Monday 25 February 2019

My Story for Eating Disorders Awareness Week 2019 *PTW*

This year's theme for Eating Disorders Awareness Week (EDAW) is 'Breaking Down the Barriers'. 

Eating Disorders of any kind any affect anyone; they don't discriminate. The myth is that eating disorders are a middle class white teenage girls illness. Wrong. Over the yeas of being treated for my own eating disorder I have met people form all sorts of walks of life - boys, girls, young people living in foster care, middle class people, working class people, employed, unemployed, pre-teen, middle aged, people from all sort of religions or not religion at all; the list goes on.

I've also faced barriers to treatment and I've known others struggle to get treatment.

This year I also wanted to post in memory of all those who have lost their fight to eating disorders, because the things is, eatings disorders have the highest mortality rate of any mental illness; far more than depression like most people think.

When you enter the world that is mental illness, (and I've been in more of my life than I haven't) you get to know people through a shared understanding whether it be from hospital, volunteer work or just through the circle of people that are also living with an eating disorder/mental illness. 

Last year I didn't;t feel able to be open about my story, but I've always believed that by sharing the true unsugarcoated reality that is an eating disorder/mental illness that true understanding and barriers can be broken.

*** Possible Trigger Warning ***

I've always struggled with my mental health in some way or another. I've alway been quite sensitive and I've struggled to make sense of the world around me - as an adult now I'm going through the process of being assessed for Autism, but whether I have Autism of not it makes no difference; it's just who I am. Because I was sensitive and found he world hard to understand and also because of my Disorganised Attachment Disorder I found it easier to live in my own world but it made me an easy target to be teased in primary school and because I would react it made it all the more entertaining. I was also born with a spinal curvature so I had adaptations to my desk and chair; something that was supposed to help me just made me all the more different.
It got better when I moved school in year 6; it was a small school, each year group was just a single class and my teacher nudged me into a group of friends and it was the five us us - two sets of friends and then me - I was forever the odd one out. 
This primary school had a linked secondary school and was a circle of small Catholic schools: 2 primary and 1 secondary. Most of my primary school class moved onto the linked secondary school.
Over the summer holidays everyone suddenly grew up; all except me. I was left behind, still a the small, odd-one-out girl.
I hated secondary school. Instead of friends I had bullies and if it was one person or group of people it would be another person or group of people calling me names, laughing at me, stealing my things and emptying the contents of my bag along the corridor. Sometimes it got violent, I even got my arm broken when a chair got thrown at me. 
Because of my dyslexia I was moved from French and Spanish to the Key Skills group as I just couldn't grasp learning foreign languages. I was bright with an above average IQ so I knew how to read and write it was just difficult. As you can guess the key skills group was for the less bright children who'd rather play truant than be in school and it was more entertaining for them to wind me up than learn how to read and write.
I started to play truant myself.

The other thing I hated about secondary school was all the people. I dreaded the end of class bell. I'm still haunted by memories of dreading the end of class bell and trying to move from one class to another and getting trampled by a stampede of a school all going from one class to the next. I also avoided the canteen from day one as it was too small a room for the size of school, plus it meant I could avoid people and I had my own hiding place outside where I'd sit and read or I'd sit in the library. I was also fond of the music teacher and I used to spend my breaks in her classroom too.

I'd probably pinpoint that my depression began when I moved to secondary school. Soon after my eating disorder began.

When you have an eating disorder to become exceptionally deceptive. To the outside world I was bright, doing well academically, a model student, helpful, polite. But inside I was crumbling apart and falling into darkness. My true home life was also different to the one painted on the outside. I was dong well to hold my brokenness to pieces until one follow up (in the September I remember) with my paediatrician (who I saw regularly since I was young) and I fell apart in front of him and opened up him about my blackness and my deceptiveness. At 12 I was diagnosed with clinical depression and Anorexia Nervosa. Suddenly my world was turned upside down, I had to start seeing my paediatrician twice a week and weekly with a dietician and I was put on the waiting list to be seen by CAMHS (Child and Adolescent Mental Health Services).
I had tried up open up to my music teacher about my self-harm but her response was unhelpful to say the least.

I couldn't cope with what was being expected of me. It was all too much to fast and I spiralled faster and faster. I'd had thoughts of suicide. Looking back since I was a young child I'd hurt myself by hitting, but as my depression hit it became more serious. Then the October I was hospitalised after taking an overdose. I was seen by CAMHS immediately. I'll never forget Alice*; she was the first person to truly listen to me, about my home life, how I felt, the expectations put on my by my dietician and my paediatrician. I started twice weekly psychotherapy with Alice but still my Anorexia, depression and self-harming/overdosing spiralled and worsened. By December I was hospitalised.

That was one of many hospitals that ensued. Some where general CAMHS units, some PICU's (Psychiatric Intensive Care Units) and others where specialist EDU's (Eating Disorder Units). Some units gave up on me and either discharged me only to be readmitted to another or just passed me onto another unit. I also spent time on paediatric medical wards, to physically unwell for psychiatric units.

The main issue with the treatment for Anorexia was the main focus was on weight restoration which in my case 99% was forced upon me through tube feeding and then I was discharged home for therapy in outpatient CAMHS with Alice. The main problem though was that mentally/emotionally I was still where I was before my admission to hospital so I would quickly relapse with my Anorexia and/or I would seriously harm myself as I could cope with a 'weight restored' body and so I would end up back in hospital.

Hospital got me away from home and school. It gave me routine and stability which I didn't have. I spent a lot of time in time-out, sometimes I would deliberately kick-off just to be sent to the time-out room to be alone. Even now I miss being ale to have a proper meltdown as it's more acceptable when you're in hospital as opposed to in the community; though I don't miss having to use the bathroom with three member of staff all within arms reach.

As much as hospital saved my life medically it was my psychotherapy with Alice that saved me. She showed me true care. Wherever in the country I was she was the only person to attend every meeting. When I was having therapy in the community with me she would spend hours commenting through a snow storm so as to see me on that day. She was the only solid thing in my life - wherever I was physically or emotionally she would still be there on a Monday and Thursday at 10.30am in the pink room sat on the floor.

There where only things that I learnt later about Alice. About how she fought when I turned 18 to try and keep me so I could continue the psychotherapy I needed to heal my brokenness; how the box of art materials which I just thought was just things she threw together each session was actually my box and no one else was allowed to touch it and if someone did need to borrow he glue out of it they had to put it back in exactly the same place. Alice saved me and I miss her so much and Alice is the reason why I want to train as a Child Psychotherapist so I can give back what Alice gave me. It was also Alice who taught me that there are more ways of "talking' than just with words - we had a lot of silence and I found my voice through art which helped me to open up and "speak" and looking back Alice was the first person I attached to which is a big thing for me. Another thing I later learnt about Alice is how she fought with Children's Social Care Services for me.

I suppose in some ways I did fit into the stereotype of a "Anorexic" for a time being, but now I still struggle with my eating disorder and I always will but now I don't find into the stenotype and that makes access to treatment harder.

I believe that regardless of where you're at in you're eating disorder, or what type of eating disorder you have people should have better access to care. It's difficult as often individuals hide and lie and don't want care and in some cases, like mine, I was already deep in my Anorexia and treatment was forced upon me. But I think that the moment people realise and want/need help they should be able to access care and I believe that for eating disorders treatment needs to continue in the long-team as physical recovery is easier than emotional recovery and long-term psychological/emotional support is needed for full recovery.  I feel eating disorders like most NHS services are overwhelmed and under-funded and its a revolving door: patch the person up and send them away. Far too often I feel the focus for eating disorder services is on the physical 'recovery' for individuals. So when you are "physically recovered" or you're physically stable e.g. potassium levels are within an acceptable range, you're faced with barriers to treatment because you're seen as "well" and services don't have the time or resources to offer the emotional aspect of recovery. There is also the case of 'postcode' lottery and they is no equally in terms of services for individuals with eating disorders from areas-to-area.

I now live with the physical consequences of my eating disorder and part of me feels the if an intervention have of happened sooner maybe I wouldn't have done so much damage to my body or have spent too much time in hospital and instead been in psychotherapy for long putting my like together as after all eating disorders are a mental illness and need to be treated as one.

I'd like to turn back to the people around me who (I believe as a Christian) who are now in heaven; who have lost their fight for all sorts of reasons but those reasons don't matter. Eating disorders kill and that needs to change; those people and those friends are more than a statistic, they are people who are loved and will always be missed.

My story is mine to tell. Each person's is unique to them. Its been difficult but cathartic to write this and it's only a portion of the story.

Note: All views are my own
* pseudonym to protect identity