Monday, 6 February 2017

Should I be blogging about C-PTSD in a blog specifically dedicated to eating disorders in boys and young men?

Yes of course I should be for the simple reason that the latter was caused by the former - the 24/7 of caring for my son as he plummeted into and slowly emerged out of his eating disorder - anorexia - between summer 2009 (when it first became evident to me) and, probably, right up to the end of his first year at university in 2014/15 (when things began to improve quite considerably). The worst period was an 18-month stretch between October/November 2009 and Easter 2011 (when Ben and I began to implement our 'contract' which helped to turn things around). For nigh on 18 months on a daily basis... on an hourly basis... on a minute basis... I was -

  • Fighting to halt Ben's descent into an eating disorder that I quickly came to realise could very easily kill him whether through starvation, organ failure or suicide (intentional or non-intentional) - or a combination of all three.
  • Fighting against my son who was so gripped by the anorexia that he battled against our efforts to get him well as well as lying, being in denial and a load of other stuff. This is unlike practically any other potentially deadly illness.
  • Dealing with his rapidly changing and deteriorating personality as he transformed from the wonderful boy I'd known since his birth into someone I didn't recognised: mentally or physically.
  • Dealing with regular outbursts of epic proportions - round the clock. These outburst were almost always sudden and severe, often with violence and a lot of  noise (yelling, bashing, thrashing, etc).
  • Fighting to get him diagnosed and treated, then - on being told that he could be waiting 6 months for NHS treatment - frantically searching for 'stop-gap' private treatment.
  • Battling with CAMHS (his NHS treatment team - Child & Adolescent Mental Health Services) as I gradually realised that their treatment model was making him worse, not better, with the result that my husband and I felt increasingly alone and up against 'the System'.
  • Pretending that everything was OK to an outside world that didn't 'get' eating disorders and where having a child with anorexia can cause stigma and blame.
 ... and a ton of other stuff that took my stress levels to places I never thought was possible along with a constant ice-cold fear plus a paradigm shift where I slipped into a way of thinking where it was highly likely that my son would die, not unlikely. Like kind of trying to prepare myself for the worst when (not if) it came.

My experience is similar to so many other parents who have battled to get their son or daughter through an eating disorder, whether anorexia, bulimia or one of the many guises that this deadly illness can take on.

It's not surprising that these hours, days, months and years come back to haunt us in a number of ways. Some parents have suffered physical illnesses; others have suffered psychological problems like PTSD (or, more likely, its chronic 'cousin' Complex Post-Traumatic Stress Disorder - C-PTSD). Or a mix of both.

And, just as we spent all those months fighting to get our children speedy, high quality, sustained evidence-based treatment for their eating disorder, we may find ourselves fighting to get speedy, high quality, sustained evidence-based treatment for our issues, in my case C-PTSD.

This fact in itself adds an extra layer of 'flashbacks' and negative memories to C-PTSD - flashbacks to the period where we fought to get our child treated properly along with a growing lack of trust in the NHS and a feeling of hopelessness that they will never fix things. In the same way my son was discharged while he was still sick with his eating disorder - once he reached the age of 18 - I have been discharged because my time-limited C-PTSD treatment sessions have expired. Whether or not I'd recovered by that time didn't enter into the equation, I was out on my ear.

And so this extra layer is very real. Being told that "EMDR [Eye Movement Desensitization and Reprocessing] does work and it will cure your PTSD" and then being suddenly discharged because my time was up results in a whole range of memories and feelings gushing back into my head: anger, frustration, fear, hopelessness, helplessness, hatred and more.

But to return to the point of this post...

Yes, blogging about both PTSD and C-PTSD is highly relevant to a blog about parents dealing with their child's eating disorder - and the aftermath of it. In an ideal world our sons and daughters will recover from their eating disorders and we will all get on with our lives.

However - and I'd argue that this isn't at all unusual - many parents may find that those years come back to haunt them in some unpleasant way because of the effect that sustained trauma can have on the mind and body, as world-leading trauma expert Bessel van der Kolk explains in his book: The Body Keeps the Score: Mind, Brain and Body in the Transformation of Trauma.

So the two are very interrelated, which is why you will find that I am now blogging about both issues.

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