Raising an Eating Disorder

When I got any sort of clarity about the origins of my eating disorders, I realized they started off pretty early in my life. I don’t blame anyone on what I did as an adult; that’s on me.  But I was given some pretty twisted information about food and eating from a very young age.  There was no malice- just an expectation that I look like the petite kids at church. I’m not built ‘petite’.  I look back at photos of me when I was five to seven years old, and there was nothing fat about me.  My mom, however, felt the need to make me ‘diet’ lunches…I never had PB & Js, or even bread very often- more like a boiled egg, a piece of fruit, and maybe pretzels. Maybe.  She paid me to lose weight when I was 7-9 years old.  A dollar for every pound, and wait for it….. a large bag of candy for every 5 pounds. Never had junk food or desserts unless it was a holiday or birthday.  I was restricted externally.  The messages were that food was something to be feared, and appearances are so much more important than health.  Those messages stuck. It’s what I knew. Mom was always on some diet, or attending Weight Watchers, Diet Workshop. or some gnarly diet. She meant well in her own way.  The lessons learned cost me a lot. But I don’t blame her for doing the best she could per her frame of reference. Dad was also very weight conscious, but he wasn’t an active participant in my food restriction.

When I was in high school, my mom was never more invested in what I was doing than when I was on a diet. Yes, she drove me to figure skating lessons (and other activities, mostly at church)- but she also required that I weighed a specific weight before she’d take me or pay for private lessons  (actually quite random as she drummed it up in her head). If I didn’t weigh the ‘right’ amount, I’d run the neighborhood to sweat it off.  There wasn’t any cruelty in how she presented her demands, but it took a toll.  I was told that one container of yogurt had sufficient calories to equal a lunch. Eating more than that was rather gluttonous.  Shame on me for wanting more. At ages 13-14.  I remember making ‘pizza’ out of flour and water (wouldn’t be noticed ‘missing’), ketchup, and dried oregano… there was nothing for after-school snacks. I was hungry after school, and that’s what was available if I hadn’t had the chance to sneak off on my bike and hoard things from the nearby grocery store and drug store.  I’d pack things in my socks and pants to sneak them to my room. Not ‘bad’ stuff- usually dried fruit and crackers more often than candy. My babysitting money was quite handy for that. If I went to the mall with my mom, I was allowed a huge pickle for a treat. Nothing ‘good’. Just a sodium bomb.

But when I was on a verbalized ‘diet’, mom was all ears. And the wallet opened in a heartbeat for the latest fad.  She’d fork over whatever I needed for all the eggs and grapefruit required to follow a ‘diet’ that would put me into ketosis, drop about 15 pounds in two weeks, and leave me feeling like I’d been mowed down by a backhoe. But, I’d lose weight…what could possibly be more important than that? I competed in high school with other students, and I always won- I could tolerate 500 calories a day for weeks.

In the summer of 1981,  before my freshman year at the University of Ilinois-Urbana-Champaign, I decided I needed to get rid of some ‘fluffy’ weight before heading off to college. It so happened I would be working at a church camp as a nature counselor, and have absolutely nobody telling me what I could or couldn’t eat. Perfect !   I arrived for the staff orientation with methylcellulose tablets that expanded when I’d chew them up and follow with water (to feel full), some over the counter diet pills (that have since been removed from the market because of cardiac issues), and my trusty scale. I was primed.  And then I met a bulimic anorexic who was very glad to give me tips on losing weight, including the use of laxatives. It wasn’t her fault that I had genetic predisposition, and had been raised to think food was bad.  I’d repeatedly been given laxatives as a child (with very embarrassing results for which I was blamed; who gives adult doses of laxatives to their kid and then sends them to school? I had a history of constipation since birth, but adult laxatives? The doctor prescribed something age appropriate), so didn’t figure that would be too hard. I never did get the hang of puking. Not my thing, thank God. I tried, but even when I was sick I didn’t throw up…went something like 15 years without throwing up, and then only with migraines and once during chemo. I’ve never purged by vomiting.  Laxatives, diuretics, restricting more, or leg-numbing exercise were my vices- besides the ‘high’ from not eating. Endorphins are a dangerous thing with eating disorders.

The first week of my pre-college weight dump, I lost 17 pounds. I remember one staff member who had been on a biking camp week coming back and not recognizing me. I didn’t see much difference, except my jeans were falling off. I called mom, who was thrilled (no alarm at how fast I was losing weight at all), and she sent up a pair of suspenders with a family bringing their kid to camp ‘until I knew what size I’d actually need’.  Within five weeks, I’d lost about forty pounds… 4-0 pounds.  And I was abducted  by a cruel beast called anorexia. People at camp tried to talk to me, but I was still doing my job, so there wasn’t much to be done, except express concern. I thought they were going overboard.

When I got to the U of I, I was an obvious ‘problem’ very quickly.  In late August in Central Illinois, it is hot and humid.  I was going to the water fountain on the dorm floor wearing six pairs of socks and my winter coat. When I was ‘tattled’ on to the resident advisor, she and the residence hall director could still feel ‘cool’ through my socks. They called an ambulance. I was mad. I was also kept overnight at the university health center, and had to talk to a shrink before returning to the dorm. The diagnosis was given- anorexia nervosa. They used the criteria in vogue at the time; I wouldn’t have fit into the DSM-IV criteria as it requires a specific weight, which, in my opinion, leaves many people out there still suffering because they’re not ‘sick enough’; they still die.

I had to go to counseling or be sent home then.  OK, so I had to show up at some therapist’s office once a week.  Whatever.  I still don’t know if that poor woman ever knew if I spoke any more English than “I don’t know”.

And I didn’t know. I had no insight whatsoever as to why I was self-destructing.  To me, I was just trying to get to a ‘decent’ weight.  My goal weight was less than 80  pounds… was that a problem?  I didn’t think so, and didn’t understand why anybody else thought that was an issue. My body, my goal, my business. For the most part, I just avoided people. My roommate moved out because I was too quiet…And at 135 pounds on a 5’7″ frame (degenerative disc changes have shaved an inch off now), my ribs stuck out; I’m built funny. My dorm neighbor would wince when she saw me in my skating leotard on my way to the campus rink. Losing another 50+ pounds wouldn’t have worked- but I didn’t see the problem. That was a problem.

And food… I avoided food.  My usual Monday thru Friday ‘menu’ was four ‘meals’ of ten laxative tablets and a 16 ounce bottle of Diet Rite soda.  IF I got snagged into showing up for dinner, I’d eat 1/2 of a baked potato, and then run the twelve flights of stairs to my room. For my PE class, I ran to attendance, and then ran back to the dorm as my personal activity plan. (I got a ‘B’- not good, but I was starting to fall apart).  On weekends, the hunger finally got me by the scruff of the neck and hauled me into an eating frenzy that could include two tubes of Pringles, a pint of dip, a pint of ice cream, a package of cheese (8 ounce), candy, and when I was really desperate, going into the floor trash room and picking the cheese out of the pizza boxes left from Friday and Saturday nights. I never got caught, and I honestly don’t think I would have stopped if I had. I may have been more careful, but when the binges hit, there was no stopping them.

Eventually, I couldn’t function in a school setting, and was extremely depressed at my falling grades. My therapist decided early the next semester that staying in school was no longer an option. I was too exhausted to do anything, and I was miserable. I also wasn’t all that safe, so a liability to keep around.  I was taken to the university health center/hospital (by fire department escort) until someone could come and get me (NOT my parents- I made that clear. I couldn’t face the shame of being shipped to a nuthouse). There was a blizzard that year, so I was there (with my shoes and clothes locked up) for a few days until the roads were clear. Then a former church youth leader came and got me and took me to the hospital.

I was sent to a psych hospital, as eating disorder patients were back then. There was no specialized treatment, so I was in with the raging schizophrenics and wet-rag bipolars in their ‘down’ phases. There was the one guy who did somersaults down the hallway for 30-40 minutes at a time in a manic phase (geez, made my head hurt to watch him).  And the girl who screamed an unearthly scream in the ‘quiet room’- she’d fallen from a 2nd story window and had head injury issues. That sound was incredibly disturbing, and made the blood run cold for all who heard her. I ‘just’ didn’t want to eat…and I kept company with some serious psych patients. At least it was a private hospital (state hospitals still existed), which helped a lot, but it was no spa-setting like they have now.

I wasn’t a nice patient. Oh, sure, I was ‘nice’….but I didn’t like the ‘rules’.  It was figured out fairly quickly that I’d only eat a percentage of my meal tray…so they ordered double portions. That was easy to fix- just trade name cards with the guy getting salads that would make Bugs Bunny shake with excitement. No problem, and the salad guy wasn’t complaining…until we got caught.  Then there was the canned supplement drink that was something between Kaopectate and a really old milkshake. The potted plants didn’t seem to mind them, so I was glad to share.  Until I got caught.  I could run in place in my room every evening, and not be seen for a couple of hours at a time…until I got caught.  I ended up having to spend 24/7 in the ‘day room’ and have someone parked outside the door if I needed to use the bathroom.  That sucked. SO I started being more ‘compliant’. The dietitian allowed me to be on an 800 calorie meal plan. Then I smuggled laxatives back after a pass home for Christmas. I eventually ‘fessed up to those.

The staff was actually very nice to me. My psychiatrist felt it was important for me to be encouraged to have some sort of fun. My folks were restricted from any visits or contact for a month (later they were evicted from family therapy, as they just couldn’t get into anything past the superficial weight loss).  I was the youngest on the adult unit, and just missed being sent to the adolescent floor for two very simple and ‘lucky’ reasons- I’d turned 18 three months earlier at the U of I, and I was past high school.  Otherwise, I would have been in with the kids who sounded like the poster children for birth control. Oy. Lucky break.  I did manage to go about two weeks with no food after a period of being ‘good enough’ to have less monitoring.  Evidently, the ‘smell’ of starvation was pretty bad, and I was parked in front of the nurses’ station and given toast and juice to get some carbohydrates back into me and perk me up a bit. I was past arguing with them. Bad sign.

At any rate, I was there for  8 months in 1982 and January 1983- when I started nursing school. That’s how it was done back then.  I still had no insight, and wouldn’t until I was several years older, and seeing a therapist after being raped.  I got ‘better enough’ to enroll in nursing school, though I was still on supplements, and my lab work frequently showed  protein deficiencies.  But I was stable ‘enough’.  I was at least acknowledging that there was a problem, and I needed to get it together if I wanted any sort of life at all, and I did.  I wanted to move away from Illinois after graduating from nursing school in 1985.  And I did. Totally unmonitored ‘adult-living’. More treatment, more relapses, more weight fluctuations. BAD relapse in 1995. Equally lousy treatment center in California. I lost 50 pounds in 3 months, and was stunned that anybody noticed a difference in my size. I didn’t.  It took me 3 years of no aftercare, and acting ‘as if’ I was one of my patients at work, when I dealt with food. I got every professional eating disorder treatment textbook I could find.  I made a checklist of ‘exchanges’ of food groups based on a meal plan given to me at the treatment center.  It was a slow process, and I was very alone. Except for the people watching to see if I was losing weight again. (I did, but didn’t realize it until reading journals years later). I’ve done other blog posts about the 1995 relapse- it was bad. It took 3 years to be able to eat lunch with my co-workers. The administrator would comment “it’s nice to see you eat”, which was well-meaning, but I felt like I was eating too much if someone noticed I was eating at all.

My eating disorder moved with me wherever I went. I’ve been extremely fat, and within my weight range (but had lost up to %40 of my body weight). I’ve had every eating disorder except pica (dirt never sounded that tasty). EDNOS is probably the most accurate after 1995, in terms of DSM-V criteria. Or atypical anorexia.  I’ve had periods of semi-normal, but the ‘good’ or ‘bad’ foods still exist. I need to lose weight now for my spine and joints, diabetes, and kidneys. And it’s a struggle.  Leukemia chemo and menopause have made it hard to get back to my pre-cancer weight (I got the ‘fat chemo’ daily for 20 months after 8 days of ‘skinny chemo’- gads, my mouth hurt, and I was too exhausted to even care about eating). The pre-cancer weight was a weight I could live with. Not perfect, but tolerable.  Some may say I’m too old for these issues- but I consider them fortunate for not thinking about weight and  food the way I do.  It’s just a means to an end (living). And after 50 years with it, I’m not sure it will ever  be ‘gone’. If I have a day when something ‘bad’ sounds good, I’ll eat it sometimes- but the internal war is there.

Published by JillinoisRN

A disabled RN who is still trying to find ways to help people. I've got a lot of interests, and a lot of things I'd like to convey to people.... whether they want to 'hear' them remains to be seen :)

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