There is a term for the behavior when a parent/parent figure uses a child as a confidant. They need them for their own emotional stability instead of instilling a strong sense of safety for the child. The term is sometimes referred to as emotional incest. That’s a strong term, but the damage can be as impactful as more overt types of abuse. It can leave the child confused, and feeling responsible for the well-being of those around them. It can cause guilt and shame for things that are the parents’ shame and guilt. It can make the world unsafe to the child who never had a place to go when they needed their own emotional needs met.
There can be a feeling of never being “enough”, which ties in directly with eating disorders, and the need to disappear out of shame of not being what those around them expect, or the misplaced shame of not being ‘perfect’, however that is defined. The role-confusion can leave the child angry, misunderstood, and difficulty knowing their own likes and dislikes when they’ve been programmed to only want what the offending parent wants them to like or dislike.
This doesn’t have to come from a biological or custodial parent. It can come from relationships built on the inequality of power. Boss/employee, therapist/client, doctor/patient, etc. Whoever has the “adult” (logical) ROLE can wreak havoc on the developmentally younger ROLE in the relationship. The “child” could be a fully grown and independent adult in their own right, but the “adult” takes advantage of their position, and uses it for their own emotional needs. It’s wrong no matter what.
Navigating ‘normal eating’ has been overwhelming, confusing, and I have no idea how I get to the point of being free of this restrictive disorder. I have doubts that I will. In many ways, I’ve accepted that I won’t ever be truly free from this. I don’t have a frame of reference for ‘normal’ eating, since it wasn’t part of my childhood and adolescence. Nutrition wasn’t valued, and the cost of food determined the frequency and how many meals/portions could be squeezed out of a can of something meant for 2 people.
Restricting was my parents’ only way of dealing with food. For my dad, who didn’t have very refined tastebuds, there were two categories of food- “I like it.” “I don’t want that again”, but if it was expensive, he might have loved something, but price dictated everything. He changed in his later years, going out to lunch often with his friends. He wasn’t a bad guy. He just didn’t value adequate meals or have any interest in nutrition. But he’d ‘graze’ all day (on what, I’m not sure since we couldn’t have the foods he couldn’t stay out of in the house). He was normal weight. He said he was chunky in high school, but photos don’t show that.
For my mom, it was all about being on a perpetual diet, though the specifics could get cloudy at times. She didn’t cook much, and we very, very rarely went to restaurants unless we were traveling, but even in Europe, we had envelopes of lemonade powder and a 2 liter thermos she mixed it in, and that was for all three of us for the day. We might get water later. Otherwise, she was always getting some new diet, or group to go to- Weight Watchers, Diet Workshop, etc. Some of that food wasn’t bad. She was thrilled when I wanted to diet, even though most of them were incredibly unhealthy. Her weight went from ‘hangry’ to overweight, but not by a lot.
A typical day for me in high school included skipping breakfast, a pickle, carrot sticks, and salami for lunch, and whatever budget dinner was on the menu in the evening. Kraft Spaghetti box meal (tangy one) was one of the favorites. I figured out that I might have averaged between 700-900 calories/day in high school… and that was fine with my folks- they didn’t know the ‘numbers’, but had no issue with my starvation diet since they were generally in the same boat, though didn’t realize it at the time. I just knew I hated it and was always hungry.
It wasn’t about not being able to afford food, but the absolute disinterest in fueling a body for the day. My junior year was packed with 8 classes and no lunch period to allow for drivers’ education. I was exhausted, and by about 3 weeks into the new year, I was cratering. A teacher noticed, and talked to me, which went to my guidance counselor (longtime family friend since I was 2 yrs old), and up to my dad (principal of that high school), and I got a royal chewing out for telling a teacher I was exhausted (and not really interested in waking up any longer). At any rate, I got to drop physics, and get a lunch period in.
And I’m terrified to eat more, which keeps me stuck because I don’t trust my body to work right and yet I’ve never given it a chance. I was not overweight in high school but it was during a time when everyone was trying to lose weight whether they needed to or not. So, I don’t know how to cram more in (while also getting fluids in without the NG tube) to bump up my intake. I get full really fast, and none of that discomfort has lessened in the past 4 years. I’ve eaten more in the last four years than I ever did prior getting ‘help’, and I’m pretty much over it. There are still fear foods. Not all fear foods are because of weight, but because of gout pain that is bad enough to fear.
For now, to help lessen stress about eating, I have cut back some. I want this excessive muscle gone. I’m still making sure there are enough carbs for my kidneys, and getting fluids in, but that’s about it. If a whole bag of Orville Redenbacher’s Smart Pop microwave popcorn is what sounds good, then that’s lunch- 240 calories for the whole bag. That’s all I can manage now- just eating what sounds good and doesn’t panic my head. I still have to keep track of everything for insulin doses and making sure protein doesn’t go too high. That doesn’t help ‘free up’ any non-restricting thoughts, but whatever. Right now, I need no pressure. And no rules (other than carbs and fluids). I also hope that at some point I can let go of these rules in my head, and be more relaxed about eating in general.
Eating has always been something that feels like I’ve done something wrong just by fueling my body and I know that sounds nuts. I have to ‘undo’ the stuff I learned as a young child and grew up knowing as ‘normal’ when it was anything but. I’m still listening to Tabitha Farrar and Elisa Oras, and others on YouTube. My logical head knows what they say is valid. My ED head can’t come to grips with that thing in the mirror needing to be fed, and fed more. I’m still listening for something that can break through this wall of shame around eating. I also wonder what I’d be like now if I hadn’t been bribed to lose weight as a 6-7 year old, or lived in a house that was always restricting. I’ll never know.
I believe Isabella Heineken. I’m saddened, yet not surprised by the Sylvain Besson (Swiss investigative journalist) article about Isabella Heineken of the Heineken beer family and her 4 year ordeal as a teenager being a patient of P Claude-Pierre. I’ve seen too many similar stories, and read enough to know that her story isn’t unique amongst patients of the person who seemed to offer so much hope, but never did have a nearly %100 cure rate as claimed in the ABC’s (American Broadcast Company) 20/20 episode in the mid-late 90s. That’s where I first heard of Ms. Claude-Pierre. And, why I wanted her for my therapist if I ever overtly relapsed. My head is all over the place writing this.
This has gone on for 40 years. The Barbara McClintock book (2002) has more examples of good, not so good, and abusive practices (some by staff) during the earlier years Ms. Claude-Pierre (“P” for the remainder of the post) was “helping” patients with eating disorders, leading to the closure of the Montreux Clinic in Victoria, BC, Canada.
There is so much about this that is sad. I’m all for accountability, as well as supporting those who have been harmed by anyone. The past 4 years of my life have been a rollercoaster of emotions from initial relief that someone understood me to the heartbreaking realization that I was a non-entity to someone who told me one thing, and showed me with actions something completely different. I wanted to be a success story. But all I got was financially drained and am still in lousy shape, with the longest period of active restriction in my life happening while being ‘helped’ by the person who was supposed to be able to get anyone through prolonged eating disorders. In previous posts, I’ve described a life of restriction that I refer to as active and passive- the passive restriction was how food was treated in my family, so my ‘normal’ until the last few years. During P’s ‘watch’ I also ended up in acute renal failure. Again. Fortunately, I have a good nephrologist.
For those still with P, has she denied you your education? Has she isolated you from friends and family? Does she have possession of your passport and/or money? Are you so emotionally damaged now that you can’t see the control and admiration she demands? Can you come and go as you please? Is she telling you to take (supplements) or eat things you either don’t like, aren’t safe for medical conditions, or are forbidden by her for unproven reasons? Has she given you a ‘special’ name to ultimately reinforce her power in your life? Has she asked you for money for personal reasons, not associated with your “therapy”? Has she suddenly restricted your computer time? Has she vilified patients who no longer see her as some heaven-sent rescuer?
I sent multiple emails to her when I was still a patient about things that were bothering me with her approach- which was basically ignoring me to help those who paid more to live with her, or other reasons- that’s how it felt to me, though she denies it. I sent her my reservations long before blogging. I got no response. Those emails weren’t seen for months, by which time I no longer considered myself her patient. While others were getting well starting after I began ‘therapy’ with P, I was paying to be blown off ( during part of that time, until the end of 2024, but she literally begged me to stay for another year without paying, and I got what I paid for). There was more contact if I sent her money for personal reasons which gave me less to survive on for myself (I’m on a fixed disability income that she knew about). She actually told me to sell personal possessions to get money to send to her (I have the screen shots). When I quit sending money, contact dramatically dropped (but she’d blame me for it, saying my perceptions were wrong… nobody can qualify someone else’s view on something that impacts them) and hearing from her less and less, finally only getting a call once a month with an account about various personal issues (then take a leave of absence and get well enough to come back and do the job).
As I said above, she didn’t see most of the emails for MONTHS, starting while I was still a patient, but wanted to control food again, She didn’t see messages for up to a week, so how was managing food supposed to work? I hope she isn’t sick, and is actually OK. She had been a source of hope, until I became a patient. After about 6 months, I was getting the first indications that things weren’t OK. She also told me her books (5 of them) would be published in late 2022 (the summer I started with her), and the first of five was mentioned in her blog in 2013. Now she says this year, “promising” to send me money when they are published… I’m not holding my breath when a simple phone call was often too much. And how about the year she said she was recording videos for a website that never materialized? She said that Louis Vuitton wanted to buy it (that company doesn’t ‘do’ online therapy) when asking me to sell things to send her money. I have the screenshots. So was I being blown off just to do other things, unconcerned that I was still floundering and never got past the early part of Stage 2 (of her 5 part wellness scale) ? But she had time for the 2-3 “kids” (adults) living with her.
When she did follow through on phone calls, she’d often fall asleep multiple times in one call. I’d have to tap on the phone to wake her up. She very often did not follow through on planned calls, leaving me hanging and postponing doing other things, When she told me to eat limited ‘allowed’ foods that I never ate regularly, I complied, and had to get used to crap I didn’t really want (she never made me eat things I hated- just had a line-up of foods that was a little weird for me). One night, after a difficult day with food in early 2023, she called me after getting home from ‘food police’ duty with a patient that ate at restaurants, and yelled at me while she told me what to eat. It was late at night in my time zone. I hadn’t heard that tone from her before, and it was frightening… “don’t take all day to eat that cracker”, “eat faster”, etc (I have medically documented swallowing issues, so dry crackers are often difficult, and she knew that). It wasn’t what she said, but it was the burning acid in her voice that was so alarming. That wasn’t common- I want to be clear on that. But when her usual tone of voice was SO different, it was incredibly scary. And another means of control by a tone resulting in fear.
At one time, she’d planned to fly me to Switzerland to stay for a few months, but I already have a personal policy that I don’t go anywhere that I can’t get myself home from without anyone else in the mix. I’m extremely independent, which may be one of the reasons I became less worthwhile to her, though she said she “loved me like a daughter”. I did have some emotional dependency until it turned into a need to protect myself emotionally.
“Therapy” consisted of socially toned phone calls. There was nothing about how to change my head. I sent her the information about my past that she asked for, but it was rarely discussed, and nothing about what to do with it. Nothing about actual nutrition info beyond her food rules (which were not nutritionally sound). I was told to avoid ‘nightshades’ (potatoes- though that was loosened up, bell peppers, eggplant, tomatoes with skin, etc). That cuts out a lot of vegetables and botanical fruits. I never heard about her “confirmed negativity condition”. I was supposed to get better just because she listened to me during those phone calls that actually did happen (there was an email response implying that).
The thing that is hard for people to understand when they hear about the negative stuff is just how disarming P can be. She initially comes across as being the saving grace of all things. Her tone is comforting and it’s easy to get brainwashed and breadcrumbed because there’s a feeling that a bit of her is better than none of her. She did make the initial eating less stressful. Then she would have to get off of phone calls to go and cook for those living with her… OK, fine. But don’t tell me that when for me opening the fridge door was a source of a lot of tears and SO hard. I didn’t want to hear that she had people who did nothing to get their own food, and just sat around waiting for it. I just felt more worthless. I learned that I should have listened to MYSELF when I began to feel doubts in January 2023. Admittedly, I slept better after talking to her in the earlier years. And then it all became a nightmare of constant doubt. I also didn’t want to give up on the hope I had in the person I saw on 20/20, but found that the person I saw on TV didn’t really exist, for long anyway. It’s hard to feel that someone really gets it, only to find out that may not be the case.
She ended up restricting my food more than I did. There were fear foods and a lot I restricted, but I’d always been a portion-shrinker more than anything. I’d eat many things that some people with EDs won’t eat, but I’d have a bite (teaspoon), or a fraction of a portion. When I told her that my physical hunger cues were starting to kick in, she told me to eat rice cakes and vegetables. Yes, I want to lose weight being ‘atypical’, but ALL of the current eating disorder recovery information I’ve seen after trying to find some help since it wasn’t coming from P talks about eliminating all restriction, no matter the person’s weight since restriction just keeps metabolic rates down (something that P talked about, but her food instructions didn’t match up).
She is still working from her views first formed in the 80s. After the first 8 months or so, she never asked about what I ate. I stopped sending photos of what I was eating after she told me a weight of a new patient (not the weight on arrival, but that’s how she made it sound), and I was ashamed to eat at all, but she just assumed that it was because some people don’t like to talk about what they eat. I was barely getting 1000 calories/day. It felt like it didn’t matter if I ate or not. Telling me someone weighed 29kg was incredibly triggering, and the vast majority of eating disorder therapists would know that. When I followed my dietician’s advice to gradually increase calories (whom P had required me to see here locally, which was good), I gained a lot of weight, which has made things harder emotionally, and my body started to build back a lot of muscle. Muscle weighs more than fat, and I want the muscle gone so the scale shows better numbers. That’s where my head still goes after 3+ years as a patient of hers. I’m no different.. still have to have ‘numbers’ that feel safe.
Others have said that P’s presence in their lives eventually waned, and they felt abandoned. I can relate to that. She knew of past abandonment and trauma issues, and just added to them. Even if I had any trust left to get help, I couldn’t afford it.
But here’s where it gets emotionally difficult. I don’t wish anything ‘bad’ for her. She has to live with herself, and that must be difficult with needing to move so often. I don’t want her to be ill. I do wish she’d retire, both for the sake of patients who end up in the same state as so many of us, but also for her to have time to enjoy her life without ‘strays’ living with her. I wish that she could see how she impacts others without blaming the patient for things they point out about how she comes across to them (got an email from her chewing me out over that). l wish she didn’t seem to need the validation from vulnerable people who are known for their empathy and ability to sense the void in others.
I know the Besson article is difficult to read (it’s possible to translate it bits at a time, but I don’t know the rules on doing that legally for posting it all in English here), but if there wasn’t truth behind the story, it wouldn’t have been written by one of Switzerland’s most highly regarded investigative reporters. Someone like that doesn’t publish something without doing homework, and he did that for a year before it was published. It’s been overwhelming to see the impact on yet another person, and know the fear of speaking out… I’m scattered writing this because of the ‘surveillance’ by P’s live-ins (blocked some more FB profiles today). But were it not for the Besson article, I wouldn’t be writing this. The same things in the McClintock book continue to happen. That’s sad.
I believe Isabella, and am thankful for her courage to speak out. I understand the fear about coming forward. She encourages all of us to speak up, so for Isabella, I won’t minimize my story, though I wasn’t held captive physically like she and many others were. But in addition to the eating disorder, I now feel I have to recover from P as well, and that’s hard to reconcile with the hope I once had.
I don’t know how to do this. There is no interest in food- and not just my eating disorder ‘head’. Physically, nothing sounds good. I have stuff here that I “should” like, but there’s no interest in eating it. I’ve been forcing food that seems “normal” but not anything that stirs up too much fear. I’ve given up on trying to get more protein in. If I happen to want it, OK (still have to limit quantity because of kidneys and gout), but I’m not putting extra effort into seeking it out. I just want to be ‘normal’, whatever that is, and when I look in the mirror, I just see a disgusting body that is not deserving of food. I wouldn’t see someone else, my size or larger, and deny them food- but it’s something that has been in my head for over 55 years. I don’t deserve what others do, even if it’s just food to stay alive.
I’ve been trying to do ‘low pressure’ foods- like cereal and milk for breakfast, a baked potato for lunch, and some broccoli, rice, and peanuts for dinner. That doesn’t get enough calories or protein in for the day- and I’m sick of forcing the ‘numbers’ to come out right. I don’t want to think about it… and yet it’s all I think about. There is always something in my head telling me not to eat ‘enough’, though I’ve never gotten any consistency with the calorie amount set up as my goal- I haven’t gotten close to that.
With protein, it seems that a break now and then isn’t such a bad idea if it can reduce the workload of my kidneys. I know a good chunk of the weight I gained when I tried to eat more is because of muscle gain. My legs used to be atrophied enough that the tendon on the side of my leg, near my knee, was visible- and the reason I ended up with a wheelchair for longer distance walking. Now, my thighs are like bricks with some fat over them. My right bicep had basically disintegrated, but now is much larger. I know muscle is good, but I don’t want it if it means more weight, and muscle weighs more than fat.
I’m still trying, but I’m tired of it. I haven’t quit eating, but I’m not willing to spend so much time trying for something that feels uncomfortably excessive, no matter what the numbers say. I just want to pick at the things I do like and if it works out, fine. If it doesn’t, then so be it. Getting the “food rules” from the ex-therapist out of my head is taking a while, but going better. I’m more interested in being comfortable, and not forcing stuff I have no interest in consuming. I still aim for enough carbs to avoid acute renal failure again, but that’s the most I’m doing right now.
The worst thing I’ve ever done was go on the extreme restriction ‘diet’ in the summer of 1981… the second was seeking help from someone who ended up causing more damage. Undoing the damage, and also trying to ‘rewire’ my brain by doing the opposite of what my eating disorder head says is exhausting, and doesn’t move very quickly. To get ‘positive’ stuff into my head, I’m using a radio station 24/7 that has upbeat songs (happens to be contemporary Christian music with a lot of mental health ‘boosting’ songs). I do wake up with positive messages from the songs going through my head, so that is good. The volume is low enough not to bother my sleep, but loud enough that if I don’t have anything else on (movies, videos), I can hear the songs playing softly.
My dietician asked me something today, and I hadn’t even realized that I’ve been doing it for about 6-8 months. She asked if I still freaked out about having to eat X, Y, or Z, but knew that I needed to do it because it was the healthy thing to do. Yup. I do !! I AM thinking differently. I think the YouTube videos are sinking in, at least “enough” to make a difference. I knew I’d been able to put enough in a bowl to get food in- but not paid attention to my thinking around it. It has been just a chore to get done. But there is the focus on not letting carbs drop too much to strain kidneys.
Since Ex-T has been MIA for nearly all of the last 5 months (and sketchy consistency before then x 2+ years), I know it has nothing to do with her. I still have trouble ‘feeding’ that thing I see in the mirror, but I know that to keep my kidneys from going into acute failure again, I have to get minimums in of protein, carbs, and fat. That’s the ‘loophole’ in my head – keeping my kidneys going. And Ex-T’s absence and lack of phone calls actually made has forced me to figure it out on my own when I’m in the moment. She tended to want people to come to her and ask for more contact, and I’m not into that- either do what is discussed, or quit saying that any phone call is coming. SO, her absence has made me stronger.
I’m still stuck when it comes to eating something because it sounds good, but I can consistently get the macros in, even if the assortment is a bit odd (breakfast tomorrow- cheese, crackers, strawberries). While I still fear gaining weight, and don’t enjoy eating or food prep, I’m still getting it done. And my weight has been stable since regaining what I’d lost, and is going down slowly again. I am wanting to lose quite a bit of weight, but I don’t want to go backwards. This has been hell to get to this point, and I’m nowhere near comfortable with food sitting in me.
Body composition has also changed for the better. I used to have visible tendons behind my knees from muscle atrophy- which is why I have a wheelchair for larger areas. The tendons aren’t visible (not thrilled with that if I’m honest, but at the same time, I know that muscle atrophy isn’t good). My right bicep and both calf muscles were essentially gone. They’re back, though I still have too much fat. I have little bits of hair on my arms for the first time since it all fell out during chemo in 2010. Protein has been an issue for decades d/t prep and cooking time, and the changes in how much muscle has grown back is noticeable. I’ve never eaten this much protein for this long in my life (60 grams/day per kidney disease limits).
It took me until tonight to realize what that question (and answer) meant in the overall picture of recovering.I’ve got a toehold now ! I don’t cry when I open the fridge door and have to choose something. There are days when I really don’t want food, but I make something happen, even if it’s just snacky stuff or a protein bar. My dietician talked about peanut butter and jelly sandwiches (not allowed when I was a kid) because of limited protein options, quick/easy prep, and the healthy fats in peanut butter. Even 4-5 months ago, I would have freaked, but I think it’s OK to try. I know I like them, and especially with Aldi, they are very affordable which is huge now. It’s all about how i portion it.
I’m pretty pleased with this and at the same time, it’s scary. Getting ‘too’ comfortable with food is still a threat in my head. I still manipulate the numbers so I don’t go over my ‘quotas’. If I eat something unplanned, I redo the rest of the day’s food plan. BUT, at least there is a shift towards the good, and getting well.That is the most encouraging thing that’s gone on in 3 1/2 years. .
PHOTO- mine; window in the kitchen at my childhood home. Designed by Tom Heflin and made by Frank Hautkamp
It is so hard to justify eating when I see what is in the mirror. Logically, I know that food is fuel, but for as long as I can remember, it was seen as something to be avoided at any cost, and the value of nutrition was never in the mix. As an adult, and nurse for 35 years, I had to take a nutrition class (skimpy on useful info) and learned more disease-specific nutrition issues during nursing school. And none of that ever seemed like anything I deserved. Even when I had lost weight prior to college, and was at the lower end of what looked OK in my body type, I still had to compensate for any calories consumed.
SO, I’m trying to find ways to go against my head, but not add weight. I’m back to my pre-relapse weight (again), and some things I’ve read said that it’s more likely my weight will stabilize as long as I don’t start to restrict more again. That is so hard. Eating is uncomfortable physically, and the shame of eating is still strong. I get away with getting food in if it’s going to keep my kidneys from going AWOL, but that’s about it. Everything else is a constant reminder from my eating disorder voice (head) that i’m not good enough to eat food I enjoy. There has to be a purpose for the food to justify it.
My dietician told me it’s OK to have something once in a while just because I want it- no rules other than safety with the chronic medical issues that dictate some food rules that I can’t eliminate- but hope to get more settled. I will be doing a pre-holiday grocery list to get later in November, and I decided on Peppermint Stick Ice Cream, which is seasonal here, and a favorite of mine. My head is already chastising me for something so indulgent, and yet I don’t plan on eating a lot of it, but being able to taste something I really used to enjoy. It’s been at least 12-13 years since i had it, and like usual, I had some and then threw the rest away. This year, I plan to divide it into ‘safe’ portions, and put them in airtight cups to eat during the remainder of the cooler months. That sounds so stupid to have to plan ice cream like that. But it’s either that, or I can’t bring myself to eat it.
Getting fresh fruits and veggies has been good again. I have to be careful that the low calorie nature of produce doesn’t require increasing other foods to the point that volume becomes very uncomfortable. It seems there’s always something physical that keeps the mental aspect on a rollercoaster trajectory, and that can be exhausting.
One of my favorite meals (now that there are no external ‘bans’ on any foods or food groups) is a chickpea salad. I combine canned chickpeas, kalamata olives, feta cheese, red/yellow/orange bell peppers (any one or combo), cucumber, red onion, a few croutons, and a Greek vinaigrette. It’s super simple, and good for a few days, so prep is maximized. The croutons and dressing go on last minute. Lettuce doesn’t really have enough nutrition to justify the expense, so my salad is made from salad toppings. I like meat, but with gout vegetarian options are safer for avoiding gout flares, and I like the fresh veggies in this. It’s taken a long time for my head to let me say something is a favorite. ‘Liking’ something has been too close to ending up on some wild binge, though I haven’t really binged for a long time (decades). I’ve eaten things I didn’t plan on, and that freaked me out, but nothing compared to 1981 when I only had an apple or 1/2 baked potato each day during the week, and then went nuts on the weekend.
The little steps are things most people never think about, and that’s great for them. For me, making the jump from shame to viewing food as fuel seems like climbing Mt Everest on my hands and knees. To ‘want’ something is to risk eating something that has been condemned since childhood. And I still have trouble seeing food as a ‘need’, even though my body (kidneys in particular) have made it clear that they’re fed up with running on fumes. In some ways, the acute kidney failure twice in 4 1/2 years was a wake up call that I could deal with because it wasn’t requiring that I feed myself, but consume enough to protect my kidneys. That probably sounds whacko to ‘normal’ people, but at this point, I’ll take whatever sinks in that leads towards being healthier. At my age, I don’t have more time for failed attempts.
This is so hard. I’ve never known “normal” eating, and now have the Ex-T’s “food rules” to undo as well. The entire idea of restrictive eating disorder therapy to undo the restrictive eating disorder is NOT to have food rules (other than those I have to deal with for medical issues- diabetes, kidney disease, and gout). I just want my head to settle down, and not dictate what I eat, how much, when, etc. I’ve had periods of time when it was all less intense, but for the last 4 1/2 years, it’s been pretty constant- the longest continuous time in my life when I’ve been so controlled by ‘my head’ to this degree. I’ve been in acute renal failure/acute kidney injury twice because of not eating enough in those 4 1/2 years. I have to get this sorted out. I do have a dietician, and I’m thankful for her.
Every time I make a day’s food plan, it’s all about ‘the numbers’. I don’t eat things I like UNLESS they also fit into the days ‘numbers’. Macros (protein, carbs, fats), as well as sodium (can’t go too low or my BP drops which puts my kidneys at risk, and muscle cramping is horrific). If I spontaneously eat something different during the day that messes with those numbers, I have to redo the rest of the day so the ‘numbers’ are OK again. I’m trying to figure out how to just eat stuff without focusing on the stupid numbers as much, but it’s all I’ve known for 5+ decades.
My hunger cues have been messed up for a long time. For many years, I didn’t feel physical hunger, even though I thought about food constantly and still do. I am starting to feel physical hunger again, and it’s terrifying. I have images of me eating what I want until I feel full and ending up gaining even more unneeded weight. In reality, it doesn’t take much for me to feel full. But the fear is very real. I view myself as already grotesquely overweight, even though when I see TV shows about extremely obese peoples’ weight loss journeys I don’t judge them. I just wonder what hurt them so badly that they are hurting themselves so much. I know that sounds hypocritical. I KNOW all of this is bonkers. And, I can’t just flip a switch.
I want to set up a day when my blood sugars are more stable (parathyroid hormone is wonky right now, so insulin resistance is increased), and then just try and – for one day only (to minimize panic in my head)- eat what sounds good when I’m hungry, and not worry so much about anything that isn’t focused on getting me stronger. If I make it for only one day, I don’t have the pressure to do it for longer while giving myself the chance to see that it is possible. Then, I can do 2 days, etc. In the meantime, I’m trying to have one thing every day- even if it’s just 15 grams more of something, that is against what my head wants, which is eating close to nothing, although I’m eating ‘enough’ to keep kidney function stable at this point. I do get some reprieve because of the kidney situation, but it’s not all-encompassing. I HOPE that if I can get my eating more ‘normally’ that my kidneys will do better. I am not someone who would do dialysis if it came to that.
I have found that I do better if I can avoid sweet foods in the morning. I just don’t like them, so the past 3 1/2 years of being strongly encouraged to eat yogurt and berries, kefir, or oatmeal/porridge, and the horrible sweetness of those, have been miserable. I couldn’t find a savory oatmeal recipe that sounded edible. Scrambled eggs were/are allowed, but when my blood pressure isn’t stable, or I’m in a lot of pain, it’s hard to do a lot of stuff that requires prep and/or cooking. I much prefer something like cheese and crackers, and maybe some fruit that has a bit of tang, or even leftovers from another savory meal. Many countries have soups as ‘normal’ breakfasts, and that might also be a good thing to try.
Single serving items are also helpful, though I have to be careful with prices. For frozen entrees, I have several that are budget friendly and taste good, and only require being popped into the oven or microwave. Lean Cuisine has a lot of flavor options, and for a substantial treat, I’ll get Amy’s Kitchen or MichaelAngelo’s frozen single serve entrees. With some products, I can count out the portion size-and that’s doable. I do like the flavor of a lot of different ethnic foods, so that helps as well. I do have very specific dislikes, but those are easy enough to avoid.
It’s been good to be having more fresh fruits and vegetables, though with the prices in the US, most are a luxury. It helps to incorporate them into chickpea salads, or other food ‘stretching’ meals, and keep the frozen and some canned items for more ‘bulky’ vegetable servings. Lettuce is too expensive for what it provides, so most of my salads are what I’d put on a bed of greens. It cuts down on the volume without cutting down on the nutrition that comes from the chickpeas, peppers, onion, olives, cheese, and croutons. Doing seasonal grocery lists has been useful, as have some frozen options. I could have fruit and veg with Ex-T, but with the other stuff she wanted me to get in, volume tolerance was a problem. Now, I prefer to prioritize fruit and veggies more, and ‘fill in’ with protein, starches, and fats with an emphasis on nuts, olives, and the occasional avocado or premade single serving of guacamole. It’s still a challenge not to feel too full, but I’m making little steps.
Mostly, I need to quit freaking out about the numbers at the end of the day. I don’t let myself get to a calorie level that is too scary, and that’s still a problem. Calories should only be an issue in that I get enough to fuel my body for continued healing. Not that are restricted because it’s what the eating disorder wants.
When I returned to the University of Illinois after the winter break, I limped through emotionally, and things quickly became critical. I was still freaked out about being on academic probation (not in my perfectionistic vocabulary), and very depressed. I thought I was falling everything. I wasn’t thin enough, I was evidently very stupid, and I didn’t see any way out that would end well. And the idea of ‘ending things’ was what finally broke me down. The therapist I’d seen the semester before finally heard me say something besides “I don’t know”. What she got was “I want to die.” and followed up with my plan that would have been lethal, and cause trauma to other students on my dorm floor.
She called the university fire department to take me to the university health center for ‘holding’ until a bed could be secured at a psychiatric hospital near Chicago. The health center was for fairly minor problems or routine surgeries like appendectomies, and I guess for students who were being sent elsewhere. I was at the university health center longer than anticipated because of a severe February blizzard that made traveling to get me not possible. I wouldn’t go with my parents, so a family friend and her daughter came to collect me as soon as the roads were passable. During those days, I didn’t eat and had my jeans and shoes highjacked to prevent any ideas of ‘escape’. At that point, I was too tired to put up much of a fuss, so I sat there while dorm friends came to say their goodbyes. It was horrible. The staff were all very pleasant, but those goodbyes were SO hard. I didn’t want to leave, but knew I couldn’t stay.
When I got to Forest Hospital in Des Plaines, IL, my worst scenario played out. I hadn’t figured on my parents needing to sign me in since I was on my dad’s insurance. I felt I’d failed them, and was so ashamed. We did the obligatory hugs through their absolute denial and disbelief, and I went onto the locked adult unit, scared shitless that I was entering “One Flew Over The Cuckoo’s s Nest” territory. Instead, I found some very 70s floral wallpaper, a TON of cigarette smoke (like clouds), and people with all kinds of diagnoses from depression to raging schizophrenia and hyper manic bipolar disorders. I was the youngest on the adult unit, and terrified. Fortunately, my roommate was in the ‘mundane’ depression category and not scary, so that helped. There was one patient there for the rest of her life after falling out of a 2nd story window some years before, and ending up with a severe brain injury. She was a ‘constant’, which in itself was very sad. She wasn’t that old.
The first thing my psychiatrist did was ban contact with my parents for a month, to figure out why I was so opposed to seeing them. He also started me on the first of many medications, when I just needed food. I’ve never been depressed or suicidal without being very malnourished, but that realization wouldn’t come for several years. So, I settled in to the hospital routine. My folks came to family group sessions with other families and patients, but never really understood the purpose. Dad’s comment was “the sandwiches were nice”. Great, Pops, that was the goal, said no-one ever.
The dietician was easy to deal with- too easy. I talked my way into an 800 calorie/day meal plan. The chef (yup- a chef) at that place was incredible, and being a private hospital before insurance companies decided to play doctor without licenses, the food budget was first class. Prime rib, duck (yuck), shrimp, salad bar, and desserts with honey (no refined sugar). For someone who was afraid to eat, it was a minefield. But, it was also good food, and for someone who grew up being restricted by my folks before I took over that behavior, it was great when I finally allowed myself to eat something.
I was not so well-behaved when I was being monitored for food intake. When I had to eat on the unit vs the dining room, I’d switch out the meal cards so that I got some huge salad for a patient on a weight loss plan, and gave him my double portions. That was figured out fairly quickly… the diet guy wasn’t complaining about my donations, but the staff were not amused. Then they started me on Sustacal (now called Boost), and I poured most of it into the potted plants. That didn’t smell so great after a few days. One day, I tried to go AWOL, and hurdled the gardener’s wheelbarrow, with the gardner still attached at the handles, and got about 50 yards away before passing out on the sidewalk. I was half carried, half dragged back to the adult unit, in a haze of iffy blood pressure. Early on, I spent a fair amount of time in the quiet room (dumb name when one of the patients was in there screaming at all hours), and even in leather restraints, which was a common practice back then. I had small enough hands to get out of the straps, so then they just medicated me with heavy duty meds before leaving me in there, and peeking in the little window every few minutes. It was definitely a different kind of education. My psychiatrist never discouraged the acting out, because he sensed that I was a bit too tightly wound for “normal”.
I went without eating anything for 2 weeks, and ended up in severe ketosis that was bad enough that one of the nurses smelled me from just walking past me in the hall. That bought me a seat by the nurses’ station desk while they pumped me full of orange juice and toast. My mouth was so dry that the toast literally stuck to my mouth.
Bulimarexia was a term used back then for what would now be either anorexia, bulimic sub-type or EDNOS (atypical anorexia). Because of my laxative abuse, and the thinking at the time (early 80s), any purging was put into some kind of bulimic category. I didn’t binge like a lot of binges were described at that point, and if I hadn’t purged, the food I did consume would not likely have caused much weight fluctuation. But in my head, any unplanned ‘diet friendly’ foods were binges, so had to be ‘gotten rid of’. I didn’t vomit (tried, but I wasn’t any good at it), so laxatives were my purging preference. For some reason, I thought that was more ‘dignified’ than vomiting. Both are pretty disgusting. I also did a lot of running in place in my room, and when that was discovered, I spent about a week in the day room being supervised around the clock. I had to sleep out there in slightly dimmed lighting and the fog of 24-hour smokers. I ended up starting to smoke there.
The staff were kind to me, and my psychiatrist was also a decent sort. I can’t say much was resolved with the eating issues, but they kept me alive, and with food, the depression lifted. I was still on meds, but I think that the food did more good than the meds ever did. I was released after 3 months.
I planned to return to the camp I’d worked at the previous 2 summers, though only for half of the upcoming summer season to avoid too much pressure. My former camp supervisor had visited me while I was at the hospital, I’m guessing to be sure I wasn’t drooling in a corner somewhere, and he was satisfied that I was still the same person who was harmless, but had crumbled the year before when I became anorexic at the same camp. It was hard being there that summer since I wasn’t in the nature center, but because I was going to be there for only 1/2 of the summer, I was assigned to be a cabin counselor. I guess that was a compliment since they were turning me loose on actual kids and not the snakes and goofy ferret. It was still good to be doing something I loved, it got me away from home, and people didn’t treat me like defective goods for having been hospitalized.
OK, so it’s time to start doing things to move forward. I won’t lie- I’m not even sure where to start, but I know that I have to come up with something that will work for me, and doesn’t seem forced (other than making sure I eat what I’m supposed to, but not be rigid). I have some guidelines from the dietician i’ve seen for many years that include the restrictions I have because of diabetes, gout, and chronic kidney disease (from hypo-perfusion- my blood pressure and heart rate during acute restriction didn’t ‘feed’ my kidneys). I have a number of other chronic medical conditions, but these are the ones I have to deal with in regards to food. It’s a pain in the butt, and does nothing to help me not be focused on ‘the numbers’. I’ve got ideas on what to work on, but I need to get some specific goals that aren’t overwhelming.
People talk about fear foods all of the time in eating disorder recovery videos, and my ‘thing’ is more about the fear of portion sizes. I’m willing to take a bite or two of a lot of things, but entire servings freak me out. At one point, during the relapse of 1995-1996, eating an egg was ‘bad’ because it was a ‘whole’ egg. IF I was asked if I’d eaten I’d think that I’d had enough if I tasted anything. One spoonful of something was ‘enough’. I know logically that isn’t right, and I’d never support someone else doing that. This all started when I was 6-7 years old, and my mom literally bribed me (with cash) to lose weight when I wasn’t remotely fat. I got the very clear message that eating wasn’t something to indulge in, and that eating more than one container of yogurt for a meal was gluttony. No crackers or fruit- just a cup of yogurt. It stuck. That was more than 5 decades ago. Yup… I’m bordering on ‘geezerhood’, and still dealing with a stupid restrictive eating disorder.
Ordering from delivery menus is a nightmare. It can take me 3-4 hours to decide on something, and by that time there’s a good chance that the restaurant will be closed. Then I fall back on protein bars or protein water via the NG tube I’ve had in for most of 3+ years in order to get enough fluid in for my kidneys to stay interested in functioning at all. I have a few places that aren’t too horrible, and the idea that someone else put the stuff together means I can’t screw it up, though it’s also terrifying not to know exactly what’s in restaurant food. If I can’t find the nutritional info, chances are, I’ll panic and move on. Individual frozen entrees are also helpful now… but it took about 2 years to be able to eat those.
I think that instead of fear foods, I need to look at fear ‘situations’. Like if I order something without looking at the nutritional content (except for carbs to know insulin dose, grams of protein so I don’t go over my limit, or type of protein so gout doesn’t flare up). To be able to order something just because I like it has become completely foreign. I am so into numbers fitting into the food log that I don’t bother with just wanting something. That needs to change. I can finagle the amounts to avoid any health issues. To order something because it is something I either want to try or used to eat now and then would be a big step. Even if it’s just adding it to my grocery list- it doesn’t have to be delivery food.
Something else I need to work on is not panicking when I feel physical hunger. I hadn’t felt it for a LONG time (I’m talking at least 12-15 years), and it’s coming back. Not amused… but I also know that my body is trying to work again, and it’s supposed to work out that if I feel hungry, I eat. Sounds simple to most folks. That is another nightmare situation. I’m terrified I’ll just keep eating, and I have legitimate weight to lose. I’m not a candidate for a reality show, but I’d feel better with less on me. My joints are a mess, and it’d help with pain if I dropped weight. But I have to do it in a way that doesn’t mess me up more.
There’s also mental hunger, which has been around for a long time, and I very rarely give in to it. But it’s a survival thing- the brain is focusing attention on what the body needs after periods of restriction (this latest more intense restrictive period has gone on for about 4 1/2 years- the longest yet). The preoccupation with food was also seen in the Minnesota Starvation Study after WWII, when Dr. Ancel Keyes studied the impact of restricting food in otherwise healthy conscientious objectors (who wanted to contribute something). They all became fixated on food. They didn’t have eating disorders… they had a deficit of calories and nutrition. So, I need to figure out how to deal with that in a way that doesn’t make me more freaked out.
I know where I need to change things. Now I just need to start doing something. I need to move forward.
