Posts Tagged ‘Treatment’

Thoughts from the NEDA conference …

Thursday, October 21st, 2010

I wanted to write an eloquent and insightful post about the NEDA conference that I went to in New York, but I fear that I will be waiting a long time. Words are not stringing themselves together in the way that I’d like them to at the moment (which is a whole ‘nother post) and I am beginning to suspect that I may be over-complicating some of the relatively clear messages that I took from the conference. I have a habit of doing this.

Before I rip them – and myself – to shreds, I’m going to write down a few of the things that particularly stood out for me in two days that were full of information, and sharing, and caring, and all the things that I isolated myself from, both during my illness and, during my equally stubborn and internalised recovery –

1. You don’t have to do it alone

I had my first treatment for anorexia in 1993. Things were very different then. With limited understanding and some practices that wouldn’t stand up now, the ‘me Vs them’ model that eating disorders (EDs) are great at creating was given a good dose of unnecessary ammunition that took a long time to shift…

The NEDA conference, like the Beat ceremony the week before, was full of professionals, and carers, and those directly and indirectly affected by EDs, all coming together to help raise awareness and support people in their fight to get well. It was a joint event, on an equal footing, characterised by empathy and compassion rather than anger or blame.

I know that things are complicated. That there are financial considerations, and some outdated assumptions, and a huge deficit in support for men – but I got a real sense of collaboration that has to come to a more positive end.

2. Patience

A lot of this joint effort seemed to hinge on the recognition that recovering from an eating disorder is a slow process. That it doesn’t happen overnight, nor come immediately when the symptoms change or weight is restored. It requires, instead, a level of patience, a word that doesn’t roll particularly easily off my tongue -

Patience in waiting for the discomfort of change to gradually lessen.

Patience in learning that you can overcome challenges which seem insurmountable and innumerable.

Patience in catching up with experience and emotions and relationships and all the corners of a life that an eating disorder manages to get stuck in.

Patience in starting to trust others again –

Patience in them trusting you –

3. The other people

NEDA was honest and open, and it really made me consider how difficult it is for all those who are impacted by EDs; the family, friends and even professionals who also come to live under the shadow of an ED.

When you’re immersed, it’s impossible to realise the impact you are having on those around you or it was for me, anyway. Yes, I knew that I was causing worry; I felt terrible about pulling other people into the ED’s games and, yes, it certainly impacted on my home life and environment…but, I wasn’t quite able to translate this awareness into action, and I prized the eating disorder above everything else.

During the conference, I heard parents speak about their children; siblings, about the pain of not being able to save a sister or brother; and partners talk about how devastating the eating disorder was to watch -

It is hard seeing it from the other perspectives and difficult to resist the temptation to slide into guilt….but this is why the joint effort is so incredibly important; and why it makes knowing what we’re dealing with so key.

4. The science

I am not scientifically minded. I kind of see how it all fits together, but I have to concentrate very very hard. There’s lots of research coming out at the moment which even non-scientifically minded people like me can’t miss. It’s about understanding some of the neurological research and patterns; and also exploring how people are affected by eating disorder behaviours in cognition and things other than weight.

It sounds like we’re getting nearer to gaining a more comprehensive (body, brain, mind, context) take on what goes on.

I don’t think there was one cause for my eating disorder, nor that it will be possible to understand fully why I became so ill – but each little piece helps to make a bit more sense of the experience and the understanding helps me to move on.

5. Moving on

The ‘in recovery’ or ‘recovered’ question also came up a lot for me at the conference. I don’t know whether there’s an answer for this one: whether being ‘in recovery’ drags it out and keeps it present; or if it’s a realistic description given how quickly an ED can reassert itself, and how hard it is to transform some of the traits that can impact on its development.

For me, the conference was about recognising how far I have come – but also noticing the areas where my sensitivity is still high and acknowledging that I haven’t quite reached a resolution on some of the themes that were raised –

Like body image and self acceptance (because it’s not all about that, but the culture we live in makes the context hard) -

And relationships and emotional maturity (because I’m still catching up there).

It was also about acknowledging that I have moved on in relation to my own self perception. That, increasingly, I am able to separate myself out from the ED that I once saw as my character and identity; that I was attending the conference, not just as a recovering sufferer, but as a person.

This might not make sense, but it’s a mammoth move for me.

It’s a mammoth move for me, and one that wouldn’t have happened without all the treatment and support I received. This was my other message: the work that still needs to go on.

6. The reality

The NEDA conference was the second time in the space of a month that I have realised how lucky I was to survive and how fatal eating disorders are. I don’t know the exact figures, but every time I hear them, they seem to get worse; and every wasted life winds me.

I think things are moving in the right direction, but I hope they’re moving fast enough.

I also hope that some of the barriers that still exist (healthcare costs or insufficient treatment provision; a lack of awareness around different types of eating disorders), and the things that make it harder (the complexity of the body image / media / ED / self esteem relationships; the female focused language) start to shift – because fighting an eating disorder is not an easy battle for anyone to win.

Stopping Stopping Myself

Thursday, June 24th, 2010

With a mind that refuses to be quiet and is not very good at slowing – right – down – attempting meditation was always going to be interesting.

It is amazing what you can learn when you’re pinned to a chair trying not to overthink; because, as the facilitator introduced the need to remain mindful – in meditation – and described how to detach a little part of your consciousness to check that you are, indeed, relaxing –

the penny finally dropped.
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What Helps?

Sunday, May 16th, 2010

On Monday, I did a question and answer session with a load of health care professionals based in the East of England. There were (I think) a good mixture of nurses, GPs, psychologists, CAMHS, crisis teams, treatment centre managers…That kind of thing.

Because the week was rapidly sucked into a whirlpool and I have spent most of it trying to catch up with myself, I have only just started to process what we said; and, interestingly – although probably unsurprisingly – the question that arose in each of the groups I talked with was: “what are the things that really helped?”

I have talked, extensively, about what doesn’t help.
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Dealing With Things That Don’t Help

Friday, April 23rd, 2010

Yesterday I wrote about things that don’t help.

It was one of the hardest posts that I have written. It sent me straight back to some places that I have forced myself not to dwell on; and reminded me of how hard it is to have a voice. Particularly when you’re up against a system and not feeling that great about your own state of mind.

Today, I have been attempting – and failing – to advise other people how to handle these feelings.
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Making a Difference

Thursday, February 25th, 2010

The 22nd-28th of February is Eating Disorder Awareness week.

This is an important focus for anyone who’s been directly – or indirectly – touched by an eating disorder; and, for those who spend the remainder of the year campaigning, tirelessly, to change the misconceptions and put a few constraints on the terrifying spread.

There have been, therefore, some stories on the news; and some articles in magazines; and a scurry of activity, online, amongst the organisations and individuals out there who want to make a difference.

There are conferences going on; and new campaigns being started; and I have selected my five favourite recovery posts to highlight that it is possible –
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Uncurable

Friday, February 19th, 2010

“Do you actually want to get better?” was the question she asked me, when I had been caught, yet again, “bucking the system”. “And did I know”, she continued, “that the prognosis wasn’t good, for people like me?”

Well, no, actually, at fourteen I hadn’t stumbled over those particular statistics; and, no, since you’ve asked, I didn’t want to get better, if 5000 Kcal diet; pure terror; and you getting your way, were part of the plan.
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Pick and Mix Treatment

Saturday, October 10th, 2009

Treatment is a subjective experience. It may be dictated by prescription – but its success is down to how it works in relation to you.

I’m sure that an official spiel for each specialism is readily available; so, to try and be a little useful in my own special way, the following section looks at the different treatments I’ve had – conventional, unconventional and things that aren’t “treatment” but seem to help – and how they’ve made a difference.

It also comes with a few very big and very painfully learnt lessons…

Honesty is paramount – if you’re not being truthful, you can’t treat the real problem.

Time heals – don’t give up if the impact’s not immediate.

CBT

Wednesday, August 12th, 2009

I wasn’t a great fan of CBT – until I looked back at my recovery and realised that I’d been using the techniques all the way along.

The diarising and emotional detecting and practical planning have obviously been worth the effort because the moment I wobble, the positive voice kicks back in; and, whenever I take the next step, I go back to the tools and tips that have got me this far.

Unlike traditional therapy, you don’t have to keep paying out every time you need to sort a few things out. Once you’ve mastered the techniques, you’re equipped for life.
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Getting Help

Saturday, July 11th, 2009

A few years ago, I would have slammed the treatment for eating disorders. I would have blamed my failed attempts at recovery on professional incompetence, medical ignorance – and the government’s failure to provide an adequate national health service.

A few years ago, I would have said that nobody could help me. When you’ve tried everything from inpatient to outpatient – via day therapy and 24 hour guard – within private, public and locked facilities; delivered by doctors, therapists, psychiatrists, specialists, hypnotherapists …well, you start to feel that all the options have been exhausted.

Today, I can say that the latter’s not true – and that I’m probably not milky white in relation to the former.

The treatment for eating disorders is not, as I’d liked to have believed, fundamentally flawed -

I didn’t really help myself.
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Going Under – Hypnotherapy and NLP

Thursday, July 9th, 2009

If you’re hoping for Paul McKenna style puppetry, you might be a little disappointed. Hypnotherapy didn’t re-wire my brain or miraculously uncover the ‘big reason’, as I’d kind of been hoping for.

It did, however, shake things up.

A compete re-wire was not on the cards – but some subtle re-programming helped.

Hypnotherapy may not provide all the answers – but it shows you that they’re already in there.

And it helps you to decipher the code.
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Counselling

Monday, July 6th, 2009

You can’t beat a BT slogan: it is, most definitely, good to talk.

Being heard is equally important; being understood, a winning formula.

When you start putting things into words, you can deal with them.

When you start addressing difficult situations, you can talk through the confusion.

If you’re looking for a ‘get it off your chest’ space to say what you really think and feel – rather than what you should think and feel – then counselling’s great: but, a good counsellor is more than just a sympathetic ear; and, a good counselling section is as much about armchair detection and psychological sleuthing as it is about verbal venting.
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Nutritional Information

Friday, July 3rd, 2009

I’ve had a few small misconceptions about food that some good nutritional advice has helped me to correct.

For a start, fat does not convert into body fat.

Second, you get out what you put in – and no puns are intended. Invest wisely because your body is a temple.

Third, the car-petrol-food-fuel analogy isn’t as clichéd as it sounds. You can only run on empty for so long.

Nutritionists can really help to change your thoughts about food and, as I started to get my head in gear, they armed me with some great science to challenge some of the bizarre conclusions my anorexia had reached.
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