IMAGINE being forced to chase tornados for the rest of your life: swept up in a constant, compulsive, dangerous dance with chaos and destruction.
That’s how Lucy* describes living with an eating disorder.
“Interactions with other people, decision-making, jobs, what to wear, friendships, relationships: it affects everything, and spills out into every area of life,” she says.
Lucy, who lives in Cork, is aged 40. She has been getting treatment for her eating disorder for over four years, but she describes first becoming aware of “food as this other thing” at just five years old.
“Even as that little person of five, my sense of self and how much I would eat became enmeshed with each other,” she says. “The monster grew, and it was something I never questioned.”
There are different forms of eating disorder, the best known of which are anorexia nervosa and bulimia nervosa, along with other forms like binge-eating disorder and orthorexia. But there’s a frequent overlap between diagnoses, which are based on the behaviour of the sufferer, so Lucy doesn’t find it helpful to put a label on her condition.
“My pattern was more on the restrictive side, so more towards anorexia, but they diverge very often,” she says.
“Even in recovery from anorexia, you often merge into bulimic tendencies because your eating patterns are so out of kilter.”
In her early teens, Lucy began restricting her diet.
“The campaign began,” she says. “There was a moment where I came up with a plan, and it was the most normal thing to me. It was linked to how I saw eating, my body and myself.”
So began over two decades of cyclical food-centred behaviours that took their toll on Lucy’s health, relationships, work and social life. In her worst phases, she wouldn’t eat anything at all for days on end, and this would be seen as a win. Her health suffered; she has endured many of the complaints that are common to people with eating disorders.
“I just finished two years of dental work to sort out my teeth,” she says. “I’ve had loads of digestive problems. My menstrual cycle has always been all over the place; my period was gone for years, back, and then gone again. Hormonally, that has a huge effect, with knock-on impacts on things like your bone density.”
It’s been a long path for Lucy to even accept that what she was doing to herself constituted an eating disorder. She now gets treatment in the Cork Eating Disorder Centre.
“Things became so horrendous that I came to an acceptance of what was going on,” she says. “It was around four years ago; things were at the point where relationships and friendships, all these important areas, all began to become unstuck. There was a point where I realised my way does not work and was destroying me.”
There are many myths around eating disorders, and these misconceptions can be a real challenge to sufferers being able to open up about the condition they are living with.
“Eating disorders are a psychological condition, a mental health issue,” Lucy says. “It’s about your thinking. That doesn’t stop if you fix the food. It’s a persistent, 24-7 mindset. Even if you’re obeying all the horrendous rules you set for yourself, you don’t get a break.
“I understand how people think it’s about the food and some young girl wanting to be thin, but that’s not it. It’s time people realised that this isn’t about food. It is the first step, of course, because you can’t engage in any treatment until you’ve dealt with nutritional deficiencies.”
Now, Lucy has worked hard to tackle some of her larger issues with an illness that is often characterised by periods of relapse. She feels she has stabilised many of the food-related behaviours that she used to engage in.
“I continue to build myself up,” she says. “In terms of behaviour around food, it might be there, it doesn’t derail me in any way now. When you start experiencing life, which is about people and being around people, you’re not thinking about what’s on your plate.”
Lucy’s treatment has included Cognitive Behavioural Therapy, Dialectical Behavioural Therapy and Personal Psychodynamic Therapy. She says the atmosphere and approach she found in the Cork Eating Disorder Centre, which celebrates ten years of dedicated treatment for Cork sufferers this year, was crucial to her long road to recovery.
“I could always trust what they said was consistently true, and to me that was really important because you’re living in a place of lies and self-deception,” she says. “It’s like you’ve made best friends with a whole bunch of lies.”
For other people suffering from eating disorders, Lucy has a strong message: “I would say to people that it’s never OK to be destructive and unkind to yourself. No matter what’s going on, it’s not right to have this barrage of persistent punishment and destruction against yourself.
“You need to get yourself around hopeful, truthful, strong recovery messages. In the beginning, you don’t even need to believe it: you just need to get yourself around it somehow, and let them believe it for you.
“It becomes much, much easier the more you regain a healthy way of thinking about yourself,” she says.
“I learned to never say the word never. It might just be surviving the next 24 hours, and that’s brilliant: you’ve done a fantastic job.”
Up to 200,000 Irish people may have eating disorders, according to estimates by the Department of Health and Children. Around 400 new cases emerge each year, representing 80 deaths each year.
In 2017, the Cork Eating Disorder Centre (EDCC) saw a 26% increase in people seeking their services, mainly from adolescence up to 35 years of age. More than 60 patients from Cork and neighbouring counties avail of outpatient care at the centre, including Interpersonal Therapy, Dialectical Behavioural Therapy and Cognitive Behavioural Therapy, and a qualified nutritionist.
In a calm, tastefully decorated office at the Patrick’s Hill EDCC clinic, Trish Shiel, Clinical Manager with the non-profit, sits under an artwork made by a patient.
She says International Eating Disorder Awareness Week is important, both to bust myths about eating disorders and to campaign for early intervention. This can be a matter of life and death.
If untreated, 20% of anorexia sufferers will die: eating disorders (ED) have the highest mortality rate of any mental health condition.
Damaging myths include the notion that an ED sufferer will look very thin.
“Eating disorder sufferers come in all shapes and sizes, and some people can be incredibly thin and not have an eating disorder at all,” Trish says. “It’s almost dangerous to think like that, because people can be misjudged or missed entirely.”
Instead, EDCC has been teaming up with UCC to figure out ways that GPs and dentists can help to provide early screening for the symptoms of ED, and to encourage their patients to seek help early.
This Eating Disorder Awareness Week, the EDCC launches a leaflet campaign for dentists’ waiting rooms. Tooth enamel erosion is a common problem for ED sufferers, who binge eat and purge by vomiting, as the acids in vomit are corrosive to teeth.
Dentists may also be able to spot dry mouth and other changes to oral health that suggest that a patients’ eating habits are a source of concern.
“We’re excited to think professionals like that could become aware and start looking through a different lens, and play a role in diverting someone towards treatment,” Trish says.
“Early intervention can stop people from heading down a very long road of very severe suffering, serious illness and even death. I don’t want to be frightening, but it’s very important that we get the message out there: these are very, very dangerous conditions. They are life-threatening.”
* Lucy’s name has been changed for this article.
Eating Disorder Awareness Week got underway yesterday and runs until March 4. If you or a loved one is affected by the issues raised in this article, visit: www.eatingdisordercentrecork.ie