Tag Archive: A Patient’s Perspective


Despite almost never writing these days, I am still here and I still have the DESIRE to write, just not the accompanying drive to action. However, I find myself here with minutes to spare and the determination to put something down.

Because it’s important.

To be fair, I know I’m over reacting, which, naturally, doubles my irritation, but it would seem that I’m not beyond being stung by a throwaway comment. Damn.

I’m angry and frustrated with myself. Even more so because I should be better… and bigger… and past it… and all those things that I expect of myself. Obviously, I am not as immune or as desensitised (read: ‘protected’) as I think.

I spent a lovely weekend with old friends. It’s the first time I’ve made a reunion in a long time, and I’m so glad I went. Earlier, I was showing my youngest sister some photos and happily telling her about it, until she asked if everyone had been understanding of my… condition. Well. They were, yes.

I mean, my old friends from way back. They knew me pre illness. They know me. They love me.

Just one teeny statement though, managed to blow a hole in my surface.

“It is a choice. Anorexia IS a choice”

No it’s not.

“It is”

What do you say?

Even a few minutes walking round some rock pools don’t elicit any responses. An unexpected shot. And yeah… I have to admit, I was a little wounded.

So this is my belated response.

I’ll tell you what’s really weird… and not to be written lightly… When someone suffers with Anorexia, it can be so acute, and so very life changing, that it appears odd that it remains something ‘in the abstract’. For example, despite the knowledge that Anorexia is a MENTAL illness, if a radiologist did a brain scan, a patient with an eating disorder (and maybe their loved ones) might almost expect to see large shadows obliterating whole sections of their brain. (Nowadays of course, neuroscience and improving technology seem to be making it possible to identify all sorts of quirks and trends in the structure of the brain). But for most of us who battle this dominant demon of hunger, it remains an imagined shadow, or a toxic spillage seeping into hidden cranial cavities. Of course it won’t show up on a scan. It’s too deadly for that.

I KNOW it’s different. I know it can be a temporary coping mechanism for some, and yes it can be something of a cry to be heard, or even a teenage tantrum for a minority, but for many of us, Anorexia is as impossible to CHOSE as meningitis is to contract. You just wouldn’t think to announce to someone with brain cancer that their illness is a choice. I KNOW it’s “not the same… yade dade yada…” but I’m telling you, this thing that plagues me… this THING that has destroyed a whole decade of my life, isn’t a matter of choice. It’s an illness. As present and as torturously painful as anything physical.

Eating disorders can’t just be selected and applied. They begin so small that they’re invisible; and by the time they’re making changes to your body, they’re bedded down hard.

Choice DOES come into it. But not there.

I’ll tell you where next time.

In the meantime, telling your sick friend that they chose their illness, is as helpful as a kick in the teeth.

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I’m PAINFULLY aware of the gaping abyss that lies between this post and my last. I have been having huge problems concentrating my efforts on doing any ‘personal’ writing, and the little time that I HAVE been able to focus, has been spent doing the writing that is a necessary component of a course I’m doing.

Yes. You did hear that right. A course.

I’ve now been out of hospital since the 1st of August 2017. That’s almost a whole six months. A fact that, in itself, isn’t joyously impressive. What does make it count for a little more, is the fact that I actually managed the Christmas period without OVER compensating and reigning my calorific intake in so much that I end up with less nutrition on my plate than you’d find in one of those little, green caterpillars that I used to love when I was a small child. Moreover, my weight (a fortnight ago) is pretty much the same as it was when I left The Priory.

Before I crack open a bottle, I have to admit that I was still considerably underweight when I discharged myself from the hospital, AND, my diet has been less than ‘healthy’. I won’t go into that right now, suffice to say that I still have so far to go if I am to continue this uncertain path of something like recovery.

When I came out of hospital I began to give serious consideration to my situation. A situation that left rather a lot to be desired (and yep, that is in the literal sense).

I took stock.

I’m 40.

I’ve lost my teaching career. I live back at home. I don’t have a relationship. I have no children. I probably won’t ever have that as this illness destroys all kinds of natural processes, and the body is clever enough to redirect all its resources away from ‘unnecessary’ things like reproduction, the usual hormonal changes, skin and bone health, whatever… just in order to keep your heart beating.

Stradivarius eat your heart out, right?

Right.

Seriously. This is not a great situation. But then Anorexia will do that to you.

Anorexia will take all you’ve ever valued, all you’ve worked for, ached for, bled, sweated and cried for… Worse, it’ll take all that COULD BE, and it’ll rub away, like an eraser on the same piece of paper, until it finally destroys all your could haves and all your would be’s.

That’s why, I came up with PIE.

A simple recipe for something that might look like a life..

It’s hard going, and I’m writing now because it’s all about to get harder (I think). But that’s why I need to keep reminding myself (and any other ED sufferers) that whatever battle lies ahead, it just CAN’T be as bad as the constant torture of Anorexia. The torment of eating a little more CAN’T match the constant turmoil of bargaining with the illness, running though sum after sum, compromising with the darkness, allowing it to deny us TIME and TIME again. (I’m writing this praying it’s true). The opaque sense of flimsy truth is so hard to FEEL, and yet it’s all I have if the next six months is to look different again. That’s why I’m going to carry on reversing the pattern, adding to my plate, painfully bending the bars of the cage I’m in.

That’s enough on the matter for now. This is already so much longer than I intended it to be.

The pie will keep.

It was clear from an early age that I wasn’t ever going to make a scientist. Certainly, the most memorable things from my physics lessons involved throwing wet paper towels at each other, and the time when I fell off my stool because Leon Kavanagh pushed me too hard.

It’s really Mr Thomas that I blame for my ignorance on the topic of magnetic force. He had bad breath and liked to lean over your shoulder to illustrate his point. Awful as it is to conform to the stereotype of the bored teenager, surely it’s even more awful to conform to that of the fairly greasy, and very definitely sleazy, Physics teacher!  All this to excuse myself for what follows; a very unscientific reference to a very scientific process.

It’s possible that if you belong to a certain generation, you’ll have had one of those arched magnets lying around the garage. You know the ones… a U – shaped piece of metal coated, in part, with bright red plastic.bare magnet

I loved ours. My dad’s. As a kid, I’d be content to mess about with it, trying to get to that point where I could move the screws / nails without the magnet actually picking them up. You know THAT point? What was it that was SO satisfying about THAT point?!

Anyway. The magnet is something I often refer to when I’m attempting to explain something about the nature of Anorexia and, moreover, the PURPOSE that it serves. Because it does HAVE a purpose. And just because there may be no apparent reason why a person is dogged with this illness, doesn’t mean that it’s a completely random occurrence.

Although I am writing mainly about Anorexia Nervosa, sufferers with other eating disorders will identify with the fact that before they even had a hint of their illness, they were chronically anxious. In my own experience, I had suffered with almost crippling anxiety and panic attacks for many years before Anorexia hijacked my brain. I have heard so many other patients refer to their inability to manage everyday anxieties, stories of phobias, extreme panic, fear.

Whether it was recognised in childhood or not, I would hazard a guess that it is actually an anxiety disorder, generalised or specific, that underpins Anorexia.

And so, a sort of Anorexic blueprint, is born.

The child who is very frightened about being left alone to survive in the playground; the one who studies to be the best and so is the best and then lives in fear of not being able to keep being the best; the person at work who is held up as being exemplary, and is terrified of being ‘found out’ because he or she has no self belief and feels like a fraud. Anxiety. Anxiety. Anxiety.

You may be reading this and identifying the fact that this is something we ALL experience. Perhaps it is… but everybody manages their fears in different ways, and Anorexia, whilst still being a severe and enduring illness, often begins as a means for managing fear.

Imagine a tabletop covered in iron filings. Horrible little bits of grey, scattered all over  Try to scoop them up and they go everywhere…

Now imagine that each of the filings is a different ‘free floating’ fear.iron_filings copy

So many different things to cope with, too many. It’s all very out of control and you can’t rest because you’re in a constant state of hyper alertness; a state where heightened anxiety is natural because everything, EVERYTHING feels like a bit like a threat… a challenge… The filings don’t shift, if anything, they seem to multiply.

Anorexia is a magnet.

And it’s bigger than anyfilings drawn to magnetthing else.

And it’s really powerful.

Due to a force that I should at least have some understanding of (but don’t because I didn’t bother in my Physics lessons) the filings are immediately drawn to it as it hovers over the tabletop, sucking up every little shred of metal.

It’s what Anorexia does. All the individual anxieties stick to it…. fuse with it… until, one day, they don’t really exist any more and all that’s left is the illness. One giant entity. One focus. One fear.

That of never being able to be thin enough.

Simple?

Yeah. About as simple as physics.

The hardest thing is the terrible realisation that you’re not holding the magnet any more and that it, in itself, is far, FAR stronger than you; As if somehow, cruelly, the incorporation of all those little grey shards, has strengthened the force that then turns on the sufferer him/herself and begins to diminish them.