Anorexia - 12 months on from a year ago
As a coincidence, this morning Ben and I were comparing this January with where we were one year ago with the anorexia. The progress has been painfully slow; in fact I'd say things were on a serious downward spiral for the first six months of last year and, as anyone who's lived with anorexia will know, eating disorders are jam-packed full of 'false summits' which can raise your hopes only to be dashed back down again. But, after months of anorexia hell, I firmly believe we turned a corner round about October 2010. Not a corner in terms of weight gain, but a definite corner in terms of attitude change. And, from experience, I believe that until the attitude changes the recovery from anorexia can't start 'for real'. But I'm not wearing rose colour spectacles. I know there will be trouble ahead (as the song goes...). But in 2011, both of us are better equipped to deal with the anorexia than we were 12 months ago. Hopefully this blog may help other parents of anorexia or eating disorder sufferers who are where we were 12-18 months ago.
But first a quick summary...
When did the anorexia start?
It's difficult to pin-point when Ben's anorexia started. Ever since he moved to secondary school, he'd been an active and athletic boy. Before the anorexia kicked in he'd been a star player in the rugby team and also played for his local rugby team. Pre-anorexia, he also enjoyed squash, swimming, walking, cycling, cross-country and athletics.
In the summer of 2008, a year before the anorexia clouds started to gather, Ben and his dad did the Coast2Coast cycle ride from the English Lake District across to the East Coast. In those pre-anorexia days, Ben was a physically fit and energetic boy, he had a lovely circle friends, he had an encyclopedic knowledge of history and geography - and he was consistently top of the class in a range of academic subjects. The perfect son, really. We were incredibly proud of him! And never, in a million years, could we ever guess that anorexia was about to muscle its way into our lives.
Anorexia crept in virtually unnoticed at some point during the summer of 2009 (although looking back there were warning signs of anorexia even earlier). By October 2009, we realised with horror that anorexia had entered our lives. By Christmas, Ben was locked into the anorexia; anorexia held him like a vice.
Life before anorexia
Long before anorexia, Ben had what you might call 'puppy fat' at primary school. He was also much quieter and was bullied by a boy who viewed him as an academic rival. But once at secondary school and away from the bully, Ben threw himself into lessons, sporting activities and his new circle of friends. He was very happy at school and at home. The weight dropped off, but in a healthy, normal kind of way.
Then in summer 2009 everything changed... Anorexia slowly crept into our lives - and the anorexia was to completely and utterly change our way of life. Anorexia also changed us, as parents. But, in a bizarre way, anorexia has also strengthened us and made us better, more caring people.
Anorexia promises the perfect physique...
Anorexia tempted Ben with promises of looking physically perfect. Ben's main aim was to get a 'six pack' to impress the girls. With this 'six pack' would come increasing self-confidence and popularity. By eating less and exercising more he would achieve his aim.
His role models became the adonis-style men you get in men's fitness magazines in the same way that girls might aim to look like the impossibly gorgeous, size zero celebrities or models you get in women's magazines with their personal trainers, designer clothes and hours of dedication in the gym.
The only problem was that in practice it didn't work out like that. Anorexia robbed Ben of his self-confidence, his self-esteem, his social skills and his sense of fun. He even lost his much sought-after 'six pack' as the anorexia began to eat away at the muscles in his body.
Anorexia - the clouds form
I can't remember exactly when the anorexia joined our family. I think it was about late September 2009, although looking back there were warning signs earlier in the summer when Ben started exercising more and carefully watching what he ate.
He also became much more interested in cookery. Crucially, he also started paying a lot of attention to what went into a recipe: calories, fat, etc and the word 'healthy' cropped into his conversation about food over and over again...
Anorexia came on holiday with us?
On holiday in France in July 2009 Ben was swimming 100 lengths a day of the holiday villa pool (mind you, he'd done that the previous year so we weren't unduly concerned). But he was also going for a run every day, turning down all offers of ice cream, refusing to put butter on his toast, making his own pack lunches and increasing his intake of fruit and dried fruit.
When we got home he joined the local gym, went on lengthy and very grueling runs, and started to see his friends less. This concerned us because up to then sleepovers, meals out, cinema visits and hanging out with his mates around town had been a regular part of his life. Ben also seemed quite subdued. He seemed to have lost his usual zest for life and his sense of fun.
Anorexia - Ben's grandma gets worried
Then in September my in-laws came to stay and Ben's grandma immediately commented on how much weight Ben had lost. I guess when you see your child every day it's not so obvious. She hadn't seen him for six months.
It was probably mid to late September when I started to be sufficiently concerned to make the first of three appointments to see our GP before finally persuading him to refer Ben for specialist anorexia treatment and the Big Wait for our first appointment with CAMHS.
Anorexia takes over
Over the next few months our family life was to undergo a complete shift from being a normal family to being a family coping with anorexia nervosa.
Anorexia had taken over Ben. Anorexia had taken over our family. And anorexia isn't just about eating; it's about a stack of other symptoms - like depression, panic, zero self-esteem, etc. I don't just mean feeling a bit 'down' now and again, I mean deep, dark depression and self-hatred. I mean banging your head against the wall, or thumping your fists against your skull, throwing things around and animal screaming kind of depression.
Anorexia - the long CAMHS waiting list
The first time we took Ben to the doctors (in October 2009), the GP just said "Eat more and come back in a week's time", followed by three similar appointments. In the end we had to almost force the GP to refer Ben to the specialist anorexia team at the CAMHS unit.
Naively we thought we'd get an appointment right away and were horrified to find the waiting list was going to be 18-22 weeks, crucially NOT from the day of the referral but from the day CAMHS wrote to us to tell us we we'd been added to the list.
It was 23rd November before that letter arrived. A quick calculation told me it could be EASTER before we got help for Ben's anorexia. I wanted to scream!!!
Private treatment for anorexia
In the end we managed to find a private CBT therapist (cognitive behavioural therapy) who provided a bit of 'stop gap' treatment, but it wasn't ideal (thankfully we had some private health insurance). But the Good Thing that came out of this was that she got Ben to start putting together a 'positive diary' of daily positive thoughts and actions.
But still the CAMHS waiting list loomed ahead. What state would Ben be in by the time our place came up at Easter? And how many assessments would we have to go through before the actual anorexia treatment started and, more crucially, began to take effect?
Anorexia for Christmas 2009
At Christmas I thought about all those parents everywhere who, at Christmas, want - more than anything - to get their 'little boy' or 'little girl' back, whether it's anorexia, other eating disorders, drugs, runaways, gangs, crime, drinks, going off the rails or worse.
While everyone around us went about the festivities in the usual jolly way, we felt as if we were just play-acting in a nightmarish parallel world.
As we went through another 'crisis' on Christmas Eve as Ben exploded in the kitchen about some calorie / food issue, I sobbed that I wanted my 'little boy' back. Christmas Eve was particularly poignant for me because it was the day, 16 years earlier, that I'd brought Ben back from hospital following his birth. Christmas Eve 2009 was our worst-ever.
Curiously on Christmas Day itself, despite the worsening anorexia, Ben actually ate a full Christmas dinner and tea without much complaint. It was almost as if we'd been given Christmas Day off!
But of course by Boxing Day anorexia had returned with a vengeance...
The anorexia 'goblin'
With anorexia it’s as if someone else moves into your head. Someone that taunts you all the time, telling you you’re fat and unattractive, and that you’ll never be popular until you get thin.
Many anorexics give this 'someone' a name. Anorexia is often named Ana, Anna, Rex or ED (Eating Disorder). One parent described anorexia as being like having a goblin on his daughter's shoulder all the time. Some people even think of anorexia as a kind of 'demon'.
Anorexia has you pinching the skin on your skinny stomach, taunting you that it’s rolls of fat. Anorexia makes you exercise like mad and examine yourself in the mirror critically. Anorexia makes you hate what you see. Anorexia lies to you that it can make you ultra handsome, ultra slim and ultra confident.
Anorexia lies that it can put you in control of your life. And part of this control is to control exactly what goes into your stomach, how much of it and when. The minute you deviate from this rigid eating pattern, anorexia lies to you that you’re out of control. Just one serving of dinner that’s not the 'right size' and anorexia can have the sufferer banging their head on the fridge and screaming. I know, because that’s what Ben was doing by February 2010.
The surreal world of anorexia
Looking at family photographs was a painful, instant reminder of what Ben used to look like and should look like, but didn't anymore. We had a thin waif for a son who looked like a concentration camp victim and whose mood was so volatile I was terrified every time I picked him up from school for fear of how his day had been.
For any parent, watching your child suffer with anorexia is one of the most excruciating and painful things you'll ever face. I just wished there was a magic pill you could take and - Hey Presto! - the old Ben would be back. I can tell you, we were been keeping the Kleenex manufacturers in business!
Unlike a physical illness, you can't take any medication for anorexia (apart from anti-depressants). You can't have an operation and it goes away. Worse, the wonderful, level-headed, intelligent child you've spent 16 years rearing and getting to know has undergone a total transformation into a volatile stranger whose very sanity seems to have gone AWOL.
Anorexia creates a myriad of emotions
You feel angry. ("Can't he see what he's doing to himself / us?!") You feel frightened. ("How long is the anorexia going to last? Will he ever come through it? Will we ever get our boy back?") You feel frantic. ("What damage is anorexia doing to his body? Could something tip the balance and lead to the 'S' word we never mention and daren't even think about?")
You feel preoccupied. (You can't think of anything but anorexia and the situation.) You feel jealous. ("Why is everyone else's child OK when mine isn't?") You feel guilty. ("Is it something we've done as parents? Should we have picked up on it earlier?")
Anorexia also makes you feel very isolated. Okay, there are anorexia help lines you can call and a fabulous forum - and the CAMHS team. But it's difficult to talk to a 'lay person' about it; to the outside world it's such a little-known, much misunderstood and even taboo condition. I knew virtually nothing about anorexia until Ben contracted it - now I'm an anorexia expert!
But living with anorexia is like living in a surreal world while the rest of the world goes on around you as normal.
So that's a quick summary up to where we were 12 months ago. To read more, and to read a diary of how we got on between then and summer 2009, click here to go to the little website about our battle with anorexia which I set up six months ago (currently out of date as I haven't had time to update it at all). Much of what you see above features on that website.
Anorexia - from summer 2009 to January 2011
Unfortunately following the last entry in the diary on my website (July 2009), Ben's anorexia took a turn for the worse. It started with our holiday in France which was a nightmare with Ben resisting food intake and in a terrible, depressed mood.
The depression got worse over the summer, as did the resistance, and it was a real uphill battle to keep things afloat. Meanwhile Ben continued to lose weight; something which continued for the next few months as he headed to his lowest ever weight (but not low enough to warrant hospital admission).
The summer holidays were a nightmare with regular threats of suicide. Ben even tried to climb out of the loft Velux window on one occasion. His psychiatrist suggested starting a course of Prozac to help lift his mood and it wasn't until September that he finally agreed to take it. Prozac takes a few weeks to work, but once it did, it was amazing and has proved a true crutch.
Back at school with anorexia
Considering Ben had been away from school since Feb/March, I was really nervous about him starting back in the Lower Sixth Form in September. I was worried about the social problems (remember, he'd found it difficult to walk across the playground or even sit his GCSE exams with his peers). I was worried about school dinners and the fact he'd be eating next to nothing. How would we manage them? I didn't live locally so I couldn't go into school to monitor them.
The first week or so weren't good. Ben avoided his peers like the plague and spent all his time including breaks, lunchtimes and free periods in the library, swotting. Meanwhile he began a brand new phase of not sleeping due to anxiety - and I mean REALLY not sleeping; at the most a couple of hours a night. Lunches were predictably disastrous which resulted in me sending him in with packed lunches which also proved pretty disastrous as he was still resisting food unless actively encouraged by me being there physically.
It also didn't help that some younger kids were making fun of him eating his packed lunches (no-one else at his school eats packed lunches).
After a few crises, we - with the fantastic support of the school and at the suggestion of CAMHS - made a decision. Ben would go into school mornings only and come home for lunch. School would send home work for the afternoons and friends would lend him their notes.
On days when Ben didn't sleep, he often missed school altogether. However his sheer determination to keep up with his peers, the fact he's pretty bright and the incredible support of the school has meant that he's not doing too badly at all. His grades are a bit lower than usual, but - frankly - who cares? The most important thing to me isn't whether he gets straight A's and gets into university; it's that he eventually recovers - fully.
Things have improved on the social front - no more escaping to the library! In fact if it wasn't for the sleeping problems and the school lunch issues, he would probably be able to be in school full time, without any of the nightmarish issues we experienced last year.
Anorexia - the weight
Ben's weight has been fairly stable since October following 2 / 3 months of steady weight loss. In October he turned a corner, attitude-wise, prompted - I believe - by another visit to the hospital when he passed out at school and his pulse dropped again.
That hospital visit was a nightmare, mainly due to Ben's behaviour when hospital security had to be called to restrain him as he tried to discharge himself, violently.
Following all this, CAMHS 'read the riot act' explaining that if he didn't put on weight, he might need to be hospitalised in the Eating Disorder Unit sooner rather than later, due to the low pulse rate. I believe Ben was sufficiently frightened to make the decision to turn a corner.