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  • Writer's pictureEmily & Nikki Smith

Essential Change is Required for Eating Disorder Treatment, for Both Sufferers and Their Families

Ellie


Anorexia. Where to even begin. I try now to be as open and honest as I can about this vile illness, and try to spread awareness but sometimes I find myself struggling to even put into words how this has affected the last 11/12 years of my life, and so many others I know. I am 25 years old, but a 25 year old who has certainly not led a ‘normal’ life. I have spent more time in hospitals over the years; including general hospitals (which do not have a single clue how to treat eating disorders), adolescent inpatient, private day care services, acute mental health wards for my safety (due to this illness quite literally driving me to the point of suicide attempts), and many, many adult Specialist Eating Disorder Unit admissions, to currently being in an eating disorder rehabilitation placement. 


I have seen and experienced things that at the age of 25 most people haven’t or won’t experience in a lifetime. I have so much trauma due to Anorexia, and now have a diagnosis of emotionally unstable personality disorder (EUPD) because of my experiences and trauma. I have lost friends, damaged relationships, and completely destroyed my body. No one tells you (or at least when so entrenched your anorexic brain will not listen) about the complications chronic Anorexia can have on the human body. I have osteoporosis, cardiac complications and problems, a bowel/bladder that barely works, and who knows if I can ever have children. Unfortunately, I am once again, stuck in the cycle of relapse/‘recovery’. I can rationally say it is an ongoing cycle of losing weight to then being made to gain it back. But it’s so much more than that – and it’s an extremely hard cycle to break. Painful. Torturous. It seems impossible. 


Anorexia is not just about the food, or the wanting to be ‘skinny’, that never even crossed my mind. I did not develop my Anorexia because I went on a diet. The reasons I developed Anorexia are something we are still trying to figure out 11 years later through countless methods of therapy. I’m lucky that I have had pretty good professional support throughout my journey, and of course family/friends support. But eventually, this support appears (to me) to get less and less as the illness goes on. At my lowest times and when this illness is so, so strong I have begged to be sent to palliative care. To end this pain and despair. 


I often break my own heart thinking about how I have affected my family, especially my brothers, mum and dad. But they are always there for me, no matter how much of a monster I have been to them. 


Whilst I wish I had never developed this illness, it has taught me a lot about myself, life, and all its complications. Oh, and I have met some absolutely incredible and lovely people.


Despite continual comments made over the years by consultants saying I’ll be ‘in and out of hospital’, I still, even just 0.0005% of me at times, have hope. I have dreams that I want to make a reality. I want to live. I want to see the world, I want to laugh uncontrollably and for it to be genuine. 


Please listen to us, we need more readily available help, and not to be told we’re ‘too complicated or too chronic to treat’.


I will leave this with a quote that always hits home, as I have been far too close to it sometimes. “You have to stop dancing with death darling, as one of these days he’s not going to fucking let you go”.


Nicky


February 2014 – the year and month a ‘guest’ – a very unwelcome ‘guest’ joined our family. Before then we were just an ordinary family – mum, dad and 3 children – busy working lives, weekends full of children’s activities, happy holidays, laughter, chaos at times and I can just about remember our family Sunday lunches!


Then my daughter (aged 14) was diagnosed with an illness that I would never wish upon anyone, any son, daughter or family. Anorexia Nervosa is not a new illness, today it's well-documented with public awareness growing all the time. As a family, we had absolutely no idea how this cruel illness would define our family for years to come.


It's unimaginably hard to watch your daughter/your sister quite literally fade away in front of you. To hear the most unnatural cries of torment, the screams of frustration, you see the sheer terror on her face, to watch her tear her skin, pull at her hair, thump walls, kick out, you listen and take the impulsive and abusive shouts out of abuse. You feel and live her sadness every day.


This illness takes away every motherly instinct a mother has – you desperately just want to cuddle your child but your tummy turns at what you feel. This illness takes away hope, you know a moment of hope can be dashed in an instant so for self-preservation you daren’t hope. Before you speak you learn to choose your words for fear of triggering an explosion. I remember that heart-breaking moment when my daughter was first admitted to an inpatient unit – the utter devastation of handing over my care, my responsibility, and my love to complete strangers. Watching your daughter being sectioned is something no parent should ever have to listen to and go through. You learn to accept that your waking thought and your last thought of the day will be anorexic-related.


For all the above reasons above and many many more, it’s so important for parents/carers and families to have access to professional support at every stage that Anorexia presents. A support team who can offer knowledge, reassurance, listen, react, explain and above all are approachable in desperate times of need. 


Throughout all this time my daughter has been lucky (although she may not always recognise this!) to have been in the main supported by a variety of ED services albeit at some times more than others, by the most amazing, caring, supportive teams.


Support for us parents? Not as much as we often need, but as I said we are not new to this journey and maybe just now more accepting of that’s the way the system works. In terms of sibling support, my younger son has grown up with this illness. He can’t remember family life before Anorexia and whilst he’s coped amazingly well all things considered but at times he has needed support too.


We’re lucky to have a very close family and some great friends who have indeed been there for us but with the best intentions in the world, you need a support network of those that know and understand the real impact on family life that Anorexia brings. Anorexia isn’t a logical illness – normal ‘helpful’ comments and suggestions are so out of place and evidence of how little most people understand eating disorders…. Why should they? Thankfully they have never had to consider it.


During the last 11 years, we’ve gone through what feels like almost the complete range of eating disorder services. Commencing with CAMHS, a few months in the private sector, Tier 4 specialist adolescent ED service, adolescent inpatient care, adult outpatient care and inpatient care (SEDUs) , a transfer to another county adult eating disorder service, been through the process of being sectioned under the MH act, emergency admission to an acute MH unit (dreadful time) and more recently a stay in a ‘step down’ community ED home. It’s been quite a journey and eleven years later we are where we are today – currently supporting my daughter during her 9th inpatient stay. 


The same can be said of Eating Disorder services around the country in terms of different approaches and levels of support. I hear and read of such a variety in terms of quality and support available depending on where you live. Until recently we’ve had a relatively good experience – this last year has been our greatest challenge given the longevity of my daughter’s illness – but that’s another ‘story’ for another day!


I always try and look for positives in any situation. Our anorexic journey has:

  1. Given me the chance to have ‘my’ time in the car for the hours of driving to/from inpatient units and listening to music of my choice!

  2. My daughter and I are now world champions at Bananagrams

  3. Our dog loves Fortisip

  4. I've made lifelong friends going through the same experience (those at FEAST) 


Finally, it’s really important to remember that everyone and every family has a different journey, the beast of Anorexia knows no boundaries and reveals its horrors in a variety of ways – very individually.


I have to say it’s all rather exhausting at times both physically and mentally – but we go on knowing that one day we’ll all get to a happier time (we can’t wait to go on a family holiday again!)

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