are, in the grand-scheme of things, minor). I mean try finding an experimental neuroscientist in the same room as a theoretical neuroscientist. OR even having a discussion!! It is as rare as a blue moon. (And sitting in on a conversation between the two parties... oh man.)
So yeah, I agree with you, but I think that it is actually pretty good right now.
I skipped the research-think tank. I didn't really like it last year, so I opted to do some work instead. I'm glad you liked it though.
So true. Parents in the throes have no time for luxury anything or specializing. We have to do it ALL, all the time. Even though my daughter is a young adult, living away from home, I have had years of full-time work to do in giving her proper support. Not to mention the every-minute-but-when-you-are-asleep thinking and worrying. And sometimes you dream about it... And then there were all the years before she moved out. If I could have "specialized", if I had known about it back then, I would have loved to submerge completely into "full nutrition, full weight restoration, solid maintenance" for those years she was with us. It may have saved her a decade+ of misery. We just didn't do enough...
ReplyDelete"We just didn't do enough..."
DeleteKris, I don't think you should be blaming yourself this much. How could you have known? You don't have psychic powers and the situations are so different for different people that it is, often, only retrospectively that you can go back and think you should've done this or that.
Kris- YOU did enough (loving her fiercely and seeking out support)....treatment failed you. Imagine what you would have done with a crackerjack team supporting you all. Much has changed with respect to families and treatment in the last 10-15 years. Where we are now is not where we were then....and what we know now is so very far from what was thought then. You did not KNOW then- which is very different than did not DO.
Delete....and I must say, my family has been on the receiving end of what you have done (offered
insightful, compassionate support/ information/ education) and ...it is 'enough'.