I thought my story started eight years ago at the age of 36, when after rapidly falling victim to acute treatment-resistant depression and two unsuccessful hospitalisations, I was diagnosed with EDNOS (OSFED). I’d ceased to care about anything, or at least thought I had. However, I remember now the feeling of failure and disappointment that this diagnosis meant I wasn’t even successful at achieving the low weight status of anorexia. I’ve recently discovered from reading diaries I’ve kept throughout my life that body image issues and a guilty relationship with “naughty foods” have plagued me forever.
Forward wind two years and my depression had sunk to a critical low. Another inpatient stay, seeing psychiatrists twice a week, every single medication combination, experimental trials of magnetic electrode therapy and electro-convulsive shock treatments saw me a monosyllabic shell of a person whose depression had now been reclassified as untreatable, worse to me than a terminal diagnosis. I don’t believe in the afterlife, but I know what being told I’d face eternal hell for the remainder of my life is like.
My parents brought me back from my adopted and once very loved home/life in Australia which I’d loved for 15 years to take care of me in my childhood home. I no longer cared where I was. The fight against the depression and the hope of recovery was no longer a possibility and my existence was sleep, hours of quiz shows (I had no interest or ability to focus on anything with a plot) a daily walk and meals. Everything was out of my control except those meals. My illness had cost me everything: my personality, my intellect, my passions, my home, my job, my friends...everything.
It was certainly not body image that led to that strict control...I lived in baggy t-shirts and jogging bottoms and saw no one except my parents and doctors. But after a lifetime of amazing achievements, the only thing I could achieve, as another day ended, was the knowledge that I couldn’t have eaten any less – the same boring thing and quantity and mealtimes every day. I’d disciplined myself to self-imposed mealtimes, resisted the hunger, and pitiful as those meals were, they were the only glimmers of brightness in my dark, dark days.
My parents didn’t give up on me though...a new psychiatrist sent me for another ED assessment, and I was shocked (/delighted!) that I’d “achieved” anorexia!! I know...just the first signs of the illogicality of an ED. But I was too beaten down by depression to resist going into hospital for it. Even that first day there, the silent, emotionless, numb Tori turned into a screaming, hysterical devil as that last vestige of control was taken away and I was faced with the scariest thing I could imagine...a glass of milk.
During that torturous five months in hospital I miraculously recovered from the depression (anxiety in the dining room made me forge friendships and chat with others to distract myself, desperation to get off the ward saw me going to OT classes and slowly rediscovering things I enjoyed doing). However, I picked up every fear food from every other patient and learnt every trick in the book to eat the minimum possible, exercise the most and influence those dreaded scales, hide the hysterics, put the mask on of someone embracing recovery and deceive the professionals in every way to get discharged.
So I came out having rediscovered a will to live I’d thought I’d lost forever, but far further entrenched in the grips of anorexia. In the three-month gap between discharge and starting day care I lost so much weight I was unrecognisable and physically critical. One evening I went to the bathroom and had a panic attack and started screaming as I looked in the mirror and saw the face looking back at me.
For the first time I was terrified. That was my turning point. I fully expected on my first day at day care for them to section me but they listened to how desperate I was for the psychological support and ability to really recover rather than disciplined refeeding in a hospital environment and they gave me a chance (on the caveat that I didn’t lose a gram more). Since that day my recovery has progressed (frustratingly slowly but progress nonetheless) and the inspiration was the wonderful life of travel and adventure and enjoyment of food I’d been blessed with prior to my illness.
I’ve worked tirelessly in day care, private therapy and on my own to get as “recovered” as I can possibly be. I wasn’t content with surviving with an ED. To me the mental torture and confines are the worst part, so a healthy body without a quality of life was not enough. I don’t want to have the strains of the illness on the relationships with my friends and family, I don’t want to be on a “menu plan” forever, I don’t want to be the person who looks on at envy at social occasions as other people relax and enjoy their food, drool at food street markets in foreign climes and then find a private spot to eat my packed lunch! My passion is travelling and very early on in my recovery I started to travel again. In the last two years I’ve been to France numerous times, Germany, Bulgaria, Spain twice, Poland, Australia for five weeks and backpacking solo for four weeks around Cuba. These trips have been hard work food-wise but I book them and worry about the practicalities later, and each trip I become more and more relaxed around food. In all of the events/trips I’ve done, despite occasional wobbles (par for the course I’d say), I’ve found the enjoyment and pride I got out of them far outweighed any fleeting moments of fear/discomfort, and really the only real thing to fear is fear itself.
I’m inspired by podcasts/recovery blogs of people who have really recovered. That’s not to say that there’s never anxiety around food but that’s pretty common in a lot of people and unfortunately a result of the society we live in, but I set myself challenges every day. Once one fear food/situation is conquered I just raise the ante! But I like everyone had to start with baby steps. My goal is intuitive eating and finding my healthy body point, whatever size that might be. I’m not there yet but that light at the end of the tunnel I couldn’t see for so long, when I was really wondering why I was working so hard and dealing with the enormous complexity of thoughts/fears/challenges every single waking moment and not feeling any progress, is shining bright.
I read a Chinese parable that rang so true to me: after planting and daily tending, nourishing and watering Chinese bamboo there’s no evidence of life for the first four years. The gardener’s patience is tested, and they wonder if their efforts will ever be rewarded...but in the fifth year it sprouts through the soil and grows 80 feet in six weeks! Not only that, but due to the first four years of attention it’s developed such a strong root system it’s fortified against whatever nature throws at it...that is my recovery. Progress, though slow, has been enormous. I used to obsess over a single calorie, used to deceive people who cared about me in defence of my ED, feel the guilt of eating, the guilt of restriction, the guilt of bingeing. Guilt about everything. I felt powerless to its inordinate strength over me and the way it had permeated and negatively affected every single aspect of my life. But through my hard work and the support of my family (who are collateral victims to this insidious disease too) I’m now back in control...the irony...that control I was so proud of, and protective of, wasn’t mine but the ED’s; that guilt and fear and behaviour wasn’t me but the ED.
I know the traits that led me to an ED – perseverance, goal-driven, organisation, attention to detail and intelligence (anyone with an ED will know the permutations and calculations that have to be constantly reconfigured and mental gymnastics that come with the disease/recovery) – can be strengths rather than weaknesses if channelled in a healthy direction. I love myself more than I ever did, exactly who I am. I’m proud of myself; I have more compassion for others. I adopted a daily practice of journaling, gratitude, smile and achievement lists from my first day in recovery and not one day have those lists been empty despite the rollercoaster! Experiencing such an evil illness can make you appreciate the simplest things and consider the smallest steps to recovery an achievement. Those small steps gradually add up and now I really do enjoy my food without guilt!
So what’s my next big challenge? Well, I was going to jump out of a plane. Everyone I spoke to said how brave that would make me, but I realised I wasn’t at all nervous about that and joked that the real challenge would be taking me unexpectedly to Pret A Manger to eat a sandwich! So my new fundraising event for Beat is “Dining in the dark”: a mystery three-course dinner served without any hint of what is on the plates and in the pitch dark, plus on communal tables with other diners I don’t know. Now that’s what I call a challenge!
I’m not ashamed of suffering from an illness – I refuse to be identified by it, I educate people I meet about the complex nature of eating disorders and that weight has NO bearing on the mental (real) side of the illness, in addition to busting other misconceptions. The journey has been/is still hard but it’s SO worth it and I’m not done with it yet! Treatment in this country is inadequate and recovery stories, practical steppingstones and plans for meaningful recovery need to be sought out, but they are there, and everyone can achieve real recovery – quality of life, goals unimpeded by the cloud of fear. An ED does not have to be a death sentence or a lifetime of relapses interspersed with living dictated to by the ED in that mental and physical prison. We all have the power within us – our paths to recovery may look different but there is one out there for all of us.