Sunday, 19 October 2008

Part #22

Is anorexia a choice? 

There are two camps on this, aren't there? Some people refer to it as a 'selfish' disorder and that sufferers have a choice - "to be or not to be, that is the question..." (with apologies to Shakespeare). 

So, if I am totally wrong, then why is Thomas R. Insel MD and Director of the National Institute for Mental Health stating, in a public letter, that eating disorders are, from research they have discovered, a 'brain disease with severe metabolic effects on the entire body. While the symptoms are behavioural, the illness has a biological core, with genetic components, changes in brain activity and neural pathways, which are currently under study...'

Why does one of the directors of FEAST write in response to my comments and tell me:

"Annie,

The information is out there, but not making its way into practice as quickly as it should. Most clinicians were trained in an earlier era, and because treatment requires multi-disciplinary teams there are a lot of non-scientists having to cope with a paradigm change that isn't easy for laypeople to get a handle on.

Our best bet is to find and work with teams who do have that interest and training - few and far between. But there was a time when people scoffed at the idea of bacteria and viruses, too.

You are not fooling yourself. Your illness is NOT a choice you are making, and there is ZERO selfishness involved. You have a brain condition that distorts reality and holds you back from progress. But it is TREATABLE. You can fully recover! You need skilled clinicians who can bring your brain function back to normal: with nutrition, normalizing behaviors, time, support, skills, and a safe environment. Put yourself in the hands of a team that believes you can recover, and will help you get the tools to do it. YOU CAN RECOVER, but YOU DON'T NEED TO DO IT ALONE."

So, where are these skilled clinicians for us UK-based people? The States seem to be a hell of a lot more switched on than us Brits with our stiff-upper lips who still believe that mental illness is to be ignored, euphemised and locked away. The amount of 'lunatic asylums' which have now been turned into Executive Housing here is astonishing. Obviously your Local Yuppy needs a home more than your Local Loony. The Health Service have advocated 'Care in the Community' and consequently, "hidden homelessness" is now estimated at 400,000 people in England, Scotland and Wales - those who have slipped through the net and aren't counted on the census. And they are estimated to be there due to:

  • Physical and/or mental health problems
  • Substance misuse
  • Unemployment
  • Basic skills needs
  • Dyslexia and other learning difficulties
  • Experience of sexual or physical abuse
  • Have spent time in care
  • Have spent time in the armed forces
  • Experience of the criminal justice system
  • Relationship breakdown
  • Problems accessing welfare benefits
Doesn't make our welfare system look particularly good, does it?

Trying to get help for any form of mental health issue in this country is like trying to get blood out of a stone. Referrals take forever and are generally knocked back. Private medical insurance won't cover you over £500 p.a. in my experience, and with therapy costing approximately £100 per session at specialist clinics such as The Priory, we are allowed five sessions to 'get better'. I am on a waiting list for NHS ED help. And I know for sure, from past experience, I will not get that help. I wait the six months and then they tell me I do not 'fit the bill'. There are no self-help groups in the locale; there are no help-lines running at certain times of the day and night; and GPs are, as described, General Practitioners, with ten minutes allocated per patient.

I can't even get to see a dietician! Can you believe that? So, I do my own research, constantly. I read, I try, I attempt to re-programme myself, I deny myself 'comforting behaviours' and end up wound up to high heaven because I, as yet, don't know how to handle these massive conflicting thoughts whizzing around in my head. Because my only lifeline is seeing a private counsellor for one hour each week.

Today has been a sh*t day for me. I discovered, much to my chagrin and horror, just how much self-confidence I have now lost, when I was put in a situation which I wasn't expecting and to my embarrassment, didn't have the tools to cope with it. Something which used to come second nature to me filled me with nausea, fear and an urgent desire to leg-it as fast as I could. And it knocked me off kilter for the rest of the day as I was so shaken by how this situation had affected me so profoundly.

Tomorrow may be a sh*t day for me. I anticipate some anxiety surrounding it - and that is not meant as a self-fulfilling prophesy, as I can feel the agitation there already.

Tomorrow, I go to see a specialist for a possible sigmoidoscopy/colonoscopy due to the rectal bleeding.

And it's my mother's 73rd birthday. And it is the first birthday of hers which I have chosen to ignore. No card, no acknowledgement, no phone call. I haven't even reminded my daughters to 'send Nanna a birthday card' as they aren't with me this weekend. 

Karen coined the whole 'Mother/Daughter' debate up very well in her last post, A Mother's Love . This post resonated with me. It's times like this when we want 'A Mum'. There have always been times when I've wanted 'A Mum' but she's rarely been there. Not at my last wedding; not through either of my pregnancies (once due to distance; the other due to her not talking to me); not through the rough-housing I received from my ex; not through the breakdown of my relationship with 'the ex-partner' which blew me sideways.

So. I made the decision not to acknowledge her birthday some time ago. It's not just a 'tit-for-tat' thing, it's a weariness and an inability to be a hypocrite. But it has affected me deeply today and the few days where things have been good have gone to rat-sh*t today as I am struggling to both cope with and vocalise my turbulent thoughts.

But, tomorrow IS another day. And perhaps it won't be as rubbish as I am expecting?

19 comments:

Keli said...

I admire your persistence and resolve. It's too easy to label EDs a choice. Hang in there. I'm sure a way will open for you to obtain the treatment you need.
As for your mum, undoubtedly you made the right choice. She caused and causes you much pain. There's nothing wrong with banishing her. I've done it myself with hurtful people and though at first, it was difficult, being one hellbent sometimes, on doing the right thing. But eventually, it felt liberating and wonderful!
Tomorrow is a new day.

MelissaS said...

these are my first thoughts. anorexia is absolutely not something you choose. i think of myself anorexic, bulimic, compulsive eater, alcoholic, drug addict. i just have an addictive personality -- always have, always will. always have to watch myself. second,my dad had colon cancer and i;ve gone for regular screenings since i was 32. the bleeding is from hemmrhoids from laxatives, et al. and third, sounds like your mother did nothing to earn even a card. good for you!

Linda and her Twaddle said...

Anticipating an anxious event is not such a bad thing if you can somehow use visualisation to prepare you for your reaction. Sort of like rehearsing for a play.

Here in Australia we seem to have quite a bit more awareness of how mental health is impacting the lives of people. But the bottom line is this, unless someone has been exposed to it they really find it hard to accept. Many people still have that "just pull up your socks" attitude to it all. And most people think that ED's are all about being slim - which translates to vanity, ego etc. If only it were that simple.

One thing we have here are a lot more support groups that do provide help and hopefully reduce the feeling of "aloneness" that goes with depression.

I think depression is on the rise as society and family fragments and true caring for others declines. Hopefully things will change.

Mark Dykeman said...

Fingers crossed for you, Annie!

Mars said...

perhaps going on a medical holiday? some do go off to thailand or malaysia where healthcare is very good and cheap. i'm not sure about EDs though. But perhaps thats an option if you're not getting help in the UK.

Annie T said...

Keli: It's surprising how many people just end up banishing family members from their lives. It's the old adage: you can choose your friends but you can't choose your family, and it has always made me wonder, why, just because we have the same blood, are we obliged to tolerate them and put up with their rotten ways (if they ARE like that, I mean). Time to move on. And I AM glad I have cut her out of my life - it's just assimilating it all now and going from there.

Melissa: Yes, I suspect this bleeding is from haemorrhoids - something I had operated on a few years ago...and I think I am dreading the prospect of that again more than anything.

Linda: I AM going over this scenario in my head, time and again...I even have a long dress on which will ensure my modesty isn't too compromised in the event of a 'quick poke about'! I do wish we had support groups. If I had a clue as to how to get one going, I'd galvanise. Maybe it's something I should look into further and get some advice.
I certainly agree that as families and society fractures there are going to be more problems. It seems to be a First World epidemic.

Mark: Thank you.

Mars: Just the holiday would do nicely, thank you! And I doubt, very much ED would be top of the list in SE Asia, unfortunately. ED is an emerging problem in the Middle and Far East, admittedly, but I don't think it is given much consideration as yet.
So, I think I'll go to Mauritius for two weeks and just chill out. No meds. Just sun!

Karen ^..^ said...

First of all, I apologize for not commenting this sooner. I spent a few days offline, and when I got on this morning, there were quite a few emails and posts waiting for me. I was a little under the weather this weekend, so I spent much of it on the couch, trying to breathe, lol. Damn Florida allergies!!!

Second, thank you for the shout out and the link. Yes, there are many times in my life that I wished for a mother's love, but at some point, acceptance hit and I think I made the right choice to stop letting it so profoundly affect me. I feel pride in the things I accomplished in spite of not having had a mother's guidance. Or a father's for that matter, as I have had to be both mother and father to my girls much of the past 9 years. I feel you have made the best possible decision for yourself as well. We truly do not need toxic relationships in our life under the BEST of circumstances, and we sure as hell don't need them under the difficult circumstances you must face day after day. She is the reason you are suffering from this affliction to begin with, so it makes perfect sense to slice her cleanly out of your life. I am proud of you for taking this difficult step for yourself. In time, the gremlin voice will quiet. It is just leftover bad energy from having her in your head for so long. 73, huh? Some folks never grow up. My mother is 59. I thank God she never raised me, as I probably would not have survived it. Life has a way of making things work out, even if it isn't the way you would have chosen it.

As for the deplorable state of affairs the UK mental health system faces, well, we have that for physical issues. The mental health community is very progressive here, but try and get a stress test or a pap smear without insurance, and you are up a creek without a paddle.

My very best wishes for your tests today, and may you have a good day, not a shit one.

Take care, you, and do a really nice thing for yourself today. Something no one else would think to do for you. That's an order. One really nice thing, ok?

I'll try to do the same.

Love to all,
K

Bob J said...

Dear Annie,

"...why is Thomas R. Insel MD and Director of the National Institute for Mental Health stating, in a public letter, that eating disorders are, from research they have discovered, a 'brain disease with severe metabolic effects on the entire body. While the symptoms are behavioral, the illness has a biological core, with genetic components, changes in brain activity and neural pathways, which are currently under study...'

Here's why (in my admittedly less than humble view) he is saying this :

He is saying this because of SCIENCE ENVY.

Academic Psychology has a never-ending pathological anxiety surrounding the implication that somehow psychology is not a "real science." Such folks give the impression of believing that what you and I and most people think of as "psychology" is, in truth, nothing but a wishy-washy professional embarrassment that will only be remedied by thinking of problems in terms of genetics, neurotransmitters, brain scans, chemical imbalances. In short, things that will produce the kind of *measurable hard data* that is the currency of the other "real sciences."

The tension over psychology not being a real science has a long history, and has produced several swings in philosophy over the last 40 years. Back in the 1970's Behavioralisum was all the rage. You want someone to do something, you reward them with M+M's, you want to change their behaviors, you take their M+M's away. The profession was going gah-gah over Behavioralism because you could develop experiments that produced HARD DATA....just like "real science" you know ?

The down side to all this was that it treated humans and human behavior as though people were machines. It attempted to reduce the nuances and subtleties of behavior to nice tidy numbers on a data chart. Just like.....the other "real" sciences were able to do.

However, as time passed there was a backlash against this sort of philosophy, and the pendulum swung the other way, and the humanistic arm of psychology once again came to rule the field. The sort of psychology that would find a lot of real red meat in the things you have been writing in your blog was once again in ascendance.

But science envy never really died, and with recent advances in medical technique, advances that once again allowed for the collection of HARD DATA, the arm of the profession which views human behavior in more mechanistic (i.e. more "scientific") terms is once again on the rise.

So yes, for the time being, count on hearing ever-more about brain scans, neurotransmitters, genetics, and mental disorders in terms of disease rather than a view that concentrates on the sorts of complex psychological interactions that old-school psychologists tend to pay attention to. We will hear more of the sort of conceptualizations that....well......the people who dream of there being a pill or an operation for everything tend to think about.

And yet, if history is any indication, there will be yet another backlash against these sorts of mechanistic conceptualizations, the pendulum will swing back and humanism will once again come to the fore. Given the nature of the human experience, humanism and the humanistic view will always retain its power, I suspect.

However, considering the authentically fascinating and informative nature of current medical-style discoveries, it may be quite a while before it does.

Bob J said...

"...Why does one of the directors of FEAST write in response to my comments and tell me:

"Annie,

The information is out there, but not making its way into practice as quickly as it should. Most clinicians were trained in an earlier era...there are a lot of non-scientists having to cope with a paradigm change that isn't easy for laypeople to get a handle on....Your illness is NOT a choice you are making, and there is ZERO selfishness involved. You have a brain condition that distorts reality and holds you back..."

I'm assuming this came from L.C., and she says this because she is, or at least was for a time, a well-known (among certain groups) proponant of the position that "prior life events and experiences" have little or nothing to do with a person developing an ED.

In short, that the whole thing, from start to finish, is genetic.

And that "clinicians trained in an earlier era" (ie old-school humanist-types) simply don't get it about that.

Whereas, in the end, the true position will, as with all things, probably end up being somewhere in the middle.

Chunks of Reality said...

It will be a better day tomorrow. You've been through so very much that honestly, I think the only way is up.

*HUGE hugs* my dear...

Miss Scarlett said...

I believe, that with many issues, people who are unsure, insecure, fearful, bias, prejudiced, and ignorant CHOOSE to believe that these illnesses are choices. They are medical diseases and disorders, no different than heart disease, cancer, lung disease etc. What they should be realizing is that ED sufferers need just as much love and support as a cancer patient, or a heart attack surviver.

If society could be as kind, helpful, and supportive to ED sufferers and they are to the more "popular and accepted" diseases, just think how different your journey would be.

The important thing is that you are putting a face to the disease, which in my opinion, is the most important thing you can do. To humanize a disease is to make it more understandable, to put a face on a medical diagnosis is they key to gaining understanding and support from society.

Lexy. said...

Cancer patients cannot choose to get better. People who suffer from Heart Disease cannot choose to get better.

Disease is the key word there. There's a reason it's called an eating DISORDER, not DISEASE.

I'm just one person, but if an ED was a disease, I never could have CHOSEN to get better. WITHOUT medication. WITHOUT doctors.

You complain of health problems, and the treatments they will result in and receive sympathy. Would the same sympathy be applied to someone who sees a plastic surgeon to have their self inflicted scars removed? What's the difference? They were obviously 'sick' to have cut themselves in the first place, right?

The idea that you are genetically predisposed to self destructive behaviors is a valid point, but to deny that everyday you choose to act on your impulses, whether that's sticking your finger down your throat or swallowing a box of laxatives, is hypocritical.

You may say that you need the laxatives due to the damages you've done to your body over the years, but does that mean your Dr supports the amount and frequency that you use them?

There may be other contributing factors to your disorder, but your choices are just as, if not more than, important.

Even schizophrenic criminals are still found guilty, despite the reasons, causes or justifications.

Your life. Your choices. Own them.

MelissaS said...

does it really matter if it's a behavorial or medical issue? we're not well now, and we need treatment either way. still, my brother and sister had the same parents and neither of them drinks at all because they don't enjoy it, neither has an eating disorder or has any interest in drugs and neither have ever needed sleeping pills. i have always felt addictiveness was born in me. and I would not be in the pretty good space i am without meds, therapy , inpatient and outpatient treatment. in fact, with my former drug habit, i was becoming a problem to society. what would i have done without health insurance coverage?

Annie T AKA Agnes Mildew said...

Karen: Thanks for your message. I didn't do anything nice for myself yesterday, but I certainly did today! And I have indulged in hours of reading an hilarious book by a BBC Radio DJ which has had me laughing out loud. Also, the girls are back, which certainly keeps me on my toes!

Bob: Lots of points there. The one that does it for me is your final one; yes, I also believe it's a bit of nature and nurture and will eventually land somewhere in the middle.
The brain is an extremely complicated organ. I did a degree in Speech & Language Therapy 16 years ago and we learned, even then, that only approximately 30% of the brain's function is known to man. All I know is that any disorder of the brain is exceptionally complex, greatly misunderstood by the layperson - sometimes feared and despised, too - and that a good mix of treatments, if available, will work for any mental health illness.

Chunks: Thank you!

Miss Scarlett: I don't think anorexia is a choice, either. I firmly believe there is some form of 'short-circuit' going on somewhere. There is a choice as to whether to throw up/take laxatives, I guess, as Lexy says in her own comment, but sometimes there has to be a much greater, over-riding force to stop you.
I beat anorexia for four years after I fell pregnant with my first daughter. I was 100% convinced that it would never, ever befall me again. I threw out every single 'small' piece of clothing and revelled in eating normally again. But complacency is only around the corner and it only takes a build-up of knock-downs for the self-esteem to falter, the comfort zones to kick in, and without any safety nets and coping strategies, that behaviour can easily become the 'norm'.

Lexy: I am glad that you have beaten your own ED and are able to speak with such knowledge and conviction. I applaud you for your courage and strength.

Melissa: It doesn't matter whether it's behavioural or psychological, right down at rock bottom. I guess I was battling out everything in my head yesterday, trying to find some pathway as to WHY it was.

But, yes, treatment is needed, and fast, for anyone suffering.

It seems to be a frequent lament of mine, but I bloody well wish I could get more of it.

Bob J said...

Annie,

Sorry for going off on my rant earlier. As you might imagine I tend to see things in humanistic terms. And while the new biological stuff is fantastically interesting....ummm.....at this point in time little of clinical use has come from it, so no matter what your stance, therapists are still kind of left with old-fashioned psychology as their tools.


I also tend to agree with what Lexy said : If EDs were diseases in the classical sense, then making personal decisions to get better would be of little or no use at all.

And yet all formal research on the nature of recovery stresses the primacy of intention, hope, resolution and decision-making as the major observable factors in the change process.

Treating mental health issues as diseases does seem to serve several current practical purposes : It relieves a lot of unnessisary guilt and stigma, and it frames things in terms that are a lot more comfortable for those who hopefully will be responsible for seeing that mental heath issues recieve the parity of attention and funding that they deserve.

Karen ^..^ said...

I tend to disagree. The mental health community has labelled alcoholism as a disease. It has labelled drug addiction as a disease. We already know cancer, diabetes and aids are diseases. Now lets approach the way they are treated:

If a cancer patient fights the cure, they will die. If they fight to live, many survive, but many also die. Does that mean they did not really "want" the cure? Or "want" to survive? If they fight the cure, give up, and decide they will never get better, they will SURELY die. Does their cancer cease to be a disease due to this, and become somehow the sufferer's fault? No. Why do people blame the sufferer for the ED then? It is EVERY bit as much a disease/disorder/whatever as anything else. Many studies have been done to show this. Why do people insist on staying ignorant of this fact? Especially someone who claims to have suffered from, and "beaten" this themselves? I just don't get it.

I feel that Annie is fighting this with every single thing she has, and if the posts are read properly, she is making slow but steady progress. She really is. Why now is there skepticism?

If a diabetic ignores the disease, they will die. If someone with aids refuses treatement, they will die. Why is this such a fucking mystery to people? An ED is a disease. It is a mental AND physical disease. The mental aspect will eventually manifest the physical symptoms. Simple. The cure? Not so simple. There are layers and layers to uncover, and fight, and get through. Some never recover. Some do. It has only partly to do with how much you "want" it. However, recovery will NOT happen if the person DOESN'T want it. Much like any other disease. With the desire to recover, the odds are better. Much like any other disease.

I just can't say it enough, or simplify it enough, it seems. Then again, it is early in the morning, and I haven't had coffee yet. :(

Cassie said...

Annie are you OK ? It's been several days since you have posted. I hope that you are well.

Bob J said...

Annie,

Waving hello from here as well.

Annie T AKA Agnes Mildew said...

Cassie & Bob: Hello and thanks for your messages. I am still here - just not got round to writing recently.

But thanks for your cheer!