Boys can get anorexia too. A mother's story.

by MIA FREEDMAN

I’ve just read The Boy Who Loved Apples.

In just a day or two, I inhaled it.

It’s written by an Australian woman named Amanda Webster whose son Riche developed anorexia when he was 11 years old.

Her book tells the story of the long, agonising journey to save her son’s life while also dealing with a husband, two other young children and a medical establishment that barely understood Riche’s illness – let alone how to treat it.

It’s a story of a family, a mother’s love, and a broken little boy who she must help find his way back to her and to life. For a while, he became so consumed by anorexia, Riche became convinced he could catch calories by touching things and even absorb them through air and soil.

How do you bring someone back from that?

I interviewed Amanda and asked her about body image, media, treatment options, warning signs and whether you can ever truly recover from anorexia…….(you don’t need to have read the book to understand the interview, it all stands alone).

Mia Freedman: What were some of the early signs of Riche’s anorexia?

Amanda Webster: Riche showed the classic early signs of anorexia—easy to see through that fabled retrospectoscope. He decided to become a vegetarian, not necessarily the first step on the slippery slope, but he was depressed and anxious by this point (related to family and social concerns) and was becoming quite obsessive, all factors that made any kind of dietary restriction dangerous.

From the outset, he was a poor vegetarian.He refused lentils and pulses, eating cheese, tofu or egg-based main meals only. Around this time, he started taking an interest in recipes and their calorie content. And he seemed overly concerned about the issue of childhood obesity, even though he’d never been fat himself.

Meanwhile, he was exercising a lot. He belonged to a local circus group and he was always outside doing cartwheels or inside doing bench presses on the sofa or pushups in the hallway. Next, he started cutting back on the quantity of food he was eating. At the same time, he abruptly gave up the circus routines and took to walking for up to five hours a day on a trail on our property. He cut back on water and looked emaciated.

But the early changes were insidious and the illness already had a stranglehold by the time I realised we had a problem. A word of caution: the retrospectoscope should be handled with care. It should come with a positive filter that transforms hindsight into valuable lessons. It should never be used, as I did, as an emotional stick to beat my husband and me over the head.

Mia: You were determined from the outset that Riche stay out of hospital. Why is that?

Amanda: Two reasons. The first is that I’m a graduate of the 1980s medical school system. In those days hospital treatments were both extremely horrible and largely ineffective and I suspected that some of those punitive practices still existed.

Why would you subject someone you love to an experience like that unless you thought it would help them? I also worried about the potential separation. Parents wore the blame for anorexia—a situation that still exists to some extent—and access to their children was restricted. My son was only 11 years old and I thought it would be hugely traumatic for him to be separated from his family.

The second reason was related to Riche’s symptoms. When something goes wrong with the heart, a person experiences chest pain and might have an abnormal heartbeat. A problem with the lung might produce a cough. When something goes wrong with the brain, the symptoms are often behavioural.

This certainly happens with anorexia. In Riche, the symptoms were extreme. He believed that calories could travel through the air and in through his skin. This made him very agitated around food. As his mother, I knew the best shot at restoring his nutrition would be through keeping his environment ‘safe’ and controlled and I didn’t see how that could be achieved in hospital. At home, he could concentrate on the food—or protein shakes—without the threat of food trolleys or chocolates on someone else’s locker.

Mia: How close did you get?

Amanda: Too close. By the time, I’d found an outpatient treatment centre, Riche’s heartbeat had slowed and he was dehydrated. I took a risk and this is not something I recommend. We’re very lucky he’s still alive. If I’d had the option of short-term hospitalisation followed by family based therapy, I would have taken it. But I didn’t. Fortunately I found the clinic and we started a rigid regimen of protein shakes.

The other near miss was the night we had the showdown over water, which Riche believed would make him fat. I had promised him I wouldn’t put him in hospital but the reality is, I would have had to if he hadn’t finally managed to drink a bottle of water that night.

Mia: How, as his primary carer, did you decide whether to try and pull him out of that delusional world of anorexia where he could ‘catch’ calories by touching things or through the air or whether to just enter into that world of magical thinking and try to work within those parameters?

Amanda: I had no choice. I couldn’t pull him out of that delusional world; it was caused by starvation, and the only way I could turn that around was by restoring his nutrition. The best way of doing that was by entering his world to a degree. I washed my hands, scrubbed the kitchen bench, kept ‘banned substances’ like chocolate either hidden or out of the house, took part in an exhausting Q & A session every single time Riche drank a shake, and lied when asked if the soy milk had got near other food in the supermarket. The priority was getting nutrition into Riche and I had only one set of hands and one increasingly tired and overwhelmed brain.

Mia: You get a real sense from reading the book that you were in survival mode. What are the best resources for parents who are struggling with a child who has an eating disorder?

Amanda: The F.E.A.S.T organisation is an amazing resource. I came across it in its early days, when Riche was well and truly recovering and I was falling apart at the seams. The online parent forum provided me with great comfort. At last, I was among a community of parents who understood what it meant to live in anorexia-land. More than just a cyber-shoulder to cry on, it provides real support.

Parents can post questions about their child’s treatment or progress for other parents to answer. Experienced parents act as moderators. The website also provides a list of Family Based Therapy treatment providers (Australia included), articles on eating disorders, recipes for small footprint but big impact meals and much, much more.

In Australia, the Butterfly Foundation is a good resource.

The reason I encourage families to seek out Family Based Therapy is that it’s cost-effective, has good results, and is the only evidence-based treatment for anorexia.

Mia: What are the biggest misconceptions about anorexia and people who suffer from it?

Amanda: Sadly, as a recent response to Amanda Dallimore’s essay on Mamamia shows, the attitude persists that anorexia is a lifestyle choice and that it represents some kind of desire to control those around them. Not true. Gripped by illness, my son had as much control over his behaviour as I do over whether the sun rises. Anorexia is a biological illness. The illness is in the driving seat; the sufferer has lost control.

The other thing that saddens me is that stigma persists. Brain illnesses are seen as different to illnesses associated with other parts of the body, I guess because strange behaviour can be more confronting than a cough or a plastered leg. But really, they’re more similar than different: in each case, a part of the body is broken and needs fixing.

Mia: Were the challenges of having an anorexic son different to those you’d have faced if Riche was a girl?

Amanda: Different? Yes. More challenging? No. Treatment options then were abysmal regardless of age or gender. Fortunately that situation is changing, although I think it’s still incredibly difficult for adult sufferers and their families, who often are forced to watch helplessly from the sidelines.

The other aspect to consider is how do you fill in time with a chronically and seriously sick child? This is often challenging, no matter the gender or the illness. I know Riche was very lonely. I had to get creative because the day program activities such as sewing and scrap-booking were never going to work, even if Riche could touch the material, which, of course, he couldn’t. Games Workshop’s ‘no food or drinks’ policy proved a blessing; the young men we encountered there were saints.

Mia: You found a sense of salvation at Footprints Of Angels – the treatment centre run by Jan Cullis whose daughter Bronte had anorexia and has since recovered. But you were not entirely satisfied with some aspects of that program. Looking back – again with the wisdom of hindsight – would you still see that as the best option or would you go a different way?

Amanda: Riche and I moved from Mullumbimby to a rented townhouse in Brisbane so that he could attend the day clinic. I still believe Footprints was the best option available to us in Australia at that time and my whole family will forever be grateful to Jan, Graeme, and Bronte. Without them, things would probably have turned out very differently. We met with compassion at the clinic and they insisted on regular nutrition and medical monitoring, both vital.

My main concerns were that I didn’t think Riche needed to see a dietician weekly or his therapist the other four weekdays.An hour a day with these people seemed to make no difference to the process of talking him through his shakes. Fear took over and I doubt Riche gave a single thought to anything other than the protein shake in his hand and the sound of my voice. As a doctor (albeit a non-practicing one), my concern was that the cost of treatment was beyond many families. I knew of at least one family who sold their home to help with their finances.

There had to be a better way and now there is. You guessed it: Family Based Therapy. It originated at the Maudsley Hospital in London and was previously referred to as the Maudsley Method. Once a fortnight, trained therapists meet briefly with the sufferer and at length with the sufferer’s carers. The therapist helps carers to figure out how to get through meals and manage behaviour. For the most part, families figure out the meals, the online forum I mentioned being a valuable resource in this regard. Control of food choices is given back to the individual when they’re sufficiently recovered and therapy to help with resuming normal adolescent life is provided when thought processes are functioning as they should.

Mia: Was there a turning point in Riche’s recovery or a series of them?

Amanda: It was a watching-the-grass-grow situation for a long time. Riche was slow to put on weight. But gradually, I noticed a lessening in the intensity of his rituals. The clinic closed over Christmas and I decided there wasn’t much point in hanging around Brisbane. I missed the rest of the family desperately and my mother, who had been living with us in Mullumbimby, had just died and I felt the need to be home.

Those two weeks turned out to be a turning point but only because consistent nutrition over the preceding eleven months had led to a reasonable level of brain recovery. The milestones piled up surprisingly quickly after that: first sandwich, first day back at school after more than a year’s absence, first haircut since the onset of illness and, eventually, first post-illness meat. So many milestones, many accompanied by secret tears on my and my husband’s part.

Mia: How was your own recovery afterwards? When Riche began to recover, it happened almost shockingly quickly as you describe it. And it took you some time to catch up. You talked about having PTSD.

Amanda: The toll any illness takes on families is huge. How long did it take to repair that damage and how did you go about it?

My husband Kevin and I worked very hard to put in safety nets for our other two children and I think they have fared well. Kevin and I both suffered from PTSD, I think. Kevin perhaps slightly less so because as you know from the book, I bore the brunt of the anorexia behaviour and pretty much fell apart when Riche recovered. In fact, I was starting to fall apart in Brisbane. I remember leaving Riche at Games Workshop near the end of that year and going to see the film Cold Mountain, starring Nicole Kidman and Jude Law.

When Jude Law’s character died, it was as though there’d been a death in the family. I started sobbing and couldn’t stop. I slunk out of the movie and into the bathroom and splashed water on my face but I couldn’t stop sobbing and there were no paper towels, just those hand dryers, which were no help at all. Back home in Mullumbimby, I joined a writing class because I knew I needed to sort through what had happened. Later I started therapy. Best thing I did.

Mia: Do you ever really ‘recover’ from an eating disorder or is it like being an alcoholic and you will always have to watch for certain triggers?

Amanda: Riche is recovered but his genetic predisposition to the illness remains, which means that he should never go on any kind of restrictive diet. As a family, we’re huge fans of the concept that there are no bad foods. Sure it’s great to eat lots of fruit and vegetables but treats are okay too. The problem is that our society’s preoccupation with body image persists. It makes me sad. So much pressure—and not just on young people.

Mia: So much is written about the media and body image and the focus of that is usually on girls. But we know that poor body image is now almost as much of an issue for boys as it is for girls – in no small part because of the images of men seen in magazines and advertising.
What do you think about that? And was it a factor for Riche?
More broadly, is it something you hear about with families and health professionals in eating disorders?

Amanda: Body image was an issue for Riche in an indirect way. He read everything he could get his hands on and one day he showed me a magazine article that cited depression as a risk factor for childhood obesity. It wasn’t so much his pecs and six pack but size definitely mattered. Of course obesity is an issue that does need to be addressed but with the benefit of that retrospectoscope, I can see how toxic this kind of discussion is to children like Riche.

It’s something parents need to be aware of and mediate. It’s likely that increasing awareness of body image is contributing to the increase in male anorexia but I suspect the pressures are still greater on women. Not sure my sons would agree with me. My mother always said, “It’s what’s inside that counts.” She was right. Sadly, she was also wrong.

(post continues after gallery)

Mia: How is Riche now? Do you ever talk about his illness with him or is it a dark period you all try to forget?

Amanda: Riche is very well, thank you Mia. He occasionally talks about that period and says he has no regrets: the illness has helped make him who he is now. But he doesn’t let it define him. He’s at university and mostly he’s thinking about his next exam or last week’s assignment or if he’s going out with friends. He likes to remind me that it took me longer to write the book than it took for him to recover from his illness.

My other two children prefer not to talk about that period either. Siblings are often the forgotten victims of anorexia. Andy and Louise were very young and it was tough—I lived apart from then six-year old Louise for almost a year, Andy for five months. None of could ever forget what happened but we can’t change the past. What we can do is tell our story in the hopes that it will shine some light on the illness. A salvage mission, if you like.

Amanda Webster grew up in Kalgoorlie, the goldmining town of Western Australia. She graduated from the University of Western Australia as a doctor, following in the footsteps of her father and grandfather. She left medicine to raise a family with her husband, Kevin. Amanda turned to writing after her son Riche’s illness and is currently an MFA candidate in the low residency program at City University of Hong Kong. Her work has appeared in several US literary journals. After eight years in the beautiful Byron Shire, Amanda has returned to Sydney where she lives with her husband and two of her three children.