I know what parents who are still going through the hell of an eating disorder might say: "Think yourself chuffing lucky, Bev, that you're through this. I'd give my right arm to be shot of this deadly thing that's hi-jacked our family." But for those parents out there who are stuck in my situation, I'd like to describe a little of what's been going on inside my head.
For several years the eating disorder dominated our lives. Totally. 24/7/365. On top of this was the daily fear of death. A real fear. A justified fear. Eating disorders kill more people than any other mental illness and our child could be next. Easily. I know this because a friend's daughter took her life earlier this year. The eating disorder 'demons' became too hard for her to bear.
On top of this was the need to be constantly vigilant. And I mean vigilant. Not just 'on the look out' for faked eating or dealing with tantrums, but being on 24/7 RED ALERT waiting for the next primeval sounding scream or thud as my son bashed his skull against a brick wall.
And all the other horrific stuff that went on, round the clock. Stuff that was way, way, way beyond the realms of the 'normal'. I can't go into detail here, it's too triggering for me, so let's get back to the point of this post...
The closest I can come to describe this is what it must be like for a soldier to return from active duty then leave the army and join 'civvy street'.
The horrific thing that dominated your life 24/7 and defined you as a human being (because of the nature of it dominating your life 24/7 for YEARS) is no longer there.
But what's in its place?
Some bland world where people ask you if you're "going anywhere nice?" when you mention a planned holiday. Or ask you how you are.
Ha ha, if you REALLY told them how you are they'd run a mile.
The rules of the game are that you say: "I'm fine, thanks" or the now more popular American: "I'm good, thanks".
Never ever say "Well I'm feeling really sh!t because the horrific thing that defined me for so many years is gone yet I can't adjust to what's in its place. It is so very long since I was 'me' - the 'real me' before the eating disorder - that I have forgotten who that was. And I've changed since then. Because of my son's anorexia and also just because people DO change over time. So do circumstances. And I no longer know who I am or where I fit in."
The thing that defined me - the eating disorder - triggers me and the PTSD (which I am currently receiving £60-a-week EMDR therapy for) comes hurtling back into my head.
Back in 2012 as my son began to recover from his eating disorder, I felt strongly that my role was to help other parents who were still in the thick of it - by blogging here, by writing articles and books, by appearing in the media and giving talks. That gave me a purpose. And it could STILL give me a purpose. Indeed it SHOULD, rather than running away to hide because, 9 times out of 10, anything to do with eating disorders just sets off the PTSD symptoms, leaving me in a panic and depressed.
So I find it darned hard to do the one thing that could define me in a post-eating-disorder world: the blogging, the writing, etc etc. And most of the people I know and love these days are people I've met along the eating disorder journey, mainly other parents.
So, without the eating disorder, who are my friends?
Which leaves me feeling incredibly isolated and alone because I just can't deal with bland small-talk about unimportant things in life. Not when I've been through something as hellish and all-consuming as an eating disorder in the family.
It's a Catch 22 situation where the post-eating disorder 'reason for being' - advocating for better awareness of and treatment for eating disorders - sets off extreme feelings of panic and depression. Ditto the dear friends I've met along this journey.
The obvious solution would be to 'move on' to pastures new. But what are those pastures new? Any pastures new would be so very bland and 'not me'. I am the person who blogs about eating disorders and uses the experiences with my son to help others. Yet this very thing 'pings' me back into a massive panic and feeling oh so low. The 'I can't get out of bed in the morning before 11am' kind of low. The 'I can't be bothered to shower, get dressed properly, do my hair or put on makeup' kind of low. The 'let's have another duvet day' or pig out on cupcakes kind of low...
I've been reading an article about what not to say to parents of young people with eating disorders. Well, here's what you shouldn't say to parents who are trying to acclimatise themselves in a post-eating-disorder-world and find a meaningful role:
"Cheer up, there are people who are worse off than you"... "Think yourself lucky! Your son recovered!"... "Go out and meet people. Join a club. Or a charity." ... "Go on a relaxing beach holiday" ... "Pull yourself together" ... "Get in touch with your old friends" ... "Stop feeling sorry for yourself" ... "Make yourself do stuff" .... "Do some exercise" ... "Get out in the spring sunshine" ... "You know, sometimes I think you don't want to 'let go' of the eating disorder"...
And so on and so forth.
Or they just ignore it as if it never took place. Shit happens. Life goes on.
It's a tricky situation and I haven't found the answer yet.