Having problems getting your eating disordered child to make positive changes?

A few years ago I attended a conference / workshop for parents of young people with eating disorders. Gill Todd - RMN MSc, former Clinical Nurse Leader at the Gerald Russell Eating Disorders Unit, Bethlem & Maudsley Hospitals, London - was talking about a therapeutic approach known as Motivational Interviewing (MI), used by clinicians to inspire motivation for change and which is believed to be especially helpful for people with eating disorders who may be ambivalent about change. I firmly believe that MI is a fantastic tool to have when you're a parent trying to get your child to take the next step on the road to recovery from their eating disorder. It's a great tool to use when things seem 'stuck', when you feel as if you're going round in circles or when you simply want to SCREAM at the lack of progress!

Are you a parent or carer looking for support from other parents of young people with eating disorders?

In early 2010, some months into my 16-year old son's escalating eating disorder (anorexia nervosa), I discovered a life-saving resource after a chance search on Google. It was the F.E.A.S.T. website (Families Empowered And Supporting Treatment of Eating Disorders) and its online forum Around The Dinner Table (ATDT). Through this wonderful resource I found the rock-solid support I needed from parents across the world who had 'been there, done it' and also those who were still battling to get their sons and daughters through the hell of an eating disorder such as anorexia, bulimia or EDNOS (eating disorder not otherwise specified).

Why Red Alert mode is a thing of the past, present and perhaps the future, too.

Yesterday at my therapy session we were talking about how, given certain triggers, my mind and body instantly 'ping' back into Red Alert mode - something I was doing on a daily, if not hourly basis when my son's anorexia was at its worst, and also right up through his first year at university - a period that was very tricky and accompanied by several mentions of the 's' word which put the fear of God into me. I told the therapist that reactions like this are very difficult to fix as they are not necessarily in the past. The anger against the GP and other medical professionals from that period in Autumn / Winter 2009 is in the past and therefore more straightforward to process using EMDR (Eye Movement Desensitization and Reprocessing) techniques. That's what makes it different.

Okay, so that's enough of sifting through notes from 2009. Let's look at the anger...

So why did it take an emergency admission to the cardiac ward at our local hospital to get my son finally seen by CAMHS (Child & Adolescent Mental Health Services)? (At the end of January 2010.)

Autumn 2009 - notes for the private psychiatrist

The following is from my book (Please eat... A mother's struggle to free her teenage son from anorexia) about the period when I was getting desperate for treatment for my son's escalating eating disorder. He was on a long waiting list for CAMHS (Child & Adolescent Mental Health  Services) treatment and so I felt the only option was to go private.

Autumn 2009 - some notes I made at the time about my son's worsening eating disorder

Here is a collection of notes I made during the autumn of 2009 - the period when my son's escalating eating disorder was beginning to get more serious. Some of these are what I posted on a forum at the time (not the Around the Dinner Table Forum; I hadn't yet discovered that.) I've pasted it in here as an example of how I thought we could possibly 'fix' the eating disorder early on - and also to show how he was changing. I think this must have been in the November because it talks about a referral being underway.

Processing all the anger using Eye Movement Desensitization and Reprocessing (EMDR) therapy

Over the last couple of Eye Movement Desensitisation and Reprocessing (EMDR) therapy sessions, we've been attempting to process all the anger relating to that period between September 2009 and January 2010 - the period that starts with our first visit to the GP followed by several more visits to the GP in an attempt to get my son's escalating eating disorder diagnosed and treated. There is a heck of a lot of anger inside me - and I can feel it welling up now as I write this blog post today.

I am angry with the GP for not diagnosing an eating disorder, failing to inform me about treatment for eating disorders and failing to refer my son urgently for eating disorder treatment. I am angry with the NHS for putting my son on a massive waiting list for eating disorder treatment. I am angry with the hospital (where my son was admitted in the January when his pulse plummeted to 29bpm) for not recognising the link between an eating disorder and a slow pulse rate (Bradycardia) and also for not understanding that it was critical that my son ate food while he was in hospital. And I am also angry with myself.

Doing a talk for educators / school staff? Here's a link to my recent presentation.

A few months ago I did a talk about eating disorders to staff at my son's old school. I adapted the PowerPoint presentation I'd used for parents at an eating disorders conference in Edinburgh earlier in the year (Eating disorders are not just a 'girl thing'). I know that many parents of young people with, or recovered from, an eating disorder do talks at schools, colleges, universities and other educational institutions, as do former eating disorder sufferers themselves. So I've uploaded a PDF version of the school talk I did (slides only, not the script, I will upload that at a later date when I get around to it). It's far from perfect (and makes massive use of these fantastic PowerPoint tips for the visuals), but it may give you some ideas / inspiration??

Click here for my PowerPoint presentation as a PDF.

The thaw continues... positive news!!

The following is an edit of a comment I added to my Around The Dinner Table forum post about PTSD in parents and carers after the eating disorder has gone:

I must say that EMDR, administered and monitored properly, seems to be doing the trick. It is evidence-based. At first I was mega sceptical - it sounded like some kind of weird mumbo jumbo technique, but it does work! 

A week of moving mountains!

This week I have felt sooooo much better. I am feeling again. I have more motivation. I just feel free, like I've pushed my way out of a dark room and into the spring sunlight. I've done things I've found impossible to do over the past months: I've blogged, I've agreed to go away on a long weekend break with my husband (rather than heading for the safety of the back bedroom!), I've done some cooking, I've even made big inroads into reigniting my freelancing business after not being able to face work for months. I've also felt calmer, deep down inside which is where it's so important - the place where I was constantly anxious and on 'red alert'. My sleep has been more refreshing. Yes, I've still had nightmares unfortunately and I am still shouting in my sleep, but we're talking small steps, and this week has definitely been a move in the right direction.

Progress - self-help to get me through the PTSD

I am reading 2 books simultaneously, both by world-leading experts and pioneers of research, development and treatment of PTSD and its cousin C-PTSD (Complex Post-Traumatic Stress Disorder - which I am currently suffering from, triggered by the years of battling to get my son through his eating disorder). One is Professor Gordon Turnbulls Trauma - From Lockerbie to 7/7: How trauma affects our minds and how we fight back and the other is Bessel van der Kolk's The Body Keeps the Score: Mind, Brain and Body in the Transformation of Trauma. Obviously, with something like trauma, no two causes are the same. Also, in the second book, there is a lot of emphasis on childhood trauma and abuse. But the point is that, regardless of the cause of the trauma reaction, the symptoms and treatments of PTSD and C-PTSD are very similar.

'Processing' five crucial months in Autumn/Winter 2009/10

Something that's been coming to the surface loud and clear over the past week or so is the anger, helplessness and powerlessness I felt during the months from September 2009 to the end of January 2010 when we were trying to get my son diagnosed and treated for his escalating anorexia. This helplessness and panic has come across in my nightmares as well as in the daytime, which is kind of strange because I've been feeling pretty numb at the same time.

And now it's time to fix me!

I've been blogging and it's been difficult (because of the C-PTSD which tends to make me panic at the prospect of doing 'big things' and retreat), but I've made myself do it. Taking a tip from the Recovery Contract which my son and I did to help him through the final years of his eating disorder, I've drawn up a list of challenges and am rewarding myself every time I do one of them. £1 goes into my piggy bank to go towards a self-soothe activity, probably a fully-body massage.

Post-eating-disorder - a definite shift for the better in my son

Anyone who's been in my situation, as the parent of a young person recovering / recovered from an eating disorder, will know: reporting something like this feels a little like 'tempting fate'. However here we go... Since the early summer or even earlier, I've noticed a definite shift in my son. A shift for the better. A shift that's pushed him over that '99.9-per-cent recovered' mark that I've found myself referring to over the last couple of years. A shift that has pushed his eating habits into the ranks of the 'normal' and his appearance from 'still on the thin side' to absolutely fine. A shift that has lifted a huge weight off my shoulders as I worried about relapse and / or that tiny remnants of his eating disorder may still remain.

Textbook case of Complex Post-Traumatic Stress Disorder (C-PTSD)

I've been busy reading up on Complex Post-Traumatic Stress Disorder (C-PTSD) - "a type of post-traumatic stress that results more from prolonged stress than it does from one-defining, life-threatening event" and how it differs from 'Simple' Post-Traumatic Stress Disorder (PTSD). Although there is overlap, C-PTSD symptoms are slightly different - which is good news for me as, for some time, I struggled to understand why my particular brand of PTSD wasn't a textbook case. Take my nightmares, for example, and flashbacks, neither of which are visual carbon-copies of the actual trauma itself, more 'representations'.

"What you need to do to fix it is..." says my husband, helpfully...

"What you need," he said (having just returned from 10 days on the Goan coast), "is a holiday. We'll fly to Goa and you can spend a couple of weeks relaxing on the beach, maybe have a massage or do some yoga... That should fix the PTSD." "No, it doesn't work like that!" I explained for the Nth time running. But at least his 'helpful advice' for curing PTSD is better than: "Snap out of it / wake up and smell the coffee / get a life / there are people far worse off than you." At least he doesn't say that kind of thing.

Example of a flashback nightmare-in-disguise

Last night I was kept awake by Bonfire Night revellers until 3am. Yet from 3am onwards I managed to squeeze in 3 nightmares: (1) a Pure Evil nightmare where a serial murderer is on the loose, (2) a 'moving house' nightmare (regular anxiety-generated theme) where the removal men are about to arrive but I haven't packed anything and keep finding things that need packing, have run out of boxes, etc etc and don't actually WANT to move house in the first place, and (3) an example of a flashback nightmare-in-disguise. Flashbacks - and flashback nightmares - are a classic symptom of PTSD. However my flashback nightmares have always been slightly different from the 'textbook' version.

Who we were and who we are now

Seven years ago my life began to change in a way I could never in my wildest and most frightening nightmares have imagined. My 15-year old son was hurtling downhill into anorexia nervosa and getting worse by the day... hour... minute. The medical profession wasn't listening to me; after having finally got a referral from our GP for my son to be treated for his eating disorder we were waiting for a reply from CAMHS (Child & Adolescent Mental Health Services). I expected that reply to come by return, but it would be another three weeks or so before we would hear anything. And even then it was only to be told that my son was being put on a waiting list and it could be 18-22 weeks before treatment for his eating disorder began. It was the start of years of battling to get my son well again: battling with the illness and battling with the medical professionals.

But what of the 'me' I'd been before?

A blog post I never published while suffering from nightmares

I came across this draft blog post which I never published - from April 2016, on the subject of nightmares and lack of progress from the professional therapy I'd been undergoing. Really, it's as true seven months on as it was then. The difference, though, is that I don't feel quite so helpless and I'll tell you why in another post very soon, once I've 'tested the water' so to speak because I don't want this to be another "This is it, I feel soooo much better..." (end of 2nd paragraph). In the meantime, here is that draft post from mid April 2016:

One small step at a time - progress!

This morning the cat woke me up from my slumbers demanding to be fed and I was abruptly jetpropelled from the land of dreaming to the real world. I was dreaming. Not a nightmare, but a dream. Some paper had been blown off my desk in the breeze and Shirley ('Sheila', the school nurse in my book) picked it up and read it. I was busy explaining to her that, although not brilliant, this was the first piece of creative writing that I'd been able to put together for MONTHS, if not YEARS, and that it had been really difficult to write, yet easy in a way, as that part of my brain felt as if it was thawing from the ice of numbness, dissociation and general deer-in-the-headlights inability to do very much except knit.