Just different

I have had a rubbish couple of days, but I was expecting that. I feel really sad. I’m not sure if it’s the trauma work I’ve been doing in therapy or hormones. Probably a combination. PMS feels like a much briefer version of what happened to me in hospital – I get hyperactive, anxious and can’t sleep for a couple of days and then I start feeling really low and wanting to cry all the time. Good times.

Anyway. In another ED Bites inspired post, I wanted to write about what some people are beginning to call ‘non-fat phobic anorexia’. This isn’t just one of those terms bandied around by the media such as the ridiculous examples of tanorexia, manorexia, drunkorexia, and anything-else-vaguely-self-destructive-orexia. Non-fat phobic anorexia is being considered for inclusion in the new revision of the DSM. Studies have found wildly varying rates of sufferers who fall into this category, from 59% in a study of Chinese patients in the 1980s to 17% of Canadian patients more recently in 2002. Basically, anorexics are termed non-fat phobic if they are missing the second point from the current DSM criteria: having an intense fear of becoming fat.

The DSM criteria for anorexia come in for a lot of criticism. Some people think that the condition of ‘refusal to maintain a weight 85% of normal expected body weight’ should be removed. If someone who is significantly overweight loses to a healthy weight quickly through eating disordered behaviours they could be extremely ill far before the 85% mark. There’s always a debate about what constitutes a healthy weight as well. There are clinics which state that 100% ideal body weight is a BMI of 22.5, and diagnose people as anorexic at 85% of that, which is just over a BMI of 19. Some doctors will call people weight restored at a BMI of 18.5, when others argue that was made the lower healthy limit so that Asian women could be included in the BMI charts and that 18.5 is too low for Western adults. And many people think that BMI is a load of rubbish and other factors such as blood pressure, blood test results and hormone function should be used over weight. But the criteria about amenorrhea often comes under fire as well because some people never lose their periods even at critically low weights, whereas others lose theirs before their weight even drops out of the healthy range. I have read arguments on both sides of the argument for these criteria and wouldn’t presume to get my butt off the fence because I’m not a doctor, but I AM interested in the discussion around the issues of body dysmorphia.

I fell into the non-fat phobic category. I am not going to make any suggestions about whether it is easier or harder to recover from either form of the disorder, because the issues are different, not really comparable. I was terrified of gaining weight, but not because of anything related to body image. My main reason, as I’ve said before, was that I was convinced that my depression and anxiety became unmanageable every time I was at a healthy weight, and that starving myself protected me by keeping me numb and providing an all-consuming distraction. I think at my lowest weight I did lose touch with how I looked to other people, but that was mostly because I never looked in the mirror or even down at my body more than I could help – until I started trying to recover I avoided anything that might show me what a mess I was in, because I didn’t want to be jolted out of my little parallel universe. And in recovery, I have never felt like other people must be thinking how huge I am or regarding my weight restored body with self loathing. I have gained almost 35lbs and I don’t really have a problem with that. I get a little bit freaked out about the size of various parts of my body occasionally but I can step out of that anxiety easily and it’s usually only when I am tired or stressed out about something else. I think of myself as far more attractive at a BMI of just under 20 than I was at just under 14. And I always thought I was a complete freak for being like this.

As if it wasn’t isolating enough that I had anorexia and other mental health problems and so felt apart from ‘normal’ people, I was also phobic of being sick whilst surrounded (online) by purging anorexics and didn’t even relate to the one thing that the general public thinks typifies anorexia, and what seemed to be the main fear among most of my (ED’d) friends. Every presentation of an eating disorder is different, there are probably as many different behaviours and triggers as there are sufferers, and it’s also very common to feel completely alone even if you know a lot of other people with the same illness. But the fact that I was trying to lose weight whilst not believing for a second that I was overweight or attractive at lower weights confused the hell out of me.

From what I’ve read since I’ve been putting all my efforts into recovery, I am convinced by the idea that anorexia is a biological illness. Research suggests that 60-80% of risk for developing anorexia is genetic, which is comparable to the percentages for bipolar disorder and schizophrenia. It doesn’t matter if you have no immediate family members with the disorder because there’s not likely to be one gene, it will probably turn out to be a combination of many in conjunction with environmental triggers. Malnutrition alone can cause many of the symptoms of anorexia, even in previously healthy people, which explains why so many of my relapses were triggered by accidental weight loss after illness or stress. At a certain point, eating disorders become self-perpetuating, because whatever the original trigger the disorder changes your brain chemistry and function and locks you into a pattern of behaviours that you just cannot seem to break. I always felt like it was very similar to my OCD rituals – for example, I knew logically that I would not die if I didn’t arrange the shampoo bottles in the shower into a specific pattern, but I kept doing it because not doing so scared me. There was no hidden meaning behind the ritual, it was more like my brain was acting like a broken record stuck on a loop.

My anorexia was similar. Eating more than my current safe number of calories was just not an option – I was so petrified by the thought that there was no willpower required. The number of calories I chose was not linked to a diet plan or my BMR, it was just an arbitary number that was a bit lower than last week’s. My anorexic target weights had nothing to do with what I thought my body would look like there, they just seemed somehow magically safe and neat. Getting up and seeing a lower number than yesterday made me feel safe. Seeing a higher number terrified me – not because I felt like I was getting fat and that everyone would be able to see the extra half a pound, but as if my life depended on my weighing less every day. The idea of being at a healthy weight panicked me because I was certain that I would go crazy without the numbing effect of both my physical state and my behaviours. In fact, my mood did become far more difficult to manage as I gained weight, but the thing I forgot was that anorexia didn’t make me stable, it just made me numb. I’ve also found that if I ride out low moods and anxiety attacks without panicking that they might be the start of a new slide into depression and using unhealthy ways of distracting myself, they do pass. Sometimes they take days, occasionally they take weeks, but I do return to equilibrium eventually.

I don’t think I ever gave myself enough time at a healthy weight before freaking out and losing weight. You cannot use a month or two of weight restoration as proof of your inability to cope at a healthy weight, because it can take a year or more after physical recovery for hormone levels and brain chemistry to return to something approaching your natural baseline. I conveniently didn’t even consider this idea until this year, I was too blinded by panic that I would end up in a suicidal mess at the local psychiatric hospital again. I may become seriously depressed again anyway, but at least now I don’t believe that anorexia is an effective way of dealing with this.

When I was ill I never really wanted to unpick this, because I didn’t want to think about the prospect that there was nothing remotely logical about my thought processes – although I was quite happy to talk about the reasons I was anorexic because they seemed very sensible to me at the time. But since I’ve been blogging I’ve found others who talk about the same issues as I do. It’s still anorexia, it’s still dangerous and it’s still ridiculously difficult to recover, because the fear of gaining weight is just as strong whether you feel like it’s driven by body dysmorphia or more OCD-like processes. And it might initially seem like a pointless philosophical distinction, but it does impact on treatment as well. Most eating disorder treatment programmes include body image therapy, assertiveness training and confidence building, attempts to change faulty beliefs about how the world perceives you. When your eating disorder is driven not by self hate but by a deep (if misguided) belief that it protects you, these may not help so much. I didn’t need to learn to love myself or to stand up for myself because I had pretty good self esteem, and I didn’t need to retrain my warped body image because I could see what I looked like and it wasn’t fat. I would have benefited from realising that a significant minority of people with eating disorders had the same fears driving their behaviours as I did, and from someone attempting to reframe THOSE thoughts, rather than just presumptively saying (as the psychiatrist who referred me back to the local EDU in February did) ‘so, you are not eating because you are terrified of being fat, yes?’. I thought that because I could see my body as it really was, my own reasons for being terrified of recovery were somehow more valid – because everyone knows that anorexics are mistaken in thinking they are fat, but the literature also agrees that malnutrition numbs emotions. It turned out that my thought processes were just as faulty and warped, but in completely different ways.

I’m not attempting to compare the severity or horror of the experiences of various subtypes of eating disorders because different just means different. But if the DSM were changed this time around, I would be very interested in the implications for treatment. I hope researchers begin to study the neurological differences in the brains of people with body dysmorphic vs non-fat phobic anorexia. Deeper knowledge and understanding and more specialised treatment could only be a good thing.

It’s 10pm now and I have to get up at 6am to get my parents from the airport, so I think I will stop rambling on there 😛

Three good things about today:
1. Yesterday, Aisha posted a recipe for vegan macaroni cheese that doesn’t require nutritional yeast or soya – guess what I’m making for dinner tomorrow!
2. I felt rubbish today so gave up on studying after an hour and watched, in order, Scrubs, Scrubs, Buffy, Lie To Me, Friends and more Friends. Is being grateful for Sky TV really sad of me?!
3. I feel like I’m getting somewhere with this trauma stuff at last. It’s very strange and not much fun but considering the opposite, it definitely counts as a good thing.

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7 responses to “Just different

  1. My eyes are failing me right now but I have to comment because this is such a hot topic for me. I was diagnosed as being anorexic purely on the basis of weight and fear of fatness, despite displaying more features associated with binge eating disorders alternating with periods of starvation. But the binges were ignored because obviously someone in the sub-15 BMIs can’t possibly ever have a problem with over-eating…those fears and obsessions were ignored by every mental health team that I saw, partially contributing to the mess I’m in now.

    I think that people need to be treated on a far more individual basis rather than being stuck under umbrella diagnoses ~ so much more research needs to be done into the topic and sub-criteria would certainly be helpful. Your experiences illustrate the vast complexity of such disorders and I think the powers that be would do well to consult lucid, insightful recoverees such as yourself when they’re making changes to or considering improving treatment options.

    I must have missed you on MSN earlier 😦 Unfortunately I just posted and went for an epic length of a cry but thank you for your comment back to me…I wish I could have been around to talk more and not been so selfish in wallowing in my own problems. I admire the way you have coped with your trauma more than you can know and I read back over your last few posts to inspire me to pick myself up and try to get over/through this. My supplements do contain 200% RDA of vitamin D so my calcium issues remain a mystery (aside from the non-existent oestrogen thing but there’s not a lot I can do about that aside from loaning ovaries from someone…sorry, that’s definitely TMI!)

    I also noticed Aisha’s recipe for vegan Mac & Cheese. I think it’s definitely one I should try too as it was always a favourite of mine…

    Thank you so much again for all of your help and support. I really don’t know where I would be without you.

    xoxox

  2. The criteria for diagnosis always irritated me. I think they will continue to irritate me whether or not they are modified, because I feel like they just serve a purpose for insurance companies. I mean, really — someone is not well. It needs to be fixed. Why does it really matter what name you attach to the problem?! That said, I think they ought to change it so that someone can be diagnosed as [whatever disorder] if they exhibit, say, three out of the following five symptoms. I don’t know why I think that, but I just do!

    Your parents had a pretty quick trip, didn’t they?!

    ❤ ❤

  3. This is so interesting to me because I feel like I go back and forth between non-fat phobic and fat-phobic. There were times when I felt disturbingly fat even at a very low weight and certainly some of my restricting was tied to that. But there was also that idea that I would be “safe” if I was at some magical weight or consumed some magical number of calories. It wasn’t so much that I was afraid that I would become fat if I went over these targets; it was more that I was afraid something terrible would happen if I did.

    And the diagnostic criteria really do bother me also. They just seem so meaningless and also a way to discriminate for insurance companies (i.e. if you can’t meet all these criteria, you must not really have a disorder that needs treating–sorry).

  4. Sigh, my PMS symptoms are A LOT like yours. I feel for you!

    I hadn’t heard of non-fat phobic anorexia before, but I certainly fit that. I never thought, “I want to lose weight”; I just thought, “I need to count all these calories and they should be between 1500-2000/day because that’s what they say women should eat.” Of course, that’s restriction for me. And I liked to play the “how low can I go?” game, more as a self-punishing challenge than a weight loss gig. That’s how it all started for me, essentially. Thanks for talking about this!

  5. laurasworthlesswords

    This was really fascinating, I always like to read scientific stuff and other peoples experiences with eating disorders. I think my interest is mainly because I have always been rather confused as to why I got an ed and why I am still chosing to have one, for me the same applied I didnt start off on a diet thinking I was fat and need to lose weight it all just happened. I lost the weight, got even more depressed, got more obsessive about things and got stuck there! I have found that with putting on more weight though some of these thoughts and obessions have eased off, I did little things like having to do things in certain numbers etc for no real reason and the numbers didnt have any particular meaning either.

    I found that even though I didnt set out to lose weight the thought of regaining the weight was terrifying, why? I still dont know.

    Its very interesting to read your experiences and others and see how similar they all are. Even though eveyone has their own stories and journey they are all very similar in terms of behaviour etc. Its a tricky subject but I do agree the guidelines for anorexia arent great because of factors such as you can be totally disordered but not necessarily bone thin, you can still have your period at a low weight etc.

    Ahh your tv list sounded great :-), even though friends has been on tv for years and repeating so many times I still love it.

  6. Pingback: That’s what she said « I Have Issues

  7. I found you from Abby’s blog. I am probably the only non-anorexic to comment but my reality is this: I was 230 pounds, I lost about 100 pounds (I’m 5’6.5″) and people said I was too thin. No where NEAR anorexic in BMI, and I know that I was never, ever underweight But, I did lose my period after about 85 pounds and I was restricting my intake and being quite obsessed with saving every calorie I could to get leaner. I have since gained back about 5-10 pounds (it cycles) and I’m no where near as restrictive. However, when people make noises like I was anorexic, I feel like screaming at them “REALLY!?! I obviously was never very good at it!!”. Anyway, thank you for making me aware of this- it actually sheds a bit of light for me.

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