Tomorrow I begin treatment again at my local Community Eating Disorder services after over a year fending for myself. It’s safe to say ‘apprehensive’ doesn’t even come close to covering how I feel about this.
This is not my first rodeo. In fact this will be my sixth attempt with services and I dare not count how many types of treatment.
As many of you know things did not end well last time I left this particular service which has definitely tainted my view of it and made it infinitely harder to re-seek help when I desperately needed it.
The treatment I received was actually very good. I was allowed to do two full rounds of RODBT which I found incredibly useful (and has led to lasting friendships), was offered psychiatric and dietetic input and had the NICE recommend minimum 40 sessions of a front line treatment.
Bad treatment endings
However the end is where things went downhill. Initially, during my assessment, I had been told that I would not be discharged from the service until I had reached a healthy BMI (a terrifying but reassuring prospect that they wouldn’t give up on me) and I was told that my sessions could be extended ‘if necessary’.
Like I said the treatment was good, I found it helped me a lot with perspective, interpersonal relationships and a lot of the deeper roots of my disorder. I bonded well with my therapist and felt that we were doing some good work together.
Unfortunately this did not translate into the desired increase on my weight chart and that was a big deal for the service. There are many reasons for this that are much more complex than “it didn’t work”. As I will continue saying until I’m blue in the face EATING DISORDERS ARE NOT ABOUT WEIGHT.
My weight is just a symptom of my Anorexia which, while admittedly crap, has been my crutch and coping mechanism for longer than I care to remember. It’s what I run to for comfort when things get rough and bloody hell they got rough.
I didn’t just lose weight
Previously to entering treatment I’d had to move back into my family home after 7 years away – losing my beautiful little home, my independence and a lot of self esteem in the process.
During the course of my treatment I also lost my job as the company I adored went under. I went from doing full time work, commuting, extra media and freelance work to nothing. No redundancy money and no savings to fall back on either. I essentially lost my purpose as well as an income.
I eventually went through the grueling process of applying for benefits which stripped me of what little I had of my sanity. Months upon months spent filling out forms and waiting in terror. The assessment itself put me back in terms of weight restoration by literally six months.
We also lost my partner’s grandfather after a particularly brutal and drawn out battle with Dementia, Pneumonia and Sepsis. Grief and Depression crashed into our lives. We saw him the day before he died and the next day I saw a dead body for the first time.
I was discharged three days before the funeral. My weight was almost the lowest it had ever been. It was much lower than when I entered services and certainly wasn’t the healthy target they promised to help me get to.
So it was no wonder really, given all the set backs and shocks that I couldn’t manage to keep or put on weight during this time. My weight fluctuated and often dropped. Not surprising in grief but because I was in an Eating Disorder service this was apparently proof that the “treatment wasn’t working” and they should stop my sessions because they “clearly weren’t helping”.
For the record: unhelpful is being told by a clinician that you’re pretty damn normal ambivalence about weight restoration and recovery means it would be a “waste of money and resources if you don’t want to get better”.
Unhelpful is also being told that weight gain is your choice and yet also being told your brain is too malnourished for you to make competent choices.
I begged to stay
I begged not to be discharged. I begged my therapist, I begged my GP. My parents and partner begged. The GP herself wrote an strongly worded letter against my discharge.
When I was discharged I was told, in some attempt to quell my fears, “It’s OK, we expect you to get worse but you can always be re-referred”.
The words stuck in my throat. Always come back? I needed help then, I never stopped needing it this past year. And I was angry because we all know it’s not that simple. You don’t just wander or drop into mental health services. You need to be re-referred, you need to sit on a waiting list for assessment, be assessed, a decision must be made and then, should you even qualify for treatment you must sit on another waiting list for treatment to begin.
I was discharged September 9th 2016
I eventually gave in and was re-referred April 10th 2017
I was assessed on May 24th 2017
I start treatment September 22nd 2017
In that time I have mostly relied on the people around me – my outrageously patient partner and family, my friends. I have seen a GP face to face 7 times since I was discharged, had two review clinic sessions (where they essentially just check your weight and overall health for 20 minutes) and found a free support group that I attend when I can.
Of course this and everything that has happened in the past year since I was discharged has had a huge impact on me and I could have really done with that continued support. I have self harmed (something that had only happened once before in the last 6 years), my blood tests results have been coming back bad, I’ve been back on regular ECGs, I’ve started developing a bald spot from pulling my hair out of anxiety and I’m currently waiting to find out if I have in fact done permanent damage to my bone density.
My last chance
So here I am, a year on, about to step through that door again and I’m scared. Because this is my last chance. I’ve been told this is the last treatment they are offering me. These 16 sessions are the only chance I have left on the NHS and I can’t afford to go private.