Laura from “Eating With Your Anorexic” posted something the other day, that I just HAD to comment on:
Something new is happening in eating disorders. The voice of eating disorder patients is less stereotyped, more empowered, and less victimized. Why? I attribute the changes to two separate but interacting elements: the cross-pollination of the Internet, and the shifting narratives of the treatment community.
Before the Internet, our exposure to literature about eating disorders was limited to the few books that happened to be on the bookstore shelves that year and the occasional magazine article. Now we can search for information in a deluge of competing sources and even talk back to them: commenting and quoting and blogging and even interacting with the writers. Treatment providers are also being exposed to and seeking out a new variety of both professional and anecdotal sources.
I think that Laura is on to something here, but I wonder — has the voice of ED patients changed, or is there now a forum (that didn’t previously exist) for more empowered discussion?
When I started GreyThinking, I felt there was a big gap between professionals, patients, research, and personal experiences. My personal blog had gone from “here’s what’s going on in my life” to “I think the narrow definition of anorexia in the DSM encourages people with EDs to maintain a certain level of sickness.” Not only did I feel that I had a unique perspective, but I was also frustrated with the lack of commentary surrounding mental illness. Where were the other research-addicts that wanted to rant about journal articles that were true/untrue to their own experience?
It’s amazing how much has changed in the last few years. Now I can pose a question on twitter, and have a myriad of people answer me: professionals, sufferers, family members, friends, etc. As both a blogger and a patient, I think that the interconnection is awesome.
I hadn’t thought too much about the change in treatment landscape for professionals, though (well, minus my own paranoia that my therapist would stumble upon GT…). I wonder if this interconnectedness helps them understand better or provides them more insight that they can use to treat their own patients. Personally, the exposure to different blogs and treatment modalities has hugely impacted my perspective of the illness and the usefulness of treatment (if you read back a couple of years ago, you’ll notice that I am MUCH more bitter… although also much funnier, which makes those posts more amusing to read…).
Something I’ve always found to be frustrating with any kind of group treatment, is that the people who are doing really well discharge. I know, that’s the goal, right? To get better and not be in treatment? However, there’s something unfortunate about removing inspiring and motivating people from the group setting. I think that you need more exposure to people who are doing well and who have insight into the whole struggle. I’m sure that Laura could speak to that same need for families and other loved ones (connection with those who have been there and made it through).
I’m not sure if the voice of ED patients in general is changing, but I know that there is a lot more access to those who are doing well.