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It is not a choice, it is an illness

ysgrifennwyd gan Ffion Jones 18/07/2013

It is not a choice, it is an illness
I was like a robot whose control panel had gone squiffy

My name is Ffion Jones (aka ffi). I am 23 years old, I like reading, listening to music and spending time with friends and family.

I have done lots of things with my life so far - been on holiday, seen the Vatican in Rome along with Michael Angelo’s ceiling, visited the Pyramids in Egypt, climbed mount Snowdon, been Paragliding, swam with dolphins and seen my fair share of music concerts and theatre productions.

In addition to these wonderful experiences, I have also been sectioned under the mental health act three times, been pinned down and fed via NG tube, spent months at a time in both general and Psychiatric hospitals, become Psychotically Depressed - leaving me with hallucinations of dark shadows being sent to harm my family, and pushed my body to such horrific extremes I nearly lost my life on several occasions - all due to the firm grip my Eating Disorder has had on me since I was 11 years old.

Despite the belief of many people out there, I did not choose to become anorexic. There was never one moment where I suddenly thought, “I know, I’ll just destroy my life for the next decade, this seems like a great idea.” And I did not have a traumatic childhood, I was never abused. I’m very lucky as I have an amazing family who have stood by me in a way I never thought possible. My brother was only 6 years old when a fellow pupil came up to him in the school yard and said, “My mummy said your sister’s going to die.” He has grown up visiting his big sister in psychiatric units, played cards with me while I had a NG tube up my nose and witnessed me being driven into casualty when the burden of living with my illness seemed too much and I tried to take my own life. And the saddest thing of all is that he doesn’t remember me well.

The guilt I feel over this is something I don’t think will ever leave me, but all I can do now is be the big sister I have always wanted to be with the time we have left together. I don’t want to be famous, I don’t want to be rich, I just want to wake up in the morning and be able to decide what to have for breakfast without my mind being flooded with punitive thoughts of what I “don’t deserve” and what’s “too naughty”, whilst being flooded with an excruciating amount of anxiety that makes me want to squirm inside my own skin.

Don’t get me wrong - I’m better now than I have ever been and my illness has certainly morphed and changed with me over the years. I have grown stronger with every step that I moved forward, every time I dragged myself up from what I thought was the end for me.

When I first became ill I didn’t know what hit me, I underestimated the strength of my illness. I never wanted to lose weight, I wanted to ‘be better’, and I hated myself and just wanted to change, and to feel accepted, to be ok with myself. And the obvious starting point for that (just like the movies) is usually a clean diet and exercise, then the girl gets the guy and all the cool friends and lives happily ever after, right? I’ve seen a lot of films and it happens in all of them - legally blonde, Bridget Jones, Miss Congeniality, it seemed like a fool-proof plan at the time.

But just as I thought I was gaining some control over my life, I realised I was not in control at all. It was only when I felt too tired to get out of bed and go for a run at 5am that I realised I couldn’t “just could not”, I “had” to get up and move, I had to stand for the exact same amount of time each day, I had to weigh out each grain of food, I had to only eat at certain times in certain places of the house and with a certain ritualistic method. I was like a robot whose control panel had gone squiffy, I hated every second of the day, I was exhausted, I was starving and I longed for a nap and a cup of tea and with a Kit Kat, but I couldn’t let myself. The more my illness took control and the more my weight plummeted, the more I was driven to see the numbers on the scales go down, the worse I felt about myself and the louder those voices got in my head telling me I was worthless, a bad person, I didn’t deserve to eat, I didn’t deserve to live, I was horrible, disgusting, and they would never let up for a second, no matter what I did to please them and try and shut them up for a while, it was never good enough, they always wanted more.

The first six months of me getting ill were like some horrific car crash, I was like a tidal wave of destruction and went from being a perfectly healthy teenager, to being on deaths door, phobic of everything to do with food - I wouldn’t touch it in case it was absorbed into my skin, I wouldn’t smell food in case the calories could be inhaled and I soon stopped drinking in fear of calories in water. As my mind grew darker and darker I didn’t know who I was anymore, my personality wasn’t accessible, I had lost my ffi-ness and was a shadow of my former self. My body and mind were at war - I grew thick hair over my body during its attempt to keep my organs warm due to lack of protective fat, I stopped menstruating, I lost muscle internally as well as externally-leaving my heart and other vital organs in danger, the hair fell from my head as my body didn’t have enough energy to keep it growing and I collapsed several times due to dehydration before being rushed to hospital and placed on drips.

I was terrified, people stared at me and whispered, the medical staff in the General Hospitals asked me why I was there, why wouldn’t I eat, why was I doing this to myself when there were patients there who has no control over their illnesses and I did. The truth is I was just as clueless as they were - I couldn’t stop, I didn’t enjoy it, I felt the physical pain as a result of the abuse I was putting my body through. I’d have given anything to stop, but I couldn’t. There have been times when strangers in the street have shouted at me. You name it - they have called me it – “Vegetarian toothpick, key hole Kate, eat a burger, skinny cow, **king disgusting.” Someone actually threw a pasty at my head from outside Greggs once. The other thing people like to say is how intelligent I am, “She’s so clever, why is she doing this?”

The answer is actually relatively simple - I’m mentally Ill. There is no logic in mental illness, I may be able to pass my exams with flying colours and finish a Sudoku but that doesn’t mean I’m not completely irrational at times. If it was as simple as eating a Big Mac and having my illness disappear, I would have done that 12 years ago. And one of the hardest things for me was coming to terms with having to live alongside my illness, learning to control it instead of the other way around. My Journey has been a long and bumpy road and sometimes I think the only way I have gotten through is due to how irritatingly stubborn I am - I hate losing and I’m not about to let an illness that I hate order me around anymore. I hate that it’s still a feature of my life and the last year I have worked harder than ever to face my fears, set myself challenges which most people can do without batting an eye lid.

I had a melt in the middle chocolate pudding from Marks and Spencer’s a few weeks ago - the one on the advert with the lady with the unnecessarily sensual voice that I had stared at for about 6 years but never let myself have, and my anxiety hit the roof while it was cooking, the smell was divine and I paced around the kitchen debating whether I should have it or not, was it “too nice for me”, had I “earned it”? And that set my alarm bells off, whenever I find the word “allowed” enter my mind I know instantly it is my illness and therefore I need to do the opposite to what its telling me. I loved every mouthful of that pudding and I’ve had it twice since that first time, I am no longer in denial - I love chocolate! Someone once told me, “The only way out is through,” and that has helped me a lot over the last few months as I faced my illness head on.

At this moment in time I am better than I have ever been, for the first time in my life I am a healthy, for the first time since I was 12 I am at a healthy body weight and at times I still feel like an alien off men in black, like I don’t quite fit right in my own skin. But I am loving it more and more, I love being able to watch a film without getting a numb bum, I love being able to walk down the street and not have people know what’s wrong with me, they have no idea what’s going on in my head when I’m queuing at Costa. I look like a normal indecisive person trying to choose which delicious cake to have, they don’t hear the stream of thoughts and voices flood through my mind, or the fast beating of my heart as my anxiety reaches a peak over whether I have made the “right” decision. I may have my demons under a tight leash at the moment, but it does not mean that they are not there. And it does not mean that I am not fearful that one day they will get loose again and take over.

I have already lost years of my life to this illness, I never had a school prom, I’m 23 and I’ve never had a proper relationship, I haven’t enjoyed a birthday or Christmas in a decade, I haven’t even let myself celebrate my birthday or accept presents since I was 12, I never felt worthy. And last Christmas I was actually sectioned under the mental health Act and spent the whole period (including New Year) in a Specialist Eating Disorder Unit. But these are now fragments of my past, soon to be replaced by the things that I can do now and the things that I will do in the future. These memories and psychological scars will never leave me, the guilt of what I’ve put my family through will always be there to some extent, and the damage done to my body has left me with severe Osteoporosis, which at the age of 23 isn’t good, I am also yet to find out if I am fertile. These are not things that I can change or reverse no matter how much I want to, all I can do is look to the future and deal the cards that life has given me to my best ability.

I have had half of my life time completely destroyed by my illness and it will affect me to some extent forever, but actually right now, for the first time I’m ok, I am not completely cured, I don’t feel wonderful about myself and I’m not next in line as Prime Minister but I’m genuinely “ok” and actually happy and hopeful for my future. There have been several times in my life when I thought my illness would kill me, I would never get “better”, I didn’t even know what “better” was. And I’m still not entirely sure because my illness is not gone, but it has shrunk back into its corner and I have no intention of letting it out again-ever! I will never let the lies spun by my illness consume my mind again, I will never bow down to its tortuous demands and I will stand up and fight against my Eating Disorder and the disorders of thousands of others suffering in the UK alone.

To suffer with an Eating Disorder is to fall under the clutches of a severe psychological cancer that’s sole aim is to destroy the lives of its beautiful and unsuspecting sufferers. My message is a simple one - never lose hope, never give up and never feel ashamed of being ill. Not everyone will understand what you are going through and many may cast unnecessary judgments but take it from the millions suffering out there - It is not a choice, it is an illness and like any other illness it can be treated.

Os hoffech chi sgwennu cofnod blog am eich profiadau o stigma, ebostiwch info@timetochangewales.org.uk

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