On a cold afternoon in August my teenage daughter and I walked into a mental health facility for youth. We were there to meet our therapist and she was ready and waiting for us.
“Thank you for coming,” she greeted us, as we were ushered into a meeting room furnished with couches.
“We are here because Clare* has been diagnosed with anorexia nervosa,” she began.
“Anorexia is a mental disorder and of all the disorders it has the highest mortality rate.”
She went through all of the ways it was impacting Clare’s health, ending with seven words that chilled me to the bone:
“We are here to save Clare’s life.”
On the car ride home my daughter downplayed her words. “She’s just trying to scare you,” she said. “It’s not that bad.”
But that was a part of her illness too – a lack of insight into how ill she was.
It was that bad.
Over the past four months my amazing firstborn had slipped off the bottom of the charts in weight. Her mood was often low and she was constantly getting sick. She had begun falling asleep in class, her grades had slipped and she struggled to get out of bed most mornings.
Her ordinarily fitting clothes hung off her, her eyes were shadowed in dark circles and she was no longer menstruating.
She always wore black.
I hadn’t noticed the weight loss to begin with, then all of a sudden she was just alarmingly thin.
Her younger sister had tried to warn me: “Clare’s not eating, Mum,” Emma* said more than once.
But I’d brushed it off. I’d struggled with eating disorders myself as a teen, and had mindfully raised my children to never worry about what they ate.
It was when Clare finally said something, though – dropping it so casually into a conversation I could almost have missed it, it suddenly became real.
“I think I’ve got an eating disorder,” she said. “I started dieting and now I can’t stop.”
I called our GP and by the end of the week Clare had been referred to youth mental health services. It took a few weeks to get into therapy because the waiting list for youth suffering from eating disorders is heart-breakingly long.
By then she was even thinner.
Recovery begins
Once we were in therapy I learned that Clare had gone to extraordinary lengths not to eat – giving away her school lunches, pretending to make porridge for breakfast then throwing the raw oats in the bin and leaving ‘dirty dishes’ in the sink, hiding uneaten food around the house, lying to me at mealtimes about having already eaten, pacing for hours to burn off calories.
She had cut an alarming variety of foods from her diet: all dairy, all fruit, all fats, all sugars, bread, pasta, rice, potatoes, kumara, avocado, peanut butter, meat.
The week before therapy began she didn’t eat for two days.
How had it started? She’d wanted to lose weight for her high school ball. And I could leave my explanation there, but it’s just not that simple.
Sure, there were also the unhelpful comments that Clare took to heart. A bitchy remark by a friend about “only certain body types looking good” in the style of dress that Clare wanted to wear to the ball.
An extended family member asking her how much she weighed then responding by saying her ethnicity ‘tended to be heavy-boned’.
But it’s still not that simple because if it hadn’t have been that event or those comments it would have been something else.
New research suggests that anorexia is genetic, and then hormones, nutrition and life experiences have a hand in determining whether those who are predisposed will go on to develop it.
Writes Walter H. Kaye, director and eating disorders program professor from the University of California San Diego (UCSD), “Most children and adolescents can diet and then go back to their normal eating behaviours.
“When two young women decide to lose a few pounds together, and one gives up after a week and the other not only continues but becomes underweight and obsessive, it is likely that the difference between them is a difference in how their brains respond to inadequate nourishment.
“The one who ends the diet is responding to the biological need to eat normally. Neuro-imaging studies indicate that anorexia nervosa patients are able to ignore urgent signals from the brain to eat that most people cannot resist.
“There is also evidence that anorexia nervosa patients may feel less reward from eating and feel some relief from anxiety when under-eating.”
By the time we got into therapy Clare was so ill she was eligible for hospitalisation, but we chose to start her care at home because it’s less ‘brutal’, and what we had to do at home we would have had to do anyway after she came out of hospital.
I took two weeks off work and she took two weeks off school and I had one job: to refeed her.
My brief was clear: she had to gain 500g to 1kg every week.
The first step in treating anorexia is to restore the sufferer to a healthy weight.
Food is their medicine – because when your body is starved and your weight drops too low every organ in your body, including your brain, begins to shut down. Your blood pressure and heart rate drop, and you’re no longer capable of even recognising your own deterioration.
“The longer they are malnourished, the harder it becomes to eat normally again,” Walter H. Kayes explains.
And the harder it is to reverse changes to the brain that can have life-long effects on the way sufferers think, feel and behave.
I fed Clare six times a day, high-calorie meals, as much as I could get into her. My instructions were to give her no say over what she ate, when she ate, or how much she ate. She wasn’t even allowed to help me prepare meals.
Then I had to watch her after every meal to make sure she didn’t bring it up or pace it off.
It was grim and it was hardgoing. She didn’t want to eat and I hated making her.
But in many ways she was endearingly compliant.
I made one phone call before we started which gave me the strength to see this through. It was to a woman called Anne whose daughter was still battling anorexia in her fifties. Her daughter was in poor health, had brittle bones and had never married or had children. She had given up her dream to be an artist to instead work with food.
It seems ironic but anorexia patients typically love working with food because it’s the next best thing to eating it.
At the height of Clare’s illness she baked prolifically, producing trays and trays of sweet treats that she literally dreamed about eating every night.
Anne told me, “Whatever you do, don’t do what I did.”
She felt she’d left it too late, not taken her daughter’s eating disorder seriously enough.
But the truth is very little was known about anorexia in the 1970s. It wasn’t her fault, nor was it her daughter’s.
By the end of our two weeks at home Clare had gained more than two kilograms.
We returned to work and school and continued with the refeeding. Clare’s school nurses would watch her eat at lunch times and we would Facetime if there was no one I could call on to supervise her. I would leave for work later in the mornings and get home earlier in evenings so that I could sit with her for breakfast and dinner times.
My manager was hugely supportive and so was Clare’s school.
Clare continued to make steady weight gains (which reduced her to tears at her weekly weigh-ins) and at the beginning of October we celebrated the return of her period.
A school trip to Cambodia was coming up that Clare had been accepted to go on and it was time to make the call – was she well enough to take the trip?
Clare had been working hard all year to fund the $5000 trip and had paid for it entirely out of her wages from her after-school job as a checkout operator.
But the medical team assessed her and their answer was… no, she couldn’t go.
Even with the progress we’d made, her health was not stable enough and she was likely to lose weight in Cambodia, which would have been a major setback.
Clare was devastated.
While it was awful to see her go through that if you can find a silver lining, it was that it made her angry.
This was the first time anorexia had taken something from her (in her eyes) and while at first she blamed me then her therapist and the medical team, she ultimately recognised it was anorexia – and vowed to make sure it was the last thing it took from her.
There have still been setbacks. An Instagram post, in which someone lamented how they were no longer as thin as when they’d been anorexic, set her pacing again.
Some of the lighter foods that she would only eat when she was in the grips of the illness have reappeared and I am watching.
The mindset of an anorexic can take much longer to change than their weight.
But Clare is now at 92 per cent of her ideal height to weight ratio, and in a better place to be able to fight regressive behaviours, with family support.
Therapy continues every week but it’s shifted from talking about refeeding to exploring her triggers and finding ways to manage the way she responds to them.
Clare has taken measures herself – putting herself on a digital detox, for example, because she was finding that mindlessly scrolling Instagram was exposing her to multiple triggers each day, in the form of pop-up ads for weight loss and bikini body posts.
It takes three years of being back at your ideal weight before your brain function fully recovers when you’re recovering from an eating disorder, so we still have a way to go before we can say anorexia is behind us. But we’re on track.
In November we attended an awards night at Clare’s school where she was recognised for academic excellence. Despite all the challenges she had faced with her illness she had still managed to win a university scholarship, for which I was so very proud of her.
But it was the second, unexpected award she was called up for that brought sudden, stinging tears to my eyes. Clare was recognised for showing resilience and perseverance in the face of adversity.
I was moved that her teachers had honoured her for what she had been through.
The tears started streaming down my face and they wouldn’t stop.
*Names have been changed.
Where to get help and what you need to be aware of:
The approach we used to treat Clare is called Family Based Treatment – of all the approaches, FBT has the highest rate of success. It works on the premise that the whole family is involved so that anorexia is ‘exposed’ and has nowhere to hide and manifest. This meant Clare’s younger siblings attended some therapy sessions with us and they were in on the refeeding plan; they were given support roles.
Refeeding is gruelling for parents – it is a heavy load to carry. What helped me through was getting out and going for runs. As the treatment progressed so did my distances. In December I completed a half marathon. Keeping up contact with friends was also great.
It’s important to remember that your child is ‘not him or herself’ when in the throes of anorexia; it’s almost like they become a different person who can be deceptive and secretive in their quest to avoid eating. Our therapist used to constantly say ‘you are dealing with anorexia here, not Clare’. Having this awareness helped me to stay calm and not get angry or upset with Clare.
Don’t be afraid to ask friends and family for support – even if they can just sit with your child for one or two meals a week to give you a break.
When all of the focus is on your child with anorexia their siblings can start to feel forgotten about. Make sure you make time for your other children too and acknowledge them for the part they are playing in their sibling’s recovery. A few weeks into therapy I took my kids to Rainbow’s End theme park as a way of thanking them for their support. It was a great day.
If you’re concerned your child may be suffering from an eating disorder, your first port of call is your GP. Your GP can refer you on to an eating disorder specialist.
There are support groups available for families:
EDANZ is a support group run by volunteers who have been affected by eating disorders (either as parents, caregivers or recovered patients).
The Mental Health Foundation Of New Zealand lists support groups on its website.
