When your concerns that your son or daughter is developing an eating disorder aren't being taken seriously

The thing is, we parents are unique. We know our son or daughter better than anyone else in the universe. We have lived with them since the day they were born, and for the nine months beforehand. We have watched them develop and change at every stage of their young lives. So if things start to go wrong and the alarm bells begin to ring inside our heads, our unique sixth sense picks up on it and we begin to worry.

Shaking hands with his old school teachers / rugby coaches

Last year I didn't do anything on Christmas Eve; I was in the throes of a C-PTSD attack. But this year Ben and I actually made it to the annual carol service which is held in the school chapel every Christmas Eve. We've attended it every year since 2005 (except for last year and one year when it was cancelled due to snow), even through the eating disorder years. This year was the first time, since the terrible Christmas of 2009 (when Ben was roller coasting into anorexia), that I haven't felt triggered in some way.

"Is today proving that I'm fully recovered from the eating disorder?" said Ben on Christmas Day

"Is today proving that I'm fully recovered from the eating disorder?" said Ben yesterday (Christmas Day) evening. I gave him a massive hug in a response. Really and truly if you had been a fly on the wall yesterday, nothing in Ben's behaviour would have hinted at any history of anorexia. Ben enthusiastically devoured more than one helping of Christmas dinner followed by a couple of helpings of Christmas pudding, white sauce and Christmas ice cream - and continued to snack for the rest of the day.

'Twas the night after Christmas and all through Bev's head, everything was stirring and about to kick off big-style... Delayed PTSD panic attacks after Christmas.

I know from experience that Christmas / the Holidays can be a tricky time for parents of young people with eating disorders and so I very much hope that the eating disorder didn't interfere too much with your festivities. I know how distressing it can be to watch the world going on around you, preparing for Christmas just like any other year, while, inside the house, the eating disorder is running riot. I was "there" at Christmas 2009, 2010, 2011 and, to some extent, 2012.

Following those years I've battled with my own demons at Christmas thanks to C-PTSD (Complex / Chronic Post Traumatic Stress Disorder). The worst C-PTSD Christmas attack was last year when I couldn't do anything. No cards, no carols, no Christmas Eve carol service and - if I hadn't made myself get out of bed and "just get on with it" - no Christmas Day. The 2016 C-PTSD attack took me by complete surprise and just goes to show how you can't always control what the body / brain needs to do.

What a contrast to the solitary eating disorder years...

Late yesterday evening we finally managed to pin Ben down to give him his birthday presents! Ben was 24 yesterday and had spent the past 24+ hours partying with his friends, both old and new. After dropping off the final friend at their house, he popped into the supermarket and returned with a feast of party food which we ate together in front of the fire and TV after handing Ben his birthday presents.

Mourning the "lost years"...

Ben feels a deep, deep sadness at the way the anorexia stole so many years out of his life - and out of our lives, too. There's a real sense of mourning the "lost years": the years from 2009 onwards. He hates the way the eating disorder isolated him from his friends and all the fun things he could have done during those last three years at school. Although he still sees his old school friends on occasions (like tonight, for instance), it's nothing like it used to be, with Ben at the centre of things. He still feels that his friends treat him as "different" and he hates this.

"I should have been able to fix the anorexia" Ben said yesterday

I was just about to cancel Christmas due to the all-pervading sense of gloom in our household when Ben walked into the room and began to talk about what's been bothering him. Yes, he suffers from depression (we already know that and he's on a low dose of anti-depressants) and we also wonder whether he may have PTSD. After all, why wouldn't he suffer from it? He went through the prolonged trauma just like we did. However we've both decided to wait for an official diagnosis and then take it from there. He has agreed to do whatever is required to help him manage it, whether that's medication or therapy - or a combination of the two.

Hopefully things will move in the right direction

Yesterday Ben self-referred himself to our local NHS mental health team - I'd told him that he needs to get properly and accurately diagnosed so that he can seek the right help, whether that's medication or therapy. Although, as I said before, there are still sticking points with Ben's reluctance to give up calorie counting and insistence on going for diet meals on the (rare) occasions we don't cook at home. But I do believe that he isn't going backwards as far as the eating disorder goes. I believe that the other mental health issues (Aspergers? PTSD? Bi-Polar?) are separate problems. Having said that, I am keeping my eye firmly on the ball.

The questions I don't have the answer to. Do you?

What constitutes full and absolute recovery from an eating disorder? Can anyone ever fully recover from anorexia without the risk of relapse? How many "recovered" individuals still count calories and control their food intake, albeit while eating enough to put on weight and / or maintain? Can anyone ever lose the fear of "getting fat", especially if they continue to put on weight? Can anyone ever be shot of the so-called co-morbid mental health issues like depression, Aspergers, bi-polar and so on? Is there anyone on this planet who is completely symptom-free of any of these things? And, if so, is that what constitutes full recovery from anorexia? Should we never be talking about "recovery" from anorexia, rather "remission"?

A bit of a tricky one, this...

For so very long I claimed that my son was anything ranging from 95% to 99.99% recovered from the eating disorder that emerged in 2009, was treated between 2010 and 2012, and then self-managed from then onwards after discarding various private therapists. Or even that my son was / is "in remission".

Two meltdowns in one day...

Ben was in a heck of a mood all of yesterday - a true 'downer'. The first meltdown was at lunchtime and the second in the evening. I didn't even mention the diet meal from the weekend until part-way through what ended up as a shouting match between him and me. He insisted the diet meal choice wasn't anything to do with any of this. (I'll put that into the 'pending' file inside my head for now as there's only so much I can deal with at once...)

Good news / Bad news... why I've got mixed feelings this Monday morning

First the Good News... Before the anorexia hijacked my son's life, Ben was at the centre of a fabulous circle of friends. Ben's birthday is in December and he'd get his friends round for a two-night sleepover with food and a cinema trip squeezed in between. It was a two-night event because Ben had so many friends that we simply couldn't get them all into his room. So half would come on the Friday night and swap with the other half for the Saturday night.

Is this blog actually of any use in the wider scheme of things, I wonder...

Ever get the feeling that you are a tiny drop in a massive ocean? Yesterday, while I was trawling around the internet for the latest news on eating disorders, it suddenly hit me that - year upon year - we read reports about avoidable failures in eating disorder treatment, promised funding that never seems to materialise at grass roots level, failures of governments to take eating disorders seriously, media interest in eating disorders at times like Eating Disorders Awareness Week but at no other time, and - worst of all - deaths that should never have been allowed to happen.

Talking with other parents that 'get it' is so helpful and reassuring, in this case our battles with C-PTSD

Yesterday I met up with a dear friend who I originally 'met' through this blog. Like me, she had a teen with anorexia, and her experience of an eating disorder in the family was very similar to mine. So we hit it off right away when we initially corresponded by email and, later, met up in person.

My son and her daughter are now thankfully in remission from anorexia ('remission' or 'recovery'? I feel like it's tempting fate to say 'recovery'...) - and now our experiences are overlapping again. We are both suffering from PTSD (Post-Traumatic Stress Disorder) as the result of those years of battling to get our children through their eating disorder.

In this day and age there is no reason for any GP NOT to recognise the signs of an eating disorder

From having spoken to other families, it seems that it's a case of 'luck of the draw' as to whether you see a GP that understands eating disorders or a GP that doesn't. This report from the Independent newspaper backs up this assumption.

When I took my son to be diagnosed back in Autumn 2009, the GP didn't recognise the signs of an eating disorder. While putting together my book Anorexia came to visit - Families talk about how an eating disorder invaded their lives, I did my own research about GPs and eating disorders. Our local GP said she "probably had two lectures" on mental health and eating disorders as a medical student. Another medical student specialising in psychiatry was surprised to learn that males get eating disorders. And a representative from the RCGP told me that: "Currently only around 50-per-cent of doctors-in-training for general practice have an opportunity to undertake specialist-led mental health or in child health training placements".

The podcast that every GP needs to listen to. Full. Stop.

Dr Erin Parks of the UC San Diego Eating Disorder Center (recognised as a global centre of excellent in eating disorder treatment and research) has produced a podcast that every GP needs to listen to - or indeed anyone who wants to know the truth about eating disorders, including the estimated percentage of males suffering from eating disorders in the 21st century.

Turning stuff on its head, the "myth of motivation in adolescent eating disorder recovery"

I clicked onto this article today and it made me laugh in a kind of grim ironic sort of way. The author talks about "how I’ve sat with many worried parents, desperate to do what is right for their adolescent child, who say, 'I really want her to get help, but it’s just not the right time. She has to want to get better.'". It goes on to explain why parents need to learn that eating disorders are serious brain illnesses and the reasons why none of us can simply can't wait for them to "want to get better". Indeed why, waiting for them to "want to recover" is a dangerous myth.

A catalogue of disgraceful and avoidable failings that led to this tragic outcome

My mum pointed out this newspaper report today about a teen who was "left to starve in her university flat". Yet again we have what appears to be an avoidable death from a deadly illness - anorexia - that seems to have come about through a catalogue of failings by the NHS.

"Life stops until you eat," say the eating disorder experts

It was F.E.A.S.T., I think, that coined the excellent phrase: "Life stops until you eat" - a phrase which I've heard many, many times on the F.E.A.S.T. forum, Around The Dinner Table, when it comes to getting your eating disordered child to eat. On Tuesday, the US-based Kartini Clinic's Dr Julie O'Toole blogged about the same topic. The topic talks about how to continue to get your child to eat and put on weight once they've been discharged from formal treatment for their eating disorder. In a nutshell, whenever they resist, you tell them that "Life stops until you eat". As Dr O'Toole says: "No friends, no going out, no cell phone, no parties, no car, no clothes shopping, no college visits. The first job is to nourish the body and all else comes after that." Indeed the focus of Family Based Therapy (FBT) as an evidenced-based model for the treatment of anorexia in adolescents is, first and foremost, "Life stops until you eat".

Trying to describe why this is Continuous Traumatic Stress Disorder, and wondering what can be done about it...

Each of the therapists I had for my (what I assumed was and what was diagnosed as) PTSD (Post-Traumatic Stress Disorder) attempted to get me to believe and accept that my son's eating disorder, and all the horrors that came with it, was in the past. The idea was to 'process' the nightmarish memories so my brain began to accept that it was history and I could start to live a post-eating-disorder life free of nightmares, anxiety, fear, dread and all the other stuff that was causing nasty symptoms and making me feel 'strange' and 'trapped'.

Again, on the topic of PTSD, why PTSD therapy will never work for parents like us

I've been feeling frustrated that, after all the therapy sessions and treatment models I have received over the past few years for Post Traumatic Stress Disorder (PTSD), I still feel the way I do. So I began googling and came across something called Continuous Traumatic Stress Disorder (CTSD).

Sometimes I can talk or write about eating disorders and sometimes I can't...

It's funny how sometimes I can visit the Around The Dinner Table Forum (for parents of young people with eating disorders) and blog here, and sometimes I just can't. Sometimes I can talk about what we call 'the ED years' (the years my son was suffering from anorexia) and sometimes I just can't. And sometimes I can update my eating disorders website and sometimes I just can't.