I’d like to share a comment I got on my last blog post about exceptionalism. It was well thought out and explained. Through it I realized that perhaps I ought to make some clarifications as well as offer additional thoughts. Thank you to opaque19 for the courage to offer an alternate opinion. You’ve inadvertently given me a platform to discuss something I find gravely lacking in iOP and eating disorder programs. To note: I’ve removed sections of the comment that were personal reflections of things not inconsistent with the commenters own experience. The comment in full can be read on my previous post.
Hi, I have been so happy to find your blog and I just wanted to comment on something that struck me in particular since finding it which was this comment: “I stopped using specific words like “restriction” and now say “behavior” where possible.” The “behaviors” part doesn’t bother me so much here in a personal blog setting, but I feel like I have to give it equal time compared to how I lauded the shunning of the dx. Because my first experiences with treatment (support groups, IOP) were very vehement about “we say USED BEHAVIORS!” to the point in one group where a member couldn’t even say he and friends met at Dunkin’ Donuts because POTENTIAL TRIGGER, OHEMGEE! and had to say “that coffee place with the name I can’t say” For me it is more helpful to name behaviors and maybe it’s partly because for me they’re so varied. Saying ‘I binged’ means a billion different things than saying ‘I fasted/restricted’ or ‘I exercised until I dropped’ or ‘I slept for 16 hours to avoid dealing with things I didn’t want to admit I’d done.’ Saying “I did behaviors” tells me nothing about if I can truly relate to a person or not. I can SYMPATHIZE, but it’s really something else to both sympathize and empathize.
I’m still in iOP and am the only one using the specific word ‘behavior’ mainly because that was what was used at the ED program I was in. The Renfrew girls say symptoms. Others say various other things. I don’t know when it started but everyone is so paranoid of triggering everyone else even though, as a group, we talked about iOP being a great place to admit being triggered and then dealing with it. However, specific symptoms or behaviors are still not allowed. Personally I think this rule is utterly irresponsible. My reason is that it’s in iOP that we can process being triggered with specifics. If we don’t learn there, how will we cope when the discussion comes up outside a therapeutic environment as it has over the holidays for many people. We aren’t even allowed to say any kind of numbers because there is one person who is triggered. I mean one girl talked about her 22 lb cat and then apologized! What!?!? It’s been a journey for me because the girl who is triggered has no problem spouting numbers herself. Opaque19, your last two sentences would have cleared up what turned into a big mess of assumptions and accusations. I have bladder issues and sometimes have to go to the bathroom more often then the breaks. I was accused, not by staff, of purging and “because staff let me use the bathroom” I was given permission to do it. Sigh…..perhaps if my specific behaviors of restricting and exercise were known, that wouldn’t have happened. Because you’ve mentioned this very thing I suspect it is an iOP/program issue across the board. How unfortunate. I mention programs because we never talked about EDs specifically or, get this, body image.
I’m certainly not trying to undermine your reasoning for moving toward just saying ‘behaviors.’ In fact I have a lot of respect for it since it sounds like long-time readers will KNOW and you’re just making the point that it doesn’t always have to be in-your-face “I’M RESTRICTING!” Similar to the shunning of placing the dx in the forefront. I guess the point I was making more was “I get why you’re doing this but please understand why I will not!” For me I feel like it does no good to say ‘I do behaviors’ without explaining it further. But also I recognize it does no good to say ‘My dx is blahblahblah’ as if one ED is more or less detrimental to a person’s life.
When I talked about the change of terms it was by no means a judgement or expectation that anyone else would do it. Rather, changing it was a way for me to move away from having it as a part of my identity as well as making my specific behaviors, i.e., restriction, exercise, sometimes purging less personal in the sense of creating space between me and the eating disorder. I’ve struggled with an eating disorder for 33 years so it had become my identity and working to move away from that has been an almost impossible challenge. What I’m doing is no doubt unconventional but it helps.
As for other bloggers, this has always been my thought: This platform is sometimes the only place people can freely talk about what they are going through: symptoms, behaviors, frustrations, insanity in the head, even suicidal ideation. I am familiar with all those and even more related to bipolar, chronic pain and so forth. I am, in fact, a supporter of people who fully express themselves because it’s better to get it out than hold it all inside. Many times I’ve commented that very thing. It’s heartbreaking when people apologize for writing about suicidal thoughts, cutting or being in recovery yet desperately wanting to be sick. Recovery is hard, possibly the hardest thing many of us will go through. When I was at my most desperate, I found writing it out the best way to get through it, get it out of my head, find support. I should probably mention that it’s only been recently that I’ve been able to get treatment due to insurance and am, even a year later, still fighting for them to pay up. Many people don’t even have that so this may be their only source of support. It was for me for a long time.
Many times when I write a post I write without thinking beyond the topic I’m writing about. It’s literally a window into my mind. However, this is a public blog so perhaps it would be more responsible to clarify unclear points or ones that may seem to cast out judgement. I cannot express the amount of empathy I have for everyone of us here, struggling just to get by as well as the joy I feel for even tiny achievements. I didn’t have this option when I was younger since there was, well, no internet so I’m beyond grateful that people can come here and find an understanding ear. The last thing I want to do is bring harm to anyone.
Writing this response has been a huge challenge for me. Well, not the writing part but the posting part. My inclination is to apologize then delete the post but yeah, that’s ridiculous. I need to grow up. I love these sorts of discussions but I also feel very vulnerable in posting this. The thoughts in the back of my head tell me that everyone will respond with “see, you are a horrible person” which is obviously very not-adult like. So here it is. I just saw that this commenter further wrote on this topic and I look forward to reading that post.
I’m transitioning into a new phase of my life in recovery and beyond. I’m working on another post on that specifically. I didn’t realize how much time “life” took up and it’s taken away my blogging time. Every time I post I promise to come back regularly but I think a wiser thing to say is that I love it here and will post when I can.