Notes from a patient

I'm 40 years old, and have been struggling with my weight since I was 13 years old. I really don't want to go into what brings it on for me, but I have learned some things based on my own experiences. I'm offering them here both because they might help professionals and because expressing it might help me. Forgive me for the selfish motivation, and I hope it does help.

First of all, I do not meet the DSM-IV criteria for AN. My periods have never stopped. So, I'm a self-reported, self-diagnosed patient and you can dismiss anything I say if you like. (The psychopharmacologist who is currently trying to prescribe anti-depressants to me dismissed my self report of a 'history of eating disorder' because of the lack of amenorhea. Touchy subject for me, especially since I've lost another 25 pounds since then.) I also suffer from major depression (my only official Axis I diagnosis) OK, here goes:

1. Don't assume you know what an eating disorder looks like, physically. I'm like a lot of early-maturing, large-busted women: I learned to round my shoulders and my upper back to try to hide my breasts early on. The weakness and fatigue that go with hunger and depression make it even worse. I probably don't look all that thin to a lot of people, probably just 'healthy lean' -- but I measure 5'9" in my bare feet and weigh 110 pounds. Even my husband -- who is sick at what's happening to me -- didn't realize how little I actually weigh. ASK patients height and weight questions, and don't expect us to be honest in our answers.

2. I know that, as a teen, I knew there was a problem, but didn't want to admit it to anyone, because I was liking being thin. I liked the attention it got me, for one thing, because there are REWARDS for thinness in Western culture. It's danged hard to give that up, even if you're scared by what you're doing to yourself.

3. As an adult, still struggling with an adolescent's disease, there's an awful lot of shame attached to this for me. I know the problem -- "I don't eat enough." I know the solution: "I need to eat more." No problem, right? I know the problem, I know the solution -- but I still can't do it. Imagine the amount of shame that involves. As far as treatment goes, one thing that means is that I'm not particularly honest about it, because I'm so ashamed by it.

So, what does that mean to someone trying to treat someone like me? Don't ask easy questions. My last therapist asked me one time, "Do you eat?" How would any of you answer? "Of course I eat!" She never asked again. Ask more specific questions, and dig a little deeper if you even suspect anything. Personally, I am desperate for help, and would be so relieved if someone would ask the questions that would make me answer honestly. Here are a few suggestions: "What did you eat for breakfast/lunch/dinner yesterday/today?" "Oh, you had an egg and toast for breakfast? Did you eat the entire piece of toast? Was it a standard, commercial slice of bread?" I'll answer the question if it's asked, but I won't volunteer the real answers, because they're too shameful. (For the record, the toast is from a standard loaf, and no, I don't eat the entire slice. I get ritualized about it, and have to tear off about a third of it before I can eat the first bite.)

4. There seems to be a pretty common view -- at least in the people currently assigned to me -- that a central feature of any sort of eating disorder is a lack of insight on the patient's part. I can't speak to that issue in adolescents (can't really remember), but I can tell you that I know and am sick about what I'm doing to myself. I do have a lot of insight into what I'm doing, and why. I do realize that the people trying to treat me are likely to be the exception, rather than the norm, but just in case there's more of the 'patients must lack insight' ideation out there, reconsider it.

5. Do not make the mistake of thinking that a patient who claims to have an eating disorder must be seeking attention, or 'trying' to have one, or that paying attention to it will just make it real. Again, I'm 40 now. I have struggled with this for 27 years now, with periods of remission where I no longer obsessed about food or my weight. I know what is happening to me, and that makes it so much worse. I'm sure there are a lot of others like me.

6. When I say that I "can't" eat, I mean that literally. It's not that I "won't" eat, despite the "voluntary" nature of an eating disorder. Subjectively, I will lose all control, over every aspect of my life, immediately and irretreivably, if I eat anything beyond what I allow myself. What's more, the result will be a total collapse of my Self in some undefined, but dreaded way. Telling me to eat something more, or coming up with a diet plan for me really doesn't address that.

7. For me, at least, trust issues are pretty key in all this. I know that I need to feel safe, and I need to have that dread of gaining weight validated by a professional before I can even consider relaxing enough to work on this issue. Again, fear and shame and dread. Trust issues with ED patients are probably pretty common. Establish REAL trust, by at least acknowledging to yourselves that the fear and dread are real, even if the body image is distorted. That trust can help replace the restricted eating while your patient tries to recover.

OK, enough from me. Thank you for the opportunity to get some of this out. I really do hope that it's helped someone understand a little more about this.

Replies:

Re:Notes from a patient, by Valerie Kirby, Ph.D., 06/06/04 Thanks, Valerie -- finally quit therapy, by Hungry, 06/07/04 Re:Thanks, Valerie -- finally quit therapy, by Valerie Kirby, Ph.D., 06/08/04

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