Boys get eating disorders, too, just like girls. In 2009 Bev Mattocks Osborne's 15-year old son developed anorexia. Now, aged 23 and studying for a Masters Degree at university, he is thankfully recovered. This blog is her story. Bev is a 57-year old freelance copywriter lives in Yorkshire, UK.
As I said to my H last night: "I would have been surprised if (a) the NHS had offered me further help for C-PTSD, and (b) if that help had been effective evidence-based treatment over a sufficient period of time for me to recover rather than being discharged after a handful of sessions way, way too soon. It shouldn't be like this, for anyone suffering from mental health issues whether that's an eating disorder like anorexia or bulimia or a condition like Complex Post-Traumatic Stress Disorder.
What is the point of (a) letting people get worse before they're treated and / or (b) discharging them far too soon because 'the powers that be' are only offering a limited handful of sessions, bearing in mind that the first few sessions are always going to be about getting to know the patient, explaining the legalities and also how the treatment will pan out.
Aside from making people suffer needlessly over long periods, or even causing fatalities if someone takes their own life or dies from, say, a complication of an eating disorder, it's a massive waste of money.
Another massive waste of money, and also potentially deadly, is for mental health professionals NOT to be up to date with the latest evidence-based treatment and to continue with older defunct methods, as was the case with my son's eating disorder treatment.
But most important of all, to you... to us... is that we're having to fight the very people who are supposed to be helping us!
At a time when we're fighting other stuff - like trying desperately to keep our children alive while a deadly eating disorder seeks to destroy them.
Or simply at a time when we, as parents, are trying to claw back something resembling the peace of mind we had before any of this happened.
As my H said to me last night: "This has happened to us twice now. First with you having to fight to get eating disorder treatment for Ben and now with you having to fight to get C-PTSD treatment for yourself - for a condition that, ironically, was partly caused by the former fight!!"
I feel as if I've been fighting the NHS for 10 years.
I have been fighting the NHS for 10 years.
And I no longer trust them an inch.
In all truth, I would have found it difficult to continue with NHS treatment for C-PTSD because part of my condition is about being SO VERY ANGRY with the NHS, the very people who would have been treating me and inviting me to 'open up' and talk about stuff.
In my C-PTSD mind, it's like opening up to the enemy. I want to thump them rather than 'open up' to them!!!
And now that I've been discharged because it's felt that no further C-PTSD treatment would be helpful while I'm still being triggered into flashback mode, my anger has reached boiling point.
How many times do I have to say that flashbacks are a major symptom of C-PTSD and PTSD!!!
As my H said last night, it's like someone being discharged from treatment for, say, cancer because they have developed a further suspicious lump - come back when the lump is gone and we may (or may not) consider treating you again...
Hang on a mo, NHS... Let's see if I've got this right from the letter I've received this morning... Because I still have most of the Complex (or Chronic) Post-Traumatic Stress Disorder (C-PTSD) symptoms, despite having had 'three full sessions of therapy' over the years, yet I still 'feel the same', and because I still get 'triggered by Ben' (not his fault, just that certain noises, actions, etc trigger me because I have C-PTSD as a result of the years spent battling with his anorexia and, ironically, the NHS), NHS mental health services do 'not feel further therapy would be helpful at this point' and are therefore 'discharging [me] from the service'.
Er... NHS... I'm being TRIGGERED because being TRIGGERED into flashbacks is a primary symptom of both PTSD (Post-Traumatic Stress Disorder) and C-PTSD?
Past therapy has been partly effective but there's still a lot of work to do, after all this is C-PTSD, but it almost implies that I didn't recover fast enough? Or didn't engage with trauma therapy?
In the letter (a cc copy of a letter sent to my GP), they do understand some of the problems I have been experiencing experiencing, but they also say the above which is kind of weird...
It's absolutely BARKING MAD that they are discharging me because they feel further therapy wouldn't be helpful because I am still being triggered into flashback-mode!
An example would be if Ben suddenly cries out from his room - e.g. if he's scored in a computer game - or crashes around - e.g. crashing downstairs to answer the door to a friend - my mind flips me back to the many, many times when such sounds heralded an all-too-different result as his eating disorder forced him to bang his head against a wall or howl like a wild animal.
I get triggered.
And it's horrible.
It's not Ben's fault and I can't expect a young man to creep around the house in silence, treading on eggshells in case he triggers flashbacks.
Or for him to disappear out of my life because he - or, more accurately, his former illness: anorexia - risks triggering these flashbacks.
Because, let's face it, flashbacks are what you get when you have a trauma-related condition like PTSD or C-PTSD. It is a SYMPTOM, goddammit!! It's the first thing that people think about when talking about PTSD.
Yet the NHS don't feel that any further treatment would be 'helpful' to me 'at this point' BECAUSE I AM GETTING TRIGGERED into flashbacks!!
A bit revolving-doors-like, that is. Catch 22 and all that...
So tough luck, I'm spat out of the system and left to fend for myself. They say that 'it may be that [I] would benefit from a more explorative approach for example psychodynamic therapy once [my] son leaves home'. (In other words, when I'm not being triggered - but, oh! - I would still have him in my life for god's sake, he's my son and he can't help being a trigger, poor soul!!!)
For now they suggest I might consider self-referring to the charity MIND or a counselling service.
I don't need counselling, counselling doesn't do any good, I need evidence-based treatment for C-PTSD for gods sake!
10 years is a milestone in a life and, in our family, the past 10 years brought with them a horror that we couldn't have imagined in our worst nightmares. 10 years ago this spring, in 2009, my son began to exhibit worrying symptoms, although back then we had no idea that these were a prelude to a full-blown eating disorder like anorexia. Of course we didn't. We had no idea that boys get eating disorders just like girls.
There was the instance when we drove down to Kent to celebrate Paul's sister's birthday. It was a last-minute decision. Ben had a friend staying with us, so the friend came too. I remember noticing that Ben didn't eat much, if any, of the 'unhealthy' buffet food: sausage rolls, quiche, vol-au-vents, crisps, that kind of thing. On the return journey we stopped off at a motorway service station. While the friend, Paul and I tucked into fried chicken, Ben went off in search of a 'healthier' sandwich.
Then there was the other instance when we headed down to Devon for Easter. Ben was getting increasingly obsessed with his appearance. He was getting snappy and his mood was low. We just put it down to teenage angst.
At the time I wrote a blog for the Weston Mercury newspaper (a local newspaper in Weston-Super-Mare). I described Ben's moodiness on the day we stopped off at Weston for lunch. Here's what I wrote which, looking back 10 years later, seems eerily prophetic...
Meltdown at the Marine Lake
In case you missed it, there was a serious emergency going on by the Marine Lake at Half Term. 15-year old Ben wasn't just having a Bad Hair Day; he was having a Total Image Meltdown...
So there was NO WAY he was getting out of the car when we arrived in Weston from Yorkshire.
His hair was all wrong. Just as tragic, he'd left his rock star sunglasses at home. His (positively concave) abs were "fat" and the face-wash he'd pinched off me had given him spots.
"You look wonderful", I sighed for the umpteenth time as he carefully positioned each expensive 'putty' covered hair into place.
"I beg to differ", he said in a condescending way, pouting his lips in the car mirror and scrutinising his face from each side.
Honestly, it's worse than having a daughter. He spends more time getting ready in the morning than I ever did. And in my day we didn't have hair straighteners, ionic hairdryers and half the goo, wax, putty, gunk and gel you can get these days.
It was so much easier when Ben was little. Back then he was content with a quick short back and sides at the barbers. A quick rub with the towel, a free lollipop and he was as happy as Larry. Or if funds were tight, a swift once-over with his dad's electric clippers.
Now he's taken a liking to the rather pricey hair salon I use. Even the 'graduate stylist' costs a sharp-intake-of-breath-inducing £26... Add on the tub of hair goo and you don'’t get much change from £35.
The only consolation is that hubby Paul's hair costs absolutely nothing to maintain. He’s as bald as a coot.
Anyway, walking towards the Marine Lake Ben was taking a critical sideways glance into every window.
He was pinching bits of "fat" on his stomach and checking if his (skinny) bum looked "too big"... "Do you think I'm good looking?" he asked doubtfully.
"I think you look wonderful!" I replied brightly, worrying he may be bordering on the anorexic. But then remembering how he enthusiastically cleared his plate the evening before and feeling reassured it was "just a phase".
"I'm going to dye my hair black", he said. "Oh, and I'm planning to become a Buddhist."
But he wasn't listening; he was busy texting his mates. "They've gone into Leeds shopping", he said, hating being stuck with us in Weston on a Bad Image Day and scowling as Paul takes a photo of him and me on the beach as we walk towards the Pier.
The one that he later decided looked cool enough to put on Facebook, despite the Image Crisis. Without me, of course. I was airbrushed out.
10 years ago this coming autumn I was cramming up on eating disorders and evidence-based treatment in order to fight for my 15-year old son to get successful treatment for his escalating anorexia. I quickly realised that the NHS wasn't going to rush this thing through despite the fact that I was rapidly learning how deadly an eating disorder can be, especially if left untreated for a lengthy period. It was only when, in the early spring that followed, my son's pulse plummeted to 29bpm and he was rushed into hospital, that NHS mental health services finally agreed to see him for eating disorder treatment. In other words, it appeared that his life had to be at risk for anything to be done.
Over the last months I've been trying to get NHS treatment for Complex (or Chronic) Post-Traumatic Stress Disorder (C-PTSD) which developed as a result of the horrifying years spent fighting for and caring for my son and his anorexia. I have also been cramming up on C-PTSD and evidence-based treatment, just as I did for my son's anorexia.
As I've described elsewhere on this blog, I've received all manner of different treatments since I developed C-PTSD a few years ago, both NHS and private, none of which were wholly successful and the more I delved into C-PTSD the more I realised that certain elements of the treatment I'd received were never going to work for C-PTSD (which requires different and more extensive and prolonged treatment than its 'cousin' Post-Traumatic Stress Disorder (PTSD). Therapies, like CBT (Cognitive behavioural therapy) and EMDR (Eye movement desensitization and reprocessing), helped to some extent; both have been proven to be successful elements of the intricate mix of therapies that are being shown to work with C-PTSD. But they are not the whole picture. Not by any means.
So last year, following a really cr@ppy winter when I scarcely left the house and even found it difficult to get out of bed, I went back to my GP who agreed to refer me back to NHS secondary mental health services. After a long wait, I received two lengthy assessments in December. The therapists said they didn't 'have a magic wand' and it was 'up to me' to deal with this although they did say they'd arrange for some occupational therapy to ease me back into 'the real world' that I'd been AWOL from for the last 10 years, although personally I felt strongly that I hadn't yet reached that stage and I said so.
Then last week they called me and said this request had been turned down by 'the powers that be' and there was nothing more they could do for me. In other words, I was out on a limb. It was tough luck. It was as if I hadn't recovered fast enough using their therapies last time round. They said they were really sorry but these days one has to be a 'risk to oneself' to be considered for therapy.
Hmn... sounds a tad similar to what I was hearing 10 years ago...
Of course it didn't surprise me. I take all the political propaganda which the government keeps churning out of 'more and more investment in NHS mental health' with a massive pinch of salt.
After 10 years of cynicism as far as NHS mental health services go, I would be surprised if (a) I received further help, (b) that they allocated a sufficient number of sessions, and (c) that this help was evidence-based for C-PTSD. And the more I read about research into C-PTSD the more I realised just how intricate and multi-faceted C-PTSD treatment needs to be for it to stand any chance of working in the long-term.
So I am currently reading textbooks aimed at therapists - the latest global research into C-PTSD as I increasingly realise that the only person who is going to fix this thing is me. An alternative would be to use a private therapist via SKYPE, perhaps based in the States which has always been a little more clued up on trauma treatment than the UK (similar to eating disorders!) So far I haven't found a UK therapist who can help.
What is so crazy, though, is that my condition isn't unusual. Whether it's childhood abuse, military combat or prolonged exposure to traumatic events (as with people like us, parents of children with eating disorders) there must be billions of people who suffer with C-PTSD. And yet so little has been done to research into treatment that works in the long-term, relying all too often on PTSD treatment which is the tip of the iceberg when it comes to C-PTSD.
Not only this but the sheer amount of money, both private and NHS, that's being wasted on ineffective treatment is astonishing.
But of course I'm well used to that, with my history of battling for evidence-based treatment for my son's eating disorder. Does it surprise me? Does it hell.
I am well aware that I've been absent for much of the past year as I continue to battle with PTSD, chronic anxiety and depression - so this post is just to say that I am still here, guys, and that if living with an eating disorder in the family for year on year has had a damaging effect on your mental health, you are not alone!
Christmas is a couple of weeks away and here in our household, the tree is up, but it remains undecorated. I just don't have the energy to do anything about it. No Christmas cards have been sent, no presents wrapped; indeed I've only bought a couple of gifts this Christmas - and my mum is taking my H and me out for Christmas lunch, so we're pretty much going through the festive season blindfold.
Ben is spending Christmas with his girlfriend and her family (he's been seeing her for over 6 months). He's the only person in our family who's embraced the Christmas spirit this year!
2018 has seen me spend yet more money on private therapy in a bid to sort out these crippling mental health problems followed by a couple of assessments with the NHS (the same therapists I saw a couple of years back).
Unfortunately no-one knows what to do, except to say they'll recommend an occupational therapist is engaged to help me adjust to "real life" again, something I've found very difficult. These days I get out of the house rarely. I visit my elderly mum, I go to the supermarket and, if the weather permits, I get out on my bike. And that's pretty much it.
Strangely enough, though, while most tasks are punishing difficult to do, I can sit and knit for hours! I have knitted tons of stuff!!
The therapists say they're stuck; they have no solutions. They have tried a range of therapies... psychotherapy, CBT and EMDR... yet I am still unwell. They say they "can't wave a magic wand" and that it is "really up to me now".
Ah yes, but as I responded to them: "I am a natural fixer; look at how I helped my son recover from anorexia. If I could fix this thing believe me I would have done it by now or at least be well on the road to doing it."
I guess if we could all fix our own mental health problems, it would save the NHS £zillions!
The consolations are that (a) my son is well again and living his life; he has a steady job and a girlfriend plus lots of friends; these days we scarcely see him which is GOOD NEWS compared to the days when he'd be sitting on our sofa every night watching the telly with us. And (b) to just know the reasons why I got to where I am today... By being too strong for too long in unbelievably terrifying circumstances, 24/7/365, hour on hour, day on day, month on month, year on year, refusing to give up and continuing to fight.
Just like so many of us who are parents of children battling with eating disorders.
Not surprisingly, as may also be the case with you, this has taken its toll on my own mental health which has been deteriorating for a few years now.
But, hey, here I am, writing a blog post when for many months just the thought of blogging again sent me into a cold sweat of sky-high anxiety and panic.
As I said, I am a fixer. I fix things. I bash away at the same problem until I find a workable solution (sorry if that sounds a bit Brexit-ish!!) and, slowly... very slowly, I am reading through a ton of scientific proof about how the brain reacts to sustained trauma, how it 'short-circuits' and re-moulds itself and how the hormones that deal with various things change. Genes also play a part; if you're raised by naturally anxious parents you're more likely to be anxious yourself. In other words, part of it is due to my biological makeup.
A bit like an eating disorder, really.
But it is so reassuring to know that it isn't me, that it's not because I "didn't recover quickly enough" or that I have caused this thing. I didn't choose to feel like this and I can't "snap out of it" or "cheer up". If only it were that easy.
So if you're struggling to do something as "simple" as decorating the Christmas tree or even getting out of bed and emptying the dishwasher or failing to change out of your PJs day on day, you are not alone.
It is not surprising that being the parent of a child battling something as frightening and serious as an eating disorder, for so long, messes up your own head or health in some way. It would be a surprise if it didn't.
I've had a tricky 7 months since my last post. My son is fine, going from strength to strength, whereas my own mental health and PTSD has been going in the other direction and I've found it impossible to write about or face anything to do with eating disorders. I have also been referred for more therapy in an attempt to get my head sorted out and get rid of the effects of the years of trauma. In the meantime, I have started a companion blog. I've been meaning to do it for some time, but - like so many things at the moment - have found it too overwhelming. So I'm starting small, in bite size chunks. Just the odd thought that comes to mind - and, because cycling on my bike is about the only thing I can focus on these days, the focus of the blog is cycling to improve mental health. Check it out here. But be warned... there's not much on it at the moment because I'm taking things slowly...
Over the last month or so I've found it impossible to even so much as glance at anything to do with eating disorders let alone do anything useful and worthwhile. I even had to make my excuses to the January meeting of the Men Get Eating Disorders Too charity at which I am a Trustee. I seriously couldn't face anything to do with eating disorders. Nothing. Zilch. Zero. So that's why I've been keeping a bit (or a lot) of a low profile for the past few weeks.
I'm also seeing my therapist, Steve, again to try and tidy up the loose ends of the Chronic Post-Traumatic Stress Disorder (C-PTSD) although I am really not sure how much of the eating disorder related C-PTSD is still there. My therapist believes we've 'processed' most of it using EMDR but I'm not so sure.
I've also found myself in a pretty bad depression - the kind where it's difficult to get dressed or washed or put makeup on, although I've made myself do a lot of stuff over the past week and am sure I feel better for it.
It's such a wretched thing, isn't it? Eating disorders. Wretched for the individual suffering from the eating disorder and wretched for the parents or carers who have to go through it with them followed, in many cases, by some kind of PTSD as a result of the impact of sustained and extreme trauma on the brain. But, anyway, that's why I haven't been around for a while.
In the summer of 1993 I remember walking along the South-West coastal path in South Devon. I was six months pregnant and my emotions were all over the place. I remember sitting down on a bench overlooking the sea and bursting out into tears. The reason? Because the sheer responsibilities of impending motherhood had just hit me like a ton of bricks. Did I have what it would take to be a good or even reasonably good mother to the son or daughter inside me? Even an average mother? The sheer enormity of the task I was about to undertake suddenly seamed impossible. With my hormones all over the place, I burst into tears and couldn't stop.
This New Year's Eve that has just passed, I sat in our local pub with my husband, observing family groups enjoying an early-evening drink. A young father was holding his toddler, a little girl was playing with her Barbie-pink tablet and a new mother was discreetly breast-feeding her baby daughter.
Again, the enormity of the task of parenthood hit me. I could see the sheer love and care being lavished on these youngsters from parents who obviously wanted to 'get it right'. Ahead of each of these tiny human beings, these parents' much-loved children, there lay a whole lifetime.
I wondered what that lifetime would bring...
Back in 1993 when I was in tears by the sea I could never have imagined what we would end up facing some 16 years later in the summer of 2009 and subsequent summers. And autumns, winters and springs.
For us, parenthood brought with it a weight of responsibility that we could never have imagined in our wildest nightmares as the tiny baby that entered our lives in December 1993 went on to develop hideous anorexia nervosa 16 years later.
And I hoped and prayed that, for these young parents, enjoying a family get-together on New Year's Eve 2017, with 2018 just hours away, that their children would grow up happy and healthy, free of the many horrors that can come with adolescence - and as they get older.
My worry, back in 1993, was that I didn't have it in me to be a 'good mother', a task that seemed way, way beyond what I believed I was capable of doing.
But I hope that, in the years that followed and right up to the present day, I have proved to be a Good Mother. Or even a Great Mother.
But motherhood, as I came to know it during my son's teenage years and afterwards, was punishingly tough and there is no doubt that it has left me with scars as well as ageing and exhausting me.
As it has probably done to other parents reading this blog who are or have been battling with a son or daughter with an eating disorder.
For this first blog post of 2018, I wish all of my blog followers and readers an easier, more peaceful and generally better year than 2017 and / or preceding years.
And for those families from New Year's Eve, I wish for a happy, healthy future, free of all of the stuff that we have had to face as parents.