An inspirational film from Totally Tanya which I am going to show to all the lovely young women I’ve recently seen who are struggling with starvation.
During the last year I have read 4 manuscripts by anorexia sufferers who have written about the fine detail year on year of all their suffering. They have asked for my advice about publication.I have also read 3 published books by people who have actually found publishers for their books, to join the list of what some of you might call misery memoirs. These books usually are written after a degree of recovery but they are very tough to read as the behaviour which is a feature of the illness is revealed in all its stark detail.
I have to be honest with you, me and my staff as well, who know a lot about eating disorders were dismayed (that’s the best way I can put it) by so much reading of the accounts of the things people do to themselves and others with this compulsion to get and stay very thin. We are all suffering from Post Traumatic Anorexia Disorder. It is very hard reading, and a great deal of suffering all round.
As we move into Eating Disorder Awareness Week what really do we want to be aware of, tell me please? What kind of understanding do we seek? My question is, to what extent is this grisly detail useful for sufferers? For the public? For therapists?
In her book Almost Anorexic which is a nice book, the Author Jenni Schaefer cautions people from reading accounts of anorexic and bulimic suffering. She says, and I agree, that it will only increase worry, obsession and activate the competitive instincts of anorexics.
“OMG she got to 35 kilos, it means I’m definitely not thin enough yet!”
“OMG she ran a marathon on nothing but jelly beans, I’m certainly eating way too much!”
“OMG she began to purge, that’s a good idea, I might try that too.”
“OMG I’m not purging, that means I’m greedier than her.”
What is it that drives people with eating disorders to need to set down in writing all this pain. Is it just another form of “look at me” or is it part of the way that they can make sense of what has happened to them and recover. I don’t really know as yet.
But…. I have decided that these accounts do more harm than good to patients and are only useful to therapists who need to read all this to get a proper sense of the demons they are facing. This illness is very, very tough. It is an illness which is invited in and which doesn’t want to leave.
So as the manuscripts pile up on my desk, I will read them all but heaven knows I need some strength and I probably have seen enough for the moment. I don’t know if reading these memoirs or even broadcasting skeletal images on TV is going to help. What I really welcome are the accounts of recovery, like the work of Jenni Schaefer and also Emma Woolf; leaving out the pain of what went on before in all its grisly glory.
Starvation and self harm are not a pretty picture and knowing too much about it can kill.
A “Positive Disposition to Recover”.
Even if someone volunteers for treatment, if is often to seek relief from preoccupation with food, depression or physical symptoms. It could be due to rising concern about the risks of anorexia or to avoid the side effects such as infertility. Does this represent a real positive disposition to recover from the illness (whatever that means)?
Recovery from anorexia is not just about gaining weight. In many cases being willing to gain some weight is “conditional” on continuing to eat a very limited diet, often vegetarian or low in carbohydrate and fat.
Eating more is often conditional on continuing to exercise a great deal. There is a great debate about what constitutes “excessive exercise” and our opinions are clouded by views about the dangers of sedentary behaviour and the general approval which is given to people who “go to the gym”.
So what is really a positive disposition to recover? Many of the features of anorexia just will NOT go away if someone remains underweight. Cravings, depression, preoccupation with food and health risks do not go away if weight remains low. Many people want rid of the bad aspects of anorexia while continuing to have its benefits like staying abnormally thin. That’s not easy to work with. People will not want to look like you.
A “positive disposition” should include the desire to be free from compulsion to exercise, and the ability to eat a wide diet, with other people, and freedom from the constant chatter about what foods can and cannot be eaten. A positive disposition will include the desire to welcome the feeling of food inside your stomach. This will never be possible if weight is low.
Secretly though, I wonder how possible this kind of recovery really is – because all of these recovery outcomes are inconsistent with what gets someone into anorexia into the first place. The anorexic desire for simplicity, the fearfulness, the ascetic drives – are not features that can just “disappear”. These are aspects of personality which must persist forever. You cannot argue someone out of their basic personality.
So I’m not sure that I can demand a positive disposition to recover in what would suit me, and my expectations cannot be too high. I think that people and therapists must come to some sort of compromise with anorexia over what will be kept and what can go away for someone to live more happily. Experts might disagree with me.
Anorexia And “Force Feeding”- Self Determination Or Self Annihilation
A while ago I was listening to LBC radio. The subject was a decision in favour of the so-called force feeding of patient E. On Saturday Norman Lamont suggested that the decision to force feed could be an intrusion on her right to self determination . What complicates this case is that the parents of this young medical student,- anorexic since eleven years of age-wants their daughter to be left to die with dignity.
There is nothing dignified about anorexia or any other mental health condition for that matter. Also, I just wish that people would STOP using the term “force feeding”, which reminds us of the traumas inflicted on suffragettes on hunger strike to obtain the vote for British women. I just wish that people would use the proper term, which is ENTERAL FEEDING.
Many clinicians have been writing in favour of the judge’s decision on Linked In. We talk to each other about things we know, which is that low weight impairs the ability to think clearly. That at low weights the anorexic voice drowns out logic, reason and happiness.
But not-one said it better than Kate, who came nervously to the radio to express her point of view. Kate has been anorexic since age 9 and in hospital many times during her young years. She said “I have no idea why I just didn’t want to eat, but I didn’t, and there were times when I would have been very happy to just fade away.
But they didn’t let me, and there were times when I was on a section and they threatened me with the tube…. No it wasn’t a threat, it was just something they said would happen but it felt like a threat at the time. Having no control over what they put in it was the worst thing imaginable for me.
But I somehow got to the age of 20 and I said to myself, I’m sick and tired of this anorexia. It took 11 years for me to admit I had a problem. So I made myself start to eat. I’m 24 now and life is so much better. Life isn’t a bed of roses but anorexia is very hard work; and I had enough.
I spoke to my father about it and he admitted that he had something like me when he was in his teens, but being a man nothing was said or done about it.”
The interviewer asked, “Everyone is saying that it’s all the pressure on young girls to be slim, in magazines and so on?”
“Oh no”, she said, “When I was nine I hadn’t even seen a magazine. It’s nothing to do with magazines and models, it’s just the way the brain is wired”.
So there you have it from the people who really count. Clinicians know very little. Listen to the people who have looked into the pit and been dragged into the light, kicking and screaming. At all costs we have to arbitrate in favour of the wish to live.
From the persepctive of someone who suffers.
Recovering from an eating disorder isn’t just about the skills of the therapist. There is so much research out there about treatment, causes, associations and outcome studies. But we need to hear it from the horse’s mouth to be really present and available for the people we want to help.
Maybe our job is to help people to want to get better; to make recovery seem more attractive than staying ill. We must beware about being too enthusiastic about this. It would be like trying to convince someone gay that they would find life better if they were straight. We must realise how scary change can be.
Then our job is to guide them along more helpful pathways, not look back and find something or someone to blame. The client is the expert, not us, as Emma Woolf showed us in her memoire of recovery, “An Apple A Day”. But, the client still needs us by their side as what… A therapist? A mentor? A guru? They need our wisdom alongside their own.
This is what they tell us aids their recovery; in no order of importance
Reconnection: – but not, I think the pro anorexia, community. People with eating problems often fear being ordinary and unimportant but this isn’t the most helpful way to show how unique you really are. They say that things like YOGA, JOURNALING and SPIRITUALITY helps them to reconnect to themselves. Therapists please take note!
Close relationships: Relationships aren’t always helpful so we need to learn more about this.
Statements of support: Parents and carers need to say “I’m there for you” – what other statements are useful and what are not. If someone says “You are looking better these days” it can send your client into a spiral of worry.
Empathetic Friends: Friends keep away from someone with an eating disorder because they feel they have to tread on glass. Or they just avoid the subject altogether. I need to know, what exactly is an “empathetic friend?”
Compassion: we have to feel sorry for someone, not just be angry with them. They also need to learn to feel some compassion for themselves. Eating disorders are such hard work.
Therapy: it’s good to know that therapy helps as well, but looking forward is more important than looking back.
Learning HOW to eat healthfully: There are too many bad rules out there about food so people are scared of useful foods like carbs. I would add that learning the real facts about food as well as practicing mindful eating skills is great. Use eating experiences as experiments to banish fear about weight gain. Getting back in touch with appetite with proper training is much more helpful than simply persuading people to “eat properly.”
Education about the effects of the disorder: This has to be done with compassion not as a threat.
Acknowledgement The Journal of Treatment And Prevention Bruner Mazel May-June 2012
We try to provide this help to people with eating problems. If there is anything that we can do or write to help people on their recovery journey, let us know. A quick email to firstname.lastname@example.org will always guarantee a personal reply from the Founder, Deanne
Upholding the right to give enteral feeding to someone too sick to decide. Read more on my blog