Thursday 23 March 2017

Parents of eating disorder victims - the Biggest Fear of All

As you know I'm having EMDR (Eye Movement Desensitisation and Reprocessing) therapy for my Complex Post Traumatic Stress (C-PTSD). Unfortunately I've had to go private as the NHS is only permitted to offer 16 or so sessions and if you're not recovered in that time, then... well... to put it bluntly... you're out on your ear. Yesterday I came to the session with a whole raft of triggers that had occurred since the last time I was there (a fortnight before). Initially after our last session I'd felt elated and light - as if a great big thick cloud had been lifted and the sun had started to come in. I really felt that this was it: the EMDR was working - it was a miracle!

This good feeling lasted around 24 hours until the first trigger (taking my son to an unknown cafe for lunch and him dithering over the menu) pinged me right back into the hyper-anxiety and arousal of the PTSD.

A few days later I had the second trigger: taking my mum to see the emergency GP who turned out to be one of the two GPs I saw when trying to get my son diagnosed and referred for his eating disorder back in Autumn 2009. I found myself sitting in the same chair in the same surgery and - ping! - my mind was 'back there' to the day when Ben stormed out of the surgery ("I don't know why I'm f***ing here - there's NOTHING WRONG WITH ME!") and flew through the streets back to the house while I sat there helpless, asking the GP what I should do.

The GP had no answers.

The third trigger was Rosie's death which I first heard about a week ago today. This terribly tragic event reinforced my Greatest Ever Fear which is that eating disorders kill.

Even after years of roller-coasting between remission and relapse, eating disorders can kill. And suicide is one of the most common ways that an eating disorder claims its victim.

Rosie's tragic death affected all of us parents (but of course nothing remotely like it has affected her family).

Not only is another eating disorder related death one death too many, but this was our friend K's beautiful daughter. K, who had struggled for so many years to help her much-loved child to recover.

On top of this it reinforced our ice-cold fear that the same could easily happen to us.

Many of us live with the constant fear that our own son or daughter could take his or her life.

My son used to talk about suicide long after his recovery from anorexia was well underway.

Throughout his first year at university he'd talk about suicide fairly regularly. And each time it would plunge me back into that ice-cold fear, especially as he was now living some 40 miles away from us.

The problem with this fear was and is that, even after the eating disorder is in remission, the constant spectre of suicide hangs over a family.

I really don't think it will ever go away.

So Rosie's death affected other parents for two reasons: first and foremost (and by far the most important), it was our dear friend K's much-loved daughter; secondly, it reinforced the knowledge that an eating disorder related death could so easily happen to us too.

Earlier this week one mother told me how, on admission to hospital, the doctors told her that her daughter was "one day away" from death.

Then there was the other mum who collared me after my talk at the 2016 SEDIG (Scottish Eating Disorders Interest Group) eating disorder conference to say: "Your story could be a carbon copy of mine but for one thing. Your son recovered. Mine didn't, he took his own life."

For those of us parents who go on to develop trauma-related issues like PTSD, this constant and very real fear is difficult to 'process'. The problem is that it's part of the past - certainly. But it's also very much part of our present and, possibly, our future too.

How can we put to bed a fear that is still very much with us and which may remain with us for many years, perhaps even for the rest of our lives?

The fear that my son could take his own life has and is my Greatest Ever Fear. Remember how, during that terrible summer of 2010 as my son slipped further and further into his all-encompassing anorexia, my mind kind of clunked and shifted down several notches to a twilight world where it became a case of 'when' and not 'if'.

You almost find yourself 'adjusting' (which isn't the right word at all) to the fact that your child may, or indeed will, die.

Having seen what an eating disorder can do, you go through several stages where you, as the parent, lose all hope.

Especially when the treatment your child is receiving for their eating disorder appears to be making them worse and not better.

And when you get to the stage where you go to bed every single night wondering if your child will still be alive the following morning.

The night before last I had the Mother of all Nightmares where I was desperately trying to stop Ben from taking his own life. My pleas were falling on deaf ears. He was intent on killing himself, no matter what. I was pleading and pleading.

On and on it went.

This nightmare was so vivid and distressing that, on waking, I found myself reaching for my 'emergency supply' of Diazepam just to calm me down. (I rarely if ever take the stuff because it can be addictive; it was prescribed a while ago and I keep it handy for 'emergencies'.)

As a result I wasn't in a very good place when I turned up for my EMDR session yesterday afternoon and I'm not entirely sure the therapy was any help.

But we shall see.

I am still confident that it may work and help me to process those memories that are in the past.

However, as my Biggest Ever Fear will never leave me, does it actually have any real chance of being truly effective?

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