Writing about Eating Disorders

A few days ago, I was asked for my thoughts on a Young Adult novel that featured the voice of a girl with an eating disorder. I’m not going to comment on that particular book, as the author likes to threaten to sue those who criticise it. Instead, I’m going to write some general thoughts on books featuring characters with eating disorders. 

I have yet to read a book featuring a character with an eating disorder, that wasn’t problematic. They tend to have in depth descriptions of the character’s eating disordered thoughts. These usually involve intense fat-phobia, as well as descriptions of behaviours, calorie counts, low weights, physical features. Reading any one of those can potentially  trigger a person with an eating disorder into relapse. And relapses can be life-threatening. So, this is very dangerous territory. 

Some people say that if you have an eating disorder, you should simply stay away from reading such books. Problem solved. If only it were that easy. Often, someone will not know they have an eating disorder and so feel safe to pick up such a book. In my own case, I wasn’t aware I had one until I was 35. For years, I would get angry and indignant if anyone suggested it might even be a possibility. So, a warning not to read such a book would have had no effect on me. 

Added to that, some people with active eating disorders actively seek out things that will trigger them. This is one reason Pro-Ana material exists. They will read triggering books on purpose, skipping over the ‘lessons learnt’ endings, while reading and re-reading the dangerously triggering material. And so, it doesn’t matter that the book ends well, that the main character learns the error of their ways etc. What matters are the intimate descriptions of eating disordered thoughts and behaviour. 

Another type of book that can be very damaging is the ‘recovery memoir’ type books. The ones where the whole theme of the book is the journey into an eating disorder and back out again. Usually these are written by former sufferers, with the best of intentions. But again, going into any detail at all in describing the eating disordered thoughts and behaviours is damaging. The only exception may be a memoir or biography where the focus is on the life of someone, with the eating disorder needing to be mentioned to give a more complete picture, without it being the sole purpose of the book. An example may be a biography of someone like Amy Winehouse. And again, there needs to be great care taken to avoid vivid descriptions of triggering behaviour. 

There are some books about Eating Disorders that are actually quite useful for sufferers. These are mainly self-help books for those who cannot afford face-to-face therapy. These include workbooks incorporating Cognitive Behaviour Therapy etc. Other useful books are written to help the parents and careers of children, teens and young adults with eating disorders. These generally come with the advice of hiding them from the patients. Again, these tend to be books filled with practical advice, written by psychologists. 

So, if you are a writer with a great idea involving a character with an eating disorder and have decided it will form the basis of a book you’re going to write, I’ve a favour to ask of  you. Please reconsider. 

Rising

When hate comes to town, we rise.

When bullies attack, we rise.

When they want us divided, we rise.

When they try to knock us down, we rise.
They grab our words and twist them. They read intent where there is none, they block their ears and hear only what they want, they take offence when we have principles. They spew forth venom.

But we gather up our allies, we tend to each other’s wounds, we heal. 

And then we rise. 

There is nothing that can stop this rising. 

Too Good To Be True

Yesterday, I had a really bad day. Starting with my body deciding that eating anything at all should be followed by agonising pain. Followed by realising it was Disability Day of Mourning, where those disabled people murdered by their family and carers are honoured and remembered. Add to that a raging storm outside, and my mind became quite stormy too. 

Thoughts of paranoia and worthlessness filled my head. And so I did what I’ve being doing more often: I vomited these thoughts out to the world of Twitter. And folks were more than supportive. I am so very grateful for their kind words. But at that stage I was no longer able to function, so hightailed it to bed. 

Where I tossed and turned and churned on that stormy night. Until I had an epiphany. I knew why this was happenening, and why now.

Over the past few weeks, I’ve been chatting to a whole variety of people, using the Direct Message (DM) function of Twitter. We’ve been chatting about a whole range of things, from the serious to the more frivolous. And I have gained so much from these chats. I have become very fond of these people, so much so that I now call them my friends. 

And so, my brain being the way it is, and having had the experiences it has had, had evidently decided to sabotage my new-found happiness. It whispered the thought ‘this is all too good to be true. Therefore it must not be true.’  It put forward conspiracies of these friends laughing at me behind my back, or even worse, bitching. Memories of my past came flooding back, of ‘friends’ who turned out to be anything but. And the feelings of not being worthy of ever having actual friends, resurfaced. 

And then, the storm cleared. I realised that these new friends are not like the ones of my past. Many are not neurotypical, and so don’t tend to play games and have hidden agendas. They have similar pasts to mine, have been bullied and abused like I was. There is no reason why I should not trust them. And the ones who ARE neurotypical…they are not like the neurotypical bullies of my youth. The fact that they knowingly read the words of, and follow, and interact with, an autistic person, shows that they at least have an open mind. 

And now that I’ve realised these things, the paranoia has abated. Because the simple fact is, some things can be very very good AND true! And I am worthy of having these people in my life, of having ACTUAL friends!

(I have to add that I do have an actual friend in real life, one that I don’t see too often but who has always stood by me and never hurt me in any way. And if she’s reading this, I want her to know that I love her dearly!)
[image of a night sky, filled with stars, with a shooting star streaking across the centre. The sky is graduated, from very dark at the top, gradually getting lighter. The very bottom of the image shows a mountainous skyline, with the land a very dark blue or black colour. There is a hint of a sunset at the border between land and sky, shown by a line of pale pink.]

February Tiger Haul

I can’t believe February is almost over, and I hadn’t made it to my local FlyingTiger shop until now. I’ve been pretty housebound all month but I finally managed to get out on my own yesterday. This month’s haul is a bit boring actually, I went for more practical items than usual. Which I present to you without further delay:
[image shows, clockwise from left: bag of blue and white striped lint rollers for all the dog hair covering my clothes, a blue notebook as I can’t stop buying any candidates for bullet journals that I see, a French nougat chocolate bar, two glue sticks, two erasers, a roll of glitttery silver elastic band just because it’s pretty, four packs of seeds as it’s spring: cornflowers, wild rocket, sweet peas and zinnias, a bag of bag clips for using in the kitchen, two bars of rose soap, a six pack of fake moustaches for DD’s moustache obsession, and two packs of popping candy for fun.]


Ok, maybe some items aren’t as boring as I’d thought! But seriously, who can resist fake moustaches or popping candy? 

Phonecalls while autistic. 

Today I had a bit of a meltdown. To be honest, I’m still in the middle of it. But because writing usually helps calm me down, I’m hoping writing about why it happened may help. It all happened because I need to make a phonecall. 

Yup, a simple phonecall. 

To a government agency. On behalf of my kids. I won’t say more about why I need to make it as I don’t like writing too much about my kids. But I’m afraid it’s one I need to make and it’s not going to go away. 

How I know about it is that I asked a question on a Facebook support group for Ehlers Danlos Syndrome, and was given this phone number. And assured that the person I needed to call would be sympathetic. That they would understand, and that I would receive the help I need. 

The last time I phoned a government official, also seeking help with my kids, also to a ‘lovely’ person who was ‘understanding’ I got ( in my mind maybe, or through a miscommunication) screamed at.  Ok, maybe not screamed. But she definitely raised her voice. 

Maybe that experience has influenced how I’m reacting today. Or maybe if I’d never had that interaction, it wouldn’t have mattered. 

Because phone calls freak me out. Not so much receiving them, though that’s also hard. But making them. Picking up the phone. Especially if it’s important. And especially if it’s someone I’ve never phoned before. 

I can now actually phone to make an order from my local Chinese takeaway (literally behind my house) without breaking out in a sweat. Because we always order the exact same things. And I can order coal. Again, exact same order every month. I know the words to use, I’ve used them before. I have a script. 

But phoning people for the first time, or to discuss something different to usual is so much harder. I do prepare a script. Not written down, but I go over ‘my end of the conversation’, over and over in my mind till I’m sure of what I need to say. The same way I do when I have a face-to-face meeting. 

But it’s so much harder than face to face. I find it hard to understand what people are saying. I’m not hard of hearing, but often need to ask them to repeat themselves. I also apparently have a ‘funny’ accent. I’ve been mistaken for a child pulling a prank. 

But it’s more than that. It’s a weird type of dread that I can’t even explain. 

So, I’m sitting here crying because I can’t make a simple phonecall. 

And wishing more government agencies, more doctors, more school staff, had and responded to emails. Or texts. Or online forms. Or ‘instant chat’. These forms of communication have made my life so much easier when it comes to interacting with customer service from various private companies. Why can’t public services follow suit. 

Why, oh why, are there not more options? 

Feeling a bit better. But still can’t make that damn phonecall. 

Will try again later. 
[image of a black icon depicting a telephone handle, with black concave lines eminating from it to represent sound waves.]

70 of the absolute BEST #ActuallyAutistic blog posts I’ve ever read (300th post)

Reblogging this, not only because one of my posts is mentioned, but also because I’m really looking forward to reading the other 69 posts mentioned!

 

In the very first post on this blog and on my currently-pinned Twitter tweet, I state that “The Silent Wave”, on a grander scale, is not about me; it’s about all of us (especially…

Source: 70 of the absolute BEST #ActuallyAutistic blog posts I’ve ever read (300th post)