Posted by ElaineM on October 29, 2006, at 20:07:19
In reply to Struggling about being misunderstood, posted by Racer on October 28, 2006, at 17:23:42
>>>>Even my former pdoc, Dr CattleProd, told my current T (a specialist in eating disorders, CEDS, and she lectures on the subject all over the country) that she didn't need to worry about my eating disorder because my weight was just fine!
I really hate that. If severe emaciation is required before intense monitoring or intervention seems to be called for then that’s like endorsing the belief that a person is only as visable their worst symptom – and that for anorexia specifically, weight is the only factor that merits attention. How are sufferers supposed to combat the belief that starving is counter-productive if it is the thing *required* to be taken seriously by treating professionals?! I guess it’s a touchy thing cause obviously diagnostic criteria does state an amount of weight-loss required, but I do think it’s important for professionals to realize that a danger zone doesn’t only exist from that one point and downwards – that it spans higher as well. I don’t often fault peers for not realizing that you can suffer side-effects from starving while being at a normal weight or higher. And I try to not get upset when they don’t really “get” any of it – I mean, if *I* can’t even understand all of it, how in the world can I expect them to. I often *wish* for it though. And I often forget everything I’ve been saying here and just react based on raw emotions – most often franic depression.
But I do get mad at professionals for not learning beyond the central basics. I mean, I can read a chapter on ED’s but does that qualify me to make treatment judgements, NO. I realize that even regular docs would do more than that, but it’s just very confusing when a doctor can be so skilled in treating some forms of mental illness but not others. I suppose it’s quite unfair of me to expect one person to know everything, and I don’t, unless they make claims of also being experts in the ED field, or do not claim that outright but continue to make unqualified treatment judgements regardless. Ooo, I could go on forever about this.Do you know what your T’s reaction to such a statement was? Not just to you, but what was her response back to Dr.CP?
>>>>>>People in my family seem to think that I must be "all better" because I'm not so thin. Even my husband doesn't have a clue about what's going on inside me.
It must be so frustrating – you sound separated from. For me, I think it makes any version or amount of closeness/understanding seem like a pseudo-closeness – cause if they can’t understand the part of me that hurts the most, impairs my life the most, the part I’m most proud as well as most ashamed of, then the other stuff doesn’t ever count for much at all. It makes it too easy for me to discount ANY show of understanding about ANYTHING that’s going on with me. I think that’s why I don’t like when people try so hard to say the right thing to me (not that there’s really anyone around to say anything right now). I’ve almost wanted to say, Can you please not say anything at all instead? (cause all it does is offer me repeating proof that, even when someone *wants* to help, even if they want to try to “get” it, they can’t. *sadness*) But then, when people don’t try I despair over that too. It seems to be an intense desire to not be alone within myself – but I also know that AN is often explained as both a desire and fear of dependency.
>>>>>>Last night, I was invited out to dinner with some friends/acquaintances. I called my husband, to see if he wanted to meet me there, but he said no -- he wouldn't, but I should go. So, I came home. He thought it was because I thought I wasn't allowed to go, but really it was because the reality had hit me: if I went, I'd have to pick a food from the menu, in a restaurant I'd never been to, and then eat it. In front of people, no less. And I knew, if I picked something I felt safe eating, someone there would comment -- and probably pressure me to eat more than I felt safe eating.This part is not so much a problem for me now (but not very much before either). Perhaps only during the original dropping down. But after that, I’ve never felt ashamed of appearing out of the ordinary when eating with or infront of others. I never hid any behaviours (maybe modified them slightly, but never avoided doing versions of them). I never even hid my body. I flaunted my bones like they were the best of me, while feeling that they were also the worst too. I did it knowing that it looked disgusting to everyone, knowing I would visually be indentified, unquestionably, as severely mentally ill. I almost think there was a masochistic side to it. I used to display the part of me that I considered the thinnest (hiding the parts that I thought were still fat or “fat” – I’m never 100% sure) knowing that it would prompt negative reactions. I used to like the sideways glances, the looks of disgust (I did not ever think the looks meant envy or anything like that, which some AN use to deflect confrontation or objection). Once I was walking past a group of grown women, and as soon as they were behind me I heard one of they say “Eww did you SEE how skinny and gross she looked?!” And I felt good about it. I felt more confident after hearing that than I did a second before. I could explain the etiology of AN for me and what it started out as, and what it changed into, but it would take up too much of your thread. But I kinda think a part of the anorexia for me was that I liked the idea of controlling what people would automatically think was the worst thing about me. I liked picking the reason for others to hate me. Almost like a “please hate me for this, instead of noticing this and this and this and….”
But, from the times I was attempting to blend in, I noticed that some people try to build a bridge in social situations by quickly searching through their own head for experiences that they think can relate to me, that seem “similar” to what I’m going through. Usually that amounts to talking about there own view of how dieting is bad or hard, how women shouldn’t have to, how they beat the feeling of a needing to lose 5-10lbs. Or if I’ve used the excuse of not feeling well (though alot of the time, when eating different or too much food, it’s not even an excuse, it’s real) they talk about stomach things they’ve gone through, or talk about when they had food poisoning…etc. I can know that they’re trying, that they only want to create a reassuring commonality, but despite recognizing that gesture, it only ends up making me feel more different, more far away from normal. I always end up thinking, “God help me, *that’s* what their biggest food problems are?! I’m gonna die from this.” It’s hard, I mean, bless them for trying but…..*sigh* Such a catch-22. But then of course there’s also completely ignorant people, ones who try and say smart-@ss things about stuff they that’s unfamiliar to them. I used to waitress alot and got my fair share of remarks. But I also learned that if you bounce around enough, crinkle your eyes and never stop smiling, people will accept whatever excuses you give them for being too thin, not eating, looking pale…. I think I really learned how to debate and defend as though my life depended on it – cause the life I had spiraled into kinda did.
>>>>>>I also find myself feeling completely at a loss in other ways. I don't really understand what it is that makes me anorexic. I know what it does for me, that makes it so seductive, but I don't understand how that happens.
I’d like to hear more about that part because I’m not quite sure I understand. For me the thing that the disorder does for me *is* the thing(s) that makes me anorexic. I don’t know if I’d ask you to write all the good stuff about having your ED here, cause I worry it could be mistaken as proof that it’s alright, but I assume you’ve done that exercise before, right? We had an entire group in treatment devoted to talking about the positive aspects of having the ED. (I don’t know if that would sound weird to someone reading who’s never had one, but the point is to recognize what deficits the ED fills, as a first step in working towards substituting healthy ways to fill those holes. It’s supposed to help you recognize what the actual “enemy” is, and not fat) I’d be interested in what makes it so seductive for you personally.
I’ve read a bit about the obsessive-compulsive disorders – alot of stuff fits in along the spectrum somewhere. I like the explanation that AN is a manifestation of OCD, but with added biochemical side effects that develop and worsen as the symptomatic defenses intensify. I realize its one of many paradigms but I like how it explains it to me. I’ve read that unlike non-ED obsessive compulsive behaviors, anorexia actually rewards its victims superstitious behaviors with tangible results – results that are usually only *felt* within for other types of rituals, and not *seen*.[SL]
This is an explanation that I like, “Anorexia is a form of OCD where malnutrition creates an organic mind syndrome that enhances obsessionality and offers its victims the secondary gain of assertiveness and aggression as she defeats those in her environment who mobilize in opposition to her disordered behaviour.” A little more to one part, a little less to the rest, but all in all I relate to what he says.>>>>>I do know that I can't get it just by not eating, though. Something has to switch in my brain for the good stuff to start. (I guess the "good stuff" is really starvation-related, so that's a bad name for it...) Whatever it is, though, I can't make it happen. It just does. Something changes, and I go back into it. It's distressing, because it's as though I'm taken over by something alien. Even while it's going on, I can watch, and say, "That's just not right..." But I still can't stop it, once it starts.
What is it about the starvation process? Is it the process for you, or the side-effects, the opioid effect…? (Jeez, it don’t know if it’s best to answer) Do you know *when* you tend to go back into it? The first time I really don’t know for sure what “caused” everything to converge. But for me, the original bout was very very different than the relapses. I can explain the relapses pretty “easily”, but it’s the first onset that I’m confused about. I’m mean, I’ve read theories that make perfectly good sense, not just theorectically ;-) but personally – seem to explain me quite well – but I never get that “yep I totally completely understand now” feeling.
Levenkron places a lot of significance on deficits of trust, dependency, and positive parental identity messages, which he says results in developmental emptiness. He says that, “The style of her struggle with others (disfigured appearance, ascetic willpower in depriving herself of nutrition, special thinness, eating rituals) will all coalesce to form a pseudo-functional identity that will alleviate her terrifying sense of emptiness.” [These are from notes I made for myself a few years ago while reading to understand myself better, so I don’t have all the page locations immediately. I’ll search them out and acknowledge them asap.] That being said, this all may meaning nothing to anyone else in the world but me, but I’m just sharing what I’ve come to believe.
>>>>>>>I've caught myself thinking, though, at times over the years, "Can't any of you *see* how badly I'm doing?" That does make me think that there's at least some part of this that is related to creating a visual representation to communicate my distress. Of course, that's why one motto common to ED treatment is "Use Your VOICE!" Use your voice to communicate that distress, not your body.
I think I use starving to deaden everything – to smother the anxiety I have at living the life I was…am…was -- to actually feel like death. Do you find it hard to use your voice to communicate distress? What is it about distressful feelings that make them need to be silenced and instead replaced with actions? (I’m asking that part cause that’s what I’m confused with myself.)
>>>>>>Anyway, one thing that brought this up was starting Zoloft. My experience on SSRIs is that I gain a huge amount of weight. I'm very frightened of that, and I'm also afraid that people will think that's only my ED making me afraid. It's not. Or, if it is, it's still a real fear, and it's not distortion that I've gained that weight. I didn't tell the new pdoc about my ED the first time I saw him, and I don't know why. I think, though, that part of it might have been my fear that he'd look at me, at my current weight, and think, "she's too fat to be anorexic, so she's either bulimic or delusional." (I don't think he did. He asked for three numbers: my lowest weight, my current weight, and what my goal weight had been. I was concerned, because I answered him honestly, that he wouldn't continue to prescribe Ritalin to me, but he did.)
Yes, this is something else I’m all too familiar with. But first, is it really a huge amount of weight, or a huge amount of weight for you? (not to say that it makes it any less disturbing) To me, I’d consider the amounts I lost, and the amounts I put on re-feeding, to be actually huge. But the part I could never make first pdoc understand was that for me, 5lbs seemed equally as devastating as XXlbs. Couldn’t understand that it was the act of gaining (not necessarily how much) that was hard to endure. Though, I’m not gonna lie, numbers did end up becoming extraordinarily important to me.
But I think it’s another tough dilemma. [It goes without saying that it’s mandatory to work on the emaciation first. Meds will just not work optimally or at all in someone quite malnourished and underweight. Weight must always be restored to a certain level first.] When weight-restored once, a doc asked me if I would trade maintaining at a slightly higher weight, for the possibility of giving a med the chance to take away a lot of my anxiety and depression. But that’s a tough question. I’ve never been keen on taking leaps of faith, of believing in “maybes” – is that just another reflection of an anorexics inability to trust in caregivers?….I don’t know. I have ALOT of issues with medication – perhaps even a mild phobia, but for ALL meds, like even vitamins and antibiotics. So it may be a slightly different additional aspect I’d bring to the med debate. If, for you, it’s not just only about the possibility of weight-gain, what else is it that you are worried about regarding the SSRIs?
About hiding your ED, I’ve thought of the same with my neurologist, of all people, and new PCP’s I’ve been calling (and recently, concerning something else I haven’t yet posted about). Cause when I told the Neur. about the anorexia, which I’ve been specifically out of intense treatment for for awhile, he asked “what medication are you on?” I said none. He asked if he could put me on one (before even addressing what I was sent to him for). I said no, and explained that, honestly, I didn’t want to gain weight, was aware that it was a known side-effect of what he suggested (not Zoloft), and didn’t think it had anything to do with the problem I was sent to him for – at least not without him examining and testing me first. At least he may have been slightly more believable then. He smirked though. And then I got that known sinking feeling, the one where you just know that someone else is not gonna look behind or beyond your psychiatric history. I just didn’t want to have to prove myself and my perceptions everytime I opened my mouth. If I’m always gonna be seen as that diagnosis, forever, then what was the point in recovering at all?! I don’t want to have to fight for my credibility – for the same benefit of the doubt that most others are given right off the bat. I realize that I was the one who starved it away in the first place, but when am I considered redeemed?! If I worked hard enough to gain the weight back, then give me a little credit in terms of how realistically I can perceive things now. It sounds like you may have felt something similar. But I remember that early on, during the first time, a pdoc said I didn’t have anorexia because I still ate peanut butter! It’s so important to work with specialists who know what they’re doing. I was so very lucky to be treated in the places I was.>>>>>>After that, I got to sit in a room with people discussing mental illnesses, including bulimia. Now, I know bulimics. The group therapy for EDs that I go to twice a month is virtually ALL bulimics. (I'm once again the only restricting AN there...) So, I hear things that I can understand, even if I can't totally relate to them. Listening to that conversation, I felt so alone. I finally got up some courage and said, "I have a friend who's bulimic, and she told me..." But even that was misunderstood. (Dr CattleProd was kinda pompous when he said something like, "well, anorexia is only about control." Even trained mental health professionals don't necessarily know much.)
Was it the members who were offended, or the facilitator who discounted you? I could say more, but I don’t know it would be relevant, cause I’m not sure where the misunderstanding occurred. But man, I don’t the sound of this Dr.CP. Only control? A big “Not quite!” Mr.Not-Knowing-Enough. Is this your current pdoc, or and old one?
>>>>>>>>>And there have been recent posts here that I have also felt upset after reading. I have been feeling as though what I'm experiencing is not considered real, somehow. That's a bad way to explain it, but the feeling is complex. I have been feeling kinda invalidated, I guess is the overall theme. I want to communicate my pain, but it feels as though no one out there really understands it, as though everyone I try to communicate it to is so sure they understand that no one really listens to me. That's it: I've been feeling unheard again. And you know what? Part of the anorexia is in response to not feeling heard.
If I describe my own version of your “not considered real” experience, I say that I fear that others may view anorexia as only a more extreme end of a “normal” behavior. I experience so much frustration and sadness when I think others are seeing EDs as only strict dieting. I think the "feeling invalidated" theme makes alot of sense considering what you’ve been writing here.
Obviously my favorite author on several psychiatric conditions is Steven Levenkron. The book I’m quoting from is "Obsessive Compulsive Disorders: Treating and Understanding Crippling Habits" He describes OCD suffers as, “Individuals who have descended into a ritualistic world because they’ve given up on others emotionally.” It sounds a little harsh without the rest of the long explanations (like what “giving up on” means) but I personally really get alot from his explanations. He included a whole chapter on ED in his book on OCD. The part that touched me the most was when he was describing the OCD patient saying:
“[it] very likely has been a long time since anyone’s voice calmed them down, since anyone’s advice relieved them, since anyone’s guidance made them hopeful….In discarding others they say, `No one else can understand. No one else can help me. No one else realizes how important all these ideas are to me. I have to do everything for myself. I’m the only one who can do them correctly. I’m the only one who can do things in a way that satisfies me….but the catch is that OCD sufferers *never* satisfy themselves.” [Pg 179]I realize that this is only one guys body of work but it’s one that had meant alot to me, so I included it. [I don’t know if I’ve gone into it before but I have BDD (not related to shape or weight), and the OCD diagnosis that that’s suggested has … influenced professionals opinions concerning my ED treatment. I had BDD for around 8 years (so they tell me) before anorexia or food issues appeared.]
Anyways, feel free to disagree with anything I’ve said. I haven’t claimed to be an expert ;-) All this is only my opinions collected from my own experiences, my own thoughts, and select authors I’ve chosen to read (which is way more than just SL, but I'm kinda into him again right now). It’s definitely biased if not preachy, and if patronizing, I'm sorry. I know I’ve relied heavily on a single author, but hey, I never claimed to be a social scientist or researcher :) [Infact I’ll push the other books of his I have as well: "Anatomy of Anorexia"(a good beginners introduction) and "Cutting: Understanding and Overcoming Self-Mutilation". I know some criticize his books as self-aggrandizing and his tone pompous. But I think if he’s accomplished half of what he writes about then I actually find him too modest.] Just trying to figure myself out a bit. And I’m trying very hard to dance around language and a very sensitive subject here, but I’m sorry if anyone gets offended. Thanks for posting what you did Racer.
blove EL
poster:ElaineM
thread:698537
URL: http://www.dr-bob.org/babble/eating/20060628/msgs/698864.html