By James Carey, UK
I have had eating issues since being a five year old, my earliest memories are being force fed at primary school because I wouldn’t eat my greens, or certain fruits, yes I was a picky eater…. a really picky eater. Ok that was the 1970s, knowledge was severely lacking about disordered eating and eating disorders back then. I quickly learned how to hide my eating problems, especially in school. In the 43 years since this I have visited so many doctors I have lost count, sometimes with severe and sudden weight loss, the answer was always simple, I should eat properly, now why didn’t I think of that?
Skipping breakfast, lunch just seemed ‘normal’
For the most part of my life I did, or so I thought, skipping breakfast, then lunch because I was so busy at work just seemed normal to me, I could easily make up when I got home, which I did most evenings, there were occasions when I “didn’t have time to eat”, which would lead into the next day, then days. Then eating would become so painful it was unbearable, I would be severely emaciated, extremely weak, life and work was a blur, I seemed to survive on adrenalin and caffeine alone, with the odd takeaway meal here and there.
I am one of the “lucky” ones, I survived these times, somehow or another I would return to “normal” eating again, enough to sustain life anyway, eating disorders claim far too many lives, far too many people suffer in silence with these illnesses, and far too many seek help only to be turned away and suffer the consequences. You could quite easily be forgiven for thinking I live in one of the many countries world eating disorders day are reaching out to, the ones where there are no or very limited eating disorder services, I don’t, I live in England, UK, the home of some of the leading eating disorder researchers, and pioneers with treatment. Our first port of call, our Doctors, have little or no training with these killer illnesses, treatment is sporadic at best here, excellent in some areas, none existent in others, I can’t begin to imagine how difficult it must be in the countries where there is nothing.
Early intervention is vital
Around two and a half years ago my then 11 year old daughter was presenting with symptoms and signs of anorexia nervosa, my own experiences helped to spot them very quickly. There had been the early warning signs in earlier childhood, but each time we overcame the picky eating and other symptoms. What I what I wasn’t prepared for was how little our medical service had advanced, it took 4 months to get a diagnosis of anorexia nervosa, despite all the “evidence” I took with me, numerous doctors turning us away, with the same old advice, just feed her, make her eat, “good” parents feed their children. It wasn’t that simple, it wasn’t that she didn’t want to eat, by now she couldn’t eat, her weight was plummeting dangerously, two visits to A & E resulted in us being sent home to feed her properly, by now she wasn’t eating anything, and barely drinking anything. By the time she was finally admitted to hospital she was in a critical state, all her vital signs where not good, severely emaciated and dehydrated, her life was in the balance, and for a while it was uncertain if she would survive. Early intervention with an eating disorder is vital, we did catch it very early, yet still her life was in real danger, medical help wasn’t available until she was in a critical condition. This scenario is all too familiar for so many sufferers, this is happening worldwide, even in the countries that have good and effective eating disorder treatment. My daughter was one of the “lucky” ones too, two and a half years later, a very long two and a half years, her health is far better, the vast majority of support and help has come through the knowledge and experience of other parents, not our health system.
Closing the research-practice gap
There are many highly skilled and knowledgeable professionals who have dedicated their careers to eating disorders, their research and work has advanced treatment methods to the point where eating disorders are fully treatable, and full recovery is now possible, yet effective treatment is still very difficult to obtain, either due to lack of availability, or due to the sheer expense or insurance denials, in many countries it doesn’t even exist.
World eating disorders day is important to me because none of this should be happening, this is 2016, yet effective treatment is only available for the minority, eating disorders have a high mortality rate, but remain a very low priority in comparison to most other illnesses. World eating disorders day is the unification of parents whose children have suffered, those who have recovered, eating disorder activists, organisations and professionals all combining to give their time and knowledge to help create awareness on a global scale, to advocate for better and effective treatment for anyone affected.
James has no professional involvement with eating disorders. He is a relative newcomer to advocacy being a member of three parent support groups for the past few months. His aim is to assist World Eating Disorder Action Day to help create global awareness for EDs, ensuring people are aware EDs do not discriminate: anyone, irrespective of age, sex, race or culture can suffer.
James is driven by the belief that: No matter where in the world you live, everyone deserves access to effective treatment.
Join James in supporting World Eating Disorders Action Day. Be sure to follow along on Twitter @WorldEDDay and hashtag #WeDoAct, #WorldEDActionDay, @WorldEatingDisordersAction on Instagram and World Eating Disorders Action Day on Facebook.