Tuesday, 23 September 2008

Part #10. To Be or Not To Be...

I've edited and re-edited this post so many times today in the hope that I can get these jumbled thoughts into some form of coherent message, but I'm not certain that I have succeeded. Parts of this post are dreadful - 'sphincter-winkingly bad' (*cheers* Linda!) - but I hope that sections will not be misconstrued and taken out of context.

There was mention made in one of the comments on yesterday's post that an ED is a choice. It is a choice to take laxatives; a choice to purge and vomit; a choice to starve oneself; and a choice to scale-hop. Logically, of course these are 'choices'. But where is the logic in an ED? The name gives it away immediately - 'disorder', the definition of which is: lack of order or regular arrangement; confusion.

I feel a great amount of confusion with anorexia. I have crumbled over the last six months whilst suffering with this episode, going from an extremely capable woman with a senior management position, running a household and caring for two daughters and a husband, to a woman who simply cannot think straight where food is concerned with a self-destructive streak. My house is still spotless, the girls enjoy an excellent relationship with me and Ian, and we are all, still, able to have many times of laughter, leg-pulling, conversation, and contentment. (I almost feel as though I am having to justify myself here, even though I don't!)...

There are an estimated 1.15 million men and women suffering with an ED in the United Kingdom for which there is very little healthcare funding. I feel fairly sure that if they were told they had the choice to have or not have an ED, most of them would say "I'll choose to go without, please..." I certainly know I would. To insinuate that an ED is a choice is becoming more and more of a laughable statement to me. It is also a condescending statement. An ED is a form of mental health problem - as are schizophrenia, post-natal depression, bi-polar disorder, OCD. Are they life-style choices, too? Can we pick them out of a glossy catalogue and say, "Ooh, Gosh! I think I'll have...hmmm...THAT one!"

I do, however, believe it is a choice to fight it, though. Just admitting it is one of the boldest steps a sufferer takes. Many people are in denial about it - hence the 'estimated' figures - and a spiral of deceit sets in which is harder to work with and support than anyone who has started the fight and held their hands up and said, "Help me. Please." As soon as there is an admission, tactics, loving support, therapy and even medication can be introduced. It can be a long, slow process for some people - an ED has often been described as the sufferer's 'Friend' - it's something they feel they can always rely on where everything/everyone else has let them down. Obviously, it isn't a 'Friend' - it's most definitely 'The Enemy'. But it's been reliably inimical. And that's exactly why it isn't simple enough to just say: it's your choice.

I have no right to say either my ex or my family forced me into my anorexia and bulimia - they didn't force-feed me laxatives or stick my fingers down my throat or even starve me. But their treatment and neglect of me left me feeling so isolated, rejected and lonely, that I often felt physically sick inside. When a person feels sick, they don't want to eat. And sooner or later, weight does start to come off. And often, a person can get compliments. Where they have been feeling rejection, suddenly, somebody has said something which makes them feel nice - they've been noticed and received a remark of positivity rather than condemnation. It is always great to be complimented.

How many times have you said to someone, 'You look great - you've lost a bit of weight, haven't you?' And they'll have been chuffed, no doubt - particularly if they are actually on a diet. Perhaps someone has also told you, 'Gosh, you look well - you've lost weight', and I bet you've felt good for the day...

So, that's going tickety-boo for a while. But it is the 'disorder' (and I believe that word actually applies more to the disordered thinking squatting in the mind of a sufferer) which makes one believe - 'OK, if I lose a bit more, maybe people will notice me more, think more of me, like me more...' And this is where ignorance can kick in and people think - God, that's sooo vain; so an ED is just about vanity? And I really don't want this taking out of context and distorting...

Many ED sufferers have a common theme - they have felt rejection, abandonment, pain, neglect or abuse throughout their lives from some place or person. And that is not a generalisation - that is a hard fact. I would never have dreamed that anorexia and bulimia would befall me. I didn't even know what bulimia really was until it happened to me. I had no idea it had a name. It was my ex who told me later what it was - it transpired that his ex-fiancée had also suffered with it. She broke their wedding off weeks before it was to take place by telling him she could never marry the most selfish man she had ever met...

'Control'. This is another word very often used in connection with an ED. I rarely felt as though I was in control of things. I was rarely allowed to assert myself - if I did, I was punished severely. The one time I stood up to my mother, as a 21-year old, my father grabbed me by the throat and gave me a whallop right across the face. But I was able to control what I ate, when I ate, how much I ate and if to eat at all. And having, for the first time, that opportunity to control something was a power in which I revelled. I had power, for once in my life. I could finally take charge of things. And it was addictive.

But there is a fine-line, I do know that. And it is like throwing a stone into a pond and watching the concentric ripples spreading out from that one sploosh. If your brain isn't being fed, and your organs aren't receiving nutrition, the disordered thinking takes a hold. The subconscious mind starts to feed the conscious mind instead. And all those negative feelings start living rent-free in your head. And because they get louder and louder, with each day that passes, you crave more and more control - those feelings drown out the voice of reason and no matter how much you tell yourself, Just Don't Bloody Do It! you do! You succumb. Because they, at the time, have the control...And as soon as they have won, you can relax. They are quiet for a while. Until the next time...

I have a great many feelings about my ED. I feel self-loathing; disgust; shame; embarrassment; sorrow; pain and weariness. But I have never felt pride or guilt. Pride, because what on earth is there to be proud of? What part of an ED makes you feel proud of what you are doing? And guilt? I didn't 'choose' this. I really didn't. Just like Princess Diana didn't 'choose' her bulimia; just like Lena Zavaroni, Karen Carpenter, and eminent academic Rosemary Pope didn't choose to die from their own EDs. (And please may I suggest any dissenters read the link to Rosemary)

Research is currently under way to attempt to ascertain if malfunctioning DNA plays a part in a person's susceptibility to succumb to an ED. For many years, homosexuality was deemed a 'choice' - it has now been proven, scientifically, that it isn't. And how many gay men and women were ostracised, criticised and 'purged' from the planet for just being how God created them?

I do feel guilty for causing my family pain without wanting to. But I don't feel guilty for having an ED. If I could clear this from my system once and for all, I would do it. Right now. But it's not that easy. Anyone who says recovery from any form of mental health illness is easy is simply ignorant and arrogant.

And to those people who advocate that Ian leaves me forthwith, let me put this question to you. If you had a child who succumbed to an ED in his/her teens, would you abandon them?


Karen ^..^ said...

This was so beautifully stated it brought tears to my eyes. You are so intelligent, and so compassionate. What you are doing here will help so many.

I have to publicly apologize for getting so upset in your comments yesterday, as I suppose I was no better than the people I was blasting. Basically I was trying to say this very thing, but was pretty incoherent, and let my emotions run away with me. You said it so beautifully, without insulting anyone, and in a way that makes so much perfect sense.

I was so happy to see your post today. I was worried we wouldn't see one for a while.

I promise not to use foul language toward any commenters. I cannot, however, promise I won't describe anal in a vulgar and profane manner.

Rock on, Annie. You're doing beautifully.

Agnes Mildew said...

Aww, sweetheart. Everything you said yesterday was said out of care and consideration. And we know that. You're a wonderful, beautiful woman who cares so very much about other people - it exudes from you. Julian is a very, very lucky bloke to have you, you know - and I hope you show him this!!

And you don't need to apologise to anybody. Only those who troll, in order to upset, abuse and hurt should be doing that - but they have to live with their own conscience.

I must be honest and say that I did wonder if there was much point to continuing, and did actually debate whether to delete the whole blog last night...

Thankfully Ian stopped me.

Laughably, when Ian put up this new instruction about posting, I said, Oooer, bloody hell! Karen won't be able to post if foul language isn't allowed! We laughed - but NOT cruelly!

You're a pearler! Thanks for your continued support and love...and today hasn't been as bad as I thought it might be...

Karen ^..^ said...

Well, you did notice that I put my disclaimer in there... And I'll stick by it. No foul language toward commenters, but plenty otherwise. LOL (just kidding)


Thanks Annie, you are a wonderful friend. You and Ian both.

Charles Parsnip said...

Brilliant piece of writing there Annie.

I'll be honest, I think this is one of the best descriptions of how an ED "works" that I've read.

The paragraphs that deal with choosing to fight, and asking for help are especially important in my mind. Yes, it is frustrating when the health services cannot/will not help, and those supporting someone with an ED might find it hard to actually help, but understanding what you're up against is a good place to begin. This post should help to explain that.

thewishfulwriter said...

Anorexia is not a choice.

Being rude, uninformed and hateful, however, IS a choice.

I'm sorry you had a rough day with comments yesterday.

I'm glad you decided not to delete this blog. If ever you decide to, it should be for your own reasons, not because someone bullied you into it. Kudos for sticking up for yourself and your fight against this disease.

You rock my socks.

Mars said...

i noticed a more detailed definition on 'trolls'.

this was beautifully written. and i have a sense that you really are moving forward and getting closer to getting rid of it.


Agnes Mildew said...

Karen: The feelings are mutual. Love to you and Julian, truly.

Ian: Thanks. Thanks for giving me your honest opinion before I posted this. Thanks for allowing me to be brutally honest with you today. And thanks for your continued support and trust. It is greatly appreciated. As you said today, nobody knows the love which we share, and thus nobody has the right to comment upon it. Just as we would never comment on another person's. We are strong and we will succeed in this fight together. As long as we keep communicating and keep on loving. Thank you, my darling man. X

Heather: Thanks for your words of wisdom. And I agree with all you say. I am now glad that I didn't allow the trolls to beat me. Ian asked me today if I regretted the non-deletion, and I was able to say, categorically, NO. I was very uncomfortable about writing further, but then I mustered my courage and moxie and thought, Bugger Them. This is MY journey. If they don't like it, let them read Humour blogs...perhaps they might like to read Hex My Ex? - Hahaha!

My socks get rocked by you, too. And I need my socks at the moment, 'cos it is bitter here!

Mars: Lovely words from you. Thanks. You're a kind girl. And you deserve great happiness. Some of your own blog posts make me feel very, very sad. Be happy. You have us, as your friends, lass xx

Linda and her Twaddle said...

In 2005 when I lost weight and was very, very thin I could not help but notice the incredible amount of wonderful attention I got. It was as though I had discovered the cure for cancer or something. At the time I was ill and also learning to be off anti-depressants and all the positive feedback that came from my being thin was almost addictive. Sadly, it seemed to validate me, as thought being thin meant I was surely a better person. It was very troubling for me as I could feel those old bad, bad food habits creeping in and it took a great deal of resolve to keep it under control. I have never employed so much cognitive behaviour in my life. It is fine now, but still, when I am under personal stress that I feel I cannot control, my immediate reaction is food restriction and increased exercise. It helps me feel in more control. I feel safe once I drop a few kilos. Brings me back to a more peaceful place and then I feel I can face things a bit better. Certainly the fact I am totally aware of it and admit it to myself does make a difference. Stops me being totally absorbed by it I suppose. But I still count calories ALL THE TIME.

So, Annie, reading what you have written brings to mind the truth of it all. It is so important to give a child tools to cope in life, nurture them and value them. It is so hard, as an adult, to have to build a new set of coping skills to get you through just normal day to day stuff.

It is not just about being thin. It is not about vanity. It just is so much more complicated than that. You have really articulated it well.

Lexy said...

I agree that whether an ED is a matter of choice or not is a subject of much debate in all circles, and you are, clearly, entitled to your beliefs on it.

And disordered thinking... there's certainly no debate there, especially as I myself suffer from Borderline Personality Disorder.

So how then do you fight an eating disorder?

And you saying that recovery is a matter of choice, and that you are fighting for it, begs the question... What are you doing to get there? What choices are you making?

Do I need to add the disclaimer that I'm not attacking you? That I'm not questioning you or your intent? Just that I'm merely asking a question from an 'outsiders' point of few? If so, consider me disclaimed.

Annie T - ex Agnes Mildew said...

Linda: Thanks for your comments and thoughts. I was able to relate to what you said very well - it has, indeed, provoked so much thought that I can feel a new post coming on!

Lexy: I certainly do not believe you to be attacking me, so no problems there. I believe you ARE trying to make me think, and I always welcome that.

I didn't know what Borderline Personality Disorder was, so I read an article about it. It appears to share many similarities with the thought processes of an ED from what I read.
How am I fighting my ED? With small steps. Like weaning myself off laxatives - slowly, slowly. No point stopping immediately: I could do myself more harm than good. Making home-made veg soups and attempting small bowls. Researching counsellors and trying to get some form of Cognitive Therapy (which isn't that easy around here, unfortunately) and writing. I think Linda made an extremely valid point in her comment, and I am not attempting to pass the buck by referring you to it, but here it is:

It is so important to give a child tools to cope in life, nurture them and value them. It is so hard, as an adult, to have to build a new set of coping skills to get you through just normal day to day stuff.

So, I am attempting to build new coping skills. But poor coping strategies which have been learned over 38 years will not vanish overnight and it does take time.

But like your own 'disorder', experts are now starting to believe that there are genuine genetic issues at stake as well as 'brain abnormalities' (their words, not mine) and thus, if this is the case, one can try their damnedest, and it might always just end up being an uneasy compromise. I don't know. I am not a doctor or a specialist and I certainly don't claim to have any answers or advice as yet.

But thank you for taking the time to re-visit and comment.

ann said...

Annie, I have been reading your blog with a great deal of sadness. My 18 yr. old daughter has been struggling for 3 yrs with bulimia/anorexia. She has been inpatient in a wonderful facility twice. She is currently trying to finish her final year of high school and living at home with me. I try to support her in anyway I can but it is ultimately her battle to fight. I am very proud of her because she is fighting for herself. I know how difficult this is for her but she is still fighting. She sees her therapist twice per week. She also periodically sees a nutritionist and her medical dr. She is still struggling with ED in a lot of ways-but is not giving up.

I am not trying to offend you in any way but are you FIGHTING for yourself and your family? I don't believe for a moment that you can do this on your own. ED is too powerful and consuming. It seems like you have very serious health consequences from ED and I just encourage you to take steps towards recovery. I am sure writing this is helpful-but I just feel you need to do more and very soon.

Please know I wish you and your family the very best. Ann

Annie T - ex Agnes Mildew said...

Ann: Thank you for taking the time to comment. I am sorry to hear about your daughter and I hope that she makes great steps towards recovery very soon.

Am I doing enough for me and my family?

Well, I got a letter of rejection today from the specialist ED clinic in our county - I am deemed not 'ill' enough without further 'evidence'. This is the second time now. There is a six month's waiting list for NHS counselling here and don't even think about in-patient treatment! There's nothing available...My only hope, aside from what I am trying to do on my own, is to go private. This costs approximately £45/hour. At the moment, we aren't able to afford it. Hopefully, when Ian's house sale completes in the next few weeks, we will, as I do believe counselling will help me enormously: to exorcise these demons once and for all.

I wish you and your family so much. And I do appreciate your comment. I just hope that you also believe that I am doing the best I can with such limited resources.

Take care, Ann.

Charles Parsnip said...

Thanks for taking the time to respond, Ann.

I just want to add to Annie's comment that there are no self-help groups in our county, and B-eat (the UK eating disorder charity) have referred us to agencies that also consider Annie to be "not ill enough".

I'm not sure if non-UK readers are aware, but the National Health Service (NHS) operates like several different "companies" for each county. Each "branch" has its own policies on healthcare, so what might be available in one county, might not be available in another. Free medical care in this country, or rather the quality thereof, is dependent on postcode.

Additionally, we have contacted several private specialist ED cousellors. There are a grand total of 3 in this county. Two have not responded to phone calls or emails, and the other one is quoting similar prices as the above.

Finally, I have (what I was told was) a comprehensive healthcare plan with my job. Unfortunately, it does not cover a spouse for psychiatric problems. Reading the documentation further, there are many other such loopholes.

Please don't think we're moaning about this. We are doing what we can with our available resources.