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.
7 comments
j says:
Aug 13, 2011
I’ve never thought of it like that (re: the ‘well’ people leaving group support/therapy and taking with them their insight) I’ve always looked at it from the point of view of leaving and doing the leaving and just how scary or threatening that can be- it tended to be the case that (for me) I’m shoved to go rather then wanted to leave of my own accord- but part of that is more to do with finding you can never know enough, all the experience in the world, all the facts you know yet you can still always find the room to learn more.
Maybe more needs to be done to maintain the ‘recovered’ status of those who do leave because even though it was years and years ago, the one thing that remains strongly in my mind regarding my hospital treatment was the near enough rule that once you’d been admitted, your next few relapses were written on the cards. I managed to find my way to stay out was to remain in treatment as an outpatiend and privatly (so its open-ended as much as possible) but many do not have this experience and that is very unfortunate as even with all this support I still find it very very difficult at times to stay away from a relapse!
I think it would be excellent if treatments were possible on a long-term bases even life time basis, it wouldn’t need to be compulsary but more emphasis on recovery being a life-long thing (like education, like running a family, like a career) you don’t just do it for a fleeting few months or years, its for life. Maybe the option to do that would not for everyone but I’d say in my experience of others, for most.
greythinking says:
Aug 13, 2011
j –
I agree that discharge can be terrifying if you’re not ready, and I’ve definitely had that experience before! It is, unfortunately, all too common.
Your point about having that long-term OP treatment option is interesting. I’ve thought about that before… that there is AA for recovering addicts/alcoholics, but really nothing even similar for eating disorders, depression, etc. There are probably a few things to consider, though:
Like I said, this is definitely something I’ve thought a lot about before (and maybe should do a post on…?), so I’m just throwing these points out there.
With that said, I think you could probably do outpatient therapy forever if you wanted. Lots of people even without significant mental illness have therapists.
Emily says:
Aug 14, 2011
What an interesting post. As a researcher I would say that I think there needs to be some research on this topic. I would agree that the internet has impacted our culture in so many ways, but I also believe that the internet essentially is “democratizing access” to research. By gaining access to research as well as other patients people who have firsthand experience and interest in the latest research are able to add a different voice to conversation.
I know the ED community is not the only area in which this is occurring (autism awareness and the breast cancer communities – immediately come to mind), but I think both you and Laura accurately point out how important this discussion is and I can’t help but wonder how much this will help speed up awareness and the development of new treatment modalities.
There has been a significant concern about the potential for the internet to foster destructive communities among people who are deep into their disorder, but I prefer to focus on the power of the internet to advance awareness, community, and advocacy among interested stakeholders. Thanks Grey and Laura for pointing out how the internet and access to a wider voice is helping move the discussion in a more useful and purposeful direction.
Sheena Mason says:
Aug 19, 2011
I don’t know where you’re based, or even how old you are. I am about to be fifty and became bulimic at 11 years of age. Back then nobody knew what was wrong with me. Eventually when I was 28 I admitted myself to a twelve step program in London and by then had added drinking to my list of addictions.
We had this thing called after care which if I remember rightly was available to us for a year which meant we could go to a group on a Monday night in the clinic and continue on our journey – back then we knew all the inpatients and kept in touch with them. We really did support one another.
What is interesting for me is I left the clinic in a pretty good state but I have on many occasions fallen back into my old self destructive patterns of behavior. Three years ago i started to write a blog as a form of self-therapy. I’m just about getting to the stage when I would say I am in a state of wellness, rather than being just well.
I love what you’re doing on GT, well done and good luck with it. It would be great to keep in touch. Sheena
PTC says:
Aug 24, 2011
Do you think the professionals think ED blogging is beneficial or had a negative impact on those suffering? I think it’s beneficial for me to get online and rant and rave about my crap, but then I sometimes tend to search for those who are also struggling. I don’t know. I guess it’s a fine line and an individual thing. I don’t really get triggered by anyone, or reading anyone’s blogs. I’m probably making no sense.
Laura Collins says:
Aug 30, 2011
Can you tell I’m a bit behind on my reading? I’m so honored that my post led to your excellent question – and thoughts. You’re right: how do we know whether the community is changing the voice or there are just more voices being heard – or if they all feed into one another? We don’t. I guess we just get to enjoy it, participate in it, and continue to speculate!
All I know for sure is that I really enjoy being part of the “web” of conversations. I learn from it every day, and glad to be part of it with you, GT!
Sara Grambusch says:
Oct 3, 2011
This is a great topic. I think the voice really is changing due to the support system of the internet and finding out what others are actually experiencing. I agree with your statement that DSM criteria encourages us to maintain and reveal in our sickness as identity, but it’s interaction with others that show me the multifaceted experiences of EDs. The DSM is currently undergoing a massive revision which has some more realistic criteria for EDs. I actually just blogged about it today. I hope this voice continues to grow and helps others shed their ED identity faster during recovery.