Eating and me, an eating disorder on the spectrum

As I sit here in my now too big pajamas, with every part of me aching and drinking black coffee (despite my love of tea) it seems like perhaps rather the right time to write this blog. It’s been the elephant in the room for some time, the thing I couldn’t write about, something I couldn’t share with the few I am close to. Despite having a diagnosis of ‘anorexia’ I can’t bring myself to say it, I can barely bring myself to type it I feel so ashamed. Instead often choosing to describe it to others as ‘difficulties with eating’.

We revert back to the ‘golden ticket’ question again, what was the trigger? Where did it go wrong? As someone in my 30’s I don’t really meet the image of the ‘stereotypical’ anorexic, I’ve not suffered for years and only developed problems over the last 12 months. Sitting alongside the anorexia I also have a diagnosis of Aspergers Sydrome (given in February of this year) due to this I have as long as I can remember been quite particular about food. Whilst watching the hours tick by last night I got to thinking about my relationship with food as a child. We ate a very plain diet at home, my Dad had a sensitivity to smell and rejected anything different or unusual, so my Mum was forced to stick to the same sort of meals on a rotating cycle. I was picky about the way my food was presented, scraping butter off bread and ending up in tears if food ordered wasn’t quite how I imagined it to be. My Dad wouldn’t allow us to eat on our laps in our living room, but our dining room table was often too full of things to eat, so I would have to eat outside the living room door, watching the TV whilst sat on the carpet. I’d often take my food to a neighbors a few doors down if I had argued with my Dad. My Grandparents house was a place to look forward to food – they had moved to Bristol from Yorkshire and believed in having a cooked meal at lunch, which was always a variation on a roast dinner. They laid the table for breakfast, which I loved, the routine of reassurance. I remember I used to go there after school whilst my Mum worked and I would sit with a tray on my lap in the lounge on my own special stool with it’s back to the radiator, with plates of eggy bread, fritters and steaming cups of tea with my Grandmas home baking for pudding. What I wouldn’t give right now to go back to those comforting moments. School was generally more tricky, particularly secondary school as I didn’t like sandwiches and would often leave my lunch if I had gone to the library instead of socialising, I remember my Mum uttering the words ‘if you don’t eat you will end up on a drip’. I had periods of irritable bowl syndrome which made eating difficult, especially when I was pregnant and experiencing morning sickness along side it. I’ve often used food to deal with difficult emotions and crisps/chips have been my turn to of choice when feeling overwhelmed. I’ve never been overweight as I have a fast metabolism and have always loved exercise. I remember having thoughts when I was younger about how ugly I was, I’d take comfort it being slim as it felt like the one thing I had going for me.

To me the trigger doesn’t feel like it lies in my past, the obvious answer was that tons of change happened all at once which resulted in me feeling like I needed to control something. This is the answer the experts probably want to hear, as it’s easiest to fix, the changes have settled, therefore: get well. The change may have been the catalyst, and each time they did settle one by one I changed, got a little better, but keeping the same rigid control over everything. This time I feel like I’ve lost control, it’s become a full blown out obsession or as the diagnostic criteria for autism would like to point out a ‘special interest’. The NAS gives a good description of these here Tracking calories and making sure they are all burnt off is all I can think about, researching what I can eat for the smallest amount of calories is something I constantly do. I don’t dislike food in the slightest, I don’t have the fear which some people have, when I do eat I eat without hesitation. I am constantly cooking for others, an obsession with baking having developed alongside the disorder. I don’t see myself as being attractive thin or fatter, so losing weight isn’t to do with body image. I often feel like I am ‘failing at life’ as despite on the surface (as said by others and certainly not me) I am deemed to be ‘high functioning’ I feel like there are many things I can’t do or need support with, I beat myself up over this every day. Perhaps there’s a perverse sense of achievement in controlling things and watching numbers go down. I don’t know.

Seeking help has felt hard, I’ve denied help with eating for some time, only accepting it when I reached crisis point a month ago. Help in the community isn’t feeling helpful, it feels like there is a set agenda I should fit into and people are frustrated that I don’t fit, why can’t you just comply with us? ‘For us to be able to help you, you need to be accepting of change and ready to make changes.’

There’s a parental feeling in the way I am spoken to, which in turn makes me behave like a child. To get well I have to be able to accept help, but I don’t want to change my interest or lose my obsession as it’s keeping me protected and numb. I am experiencing some quite horrible physical symptoms, but can’t connect that in my mind with change or my obsession. I got to the point this weekend of saying to my mental health team that I felt I had lost control and didn’t know what to do – my compulsion to exercise despite feeling so sick was overwhelming, a punishment for engaging with help. I was told that I am still able to make decisions, so things would be left as they are for now. There is the offer of future inpatient support on a voluntary basis, but my rigidity to change and terror of being in a place where I can’t stick to my daily routines all feels too much. Each night I stay awake with the light on, partially due to insomnia and partly due to fearing I might go into medical crisis and disappear in the night. I have protective factors which I suppose are the few things which keep me asking for help when things hit crisis point, I wish with all my heart that they were enough to make my mind comply. I’d be interested to hear the thoughts of anyone who has been through something similar.