When Claire Turnbull’s grandmother died aged 93, her family found diet pills and diet shakes in her kitchen. To Turnbull, it was no surprise. Though her grandmother was never formally diagnosed with an eating disorder, it was obvious she lived with one her whole life.
“She never got over it. She was always visibly semi-dieting, always doing funny things around food,” Turnbull says.
When most of us picture a typical person with an eating disorder, chances are it’s not a nonagenarian. It’s far more likely to be an adolescent girl, painfully at war with a ravaged body. But contrary to the many myths about eating disorders, they affect people of all ages, genders and body sizes.
Young women do make up a large proportion of those suffering from eating disorders including anorexia nervosa, bulimia and binge eating disorder. But there’s a trend for these to show up in midlife and older women and this overlooked group is starting to become the focus of attention.
Evidence suggests up to 13% of women over 50 have disordered eating patterns. Other studies note it’s likely this is an underestimate since older women are often underdiagnosed. A recent study of women over 60 diagnosed with binge-eating behaviour found a majority reported the onset of their illness came in midlife or later.
Experts in this field say it’s no surprise this is coming to light. Specialist eating disorder dietitian Amy Judd says she’s noticed more older women seeking treatment both in her private practice and her work in the public health system.
“When you look at women across the spectrum, we see puberty and menopause as two specific time periods that are associated with lots of changes to your body that can happen outside your control. They’re periods when we might see an increase in vulnerability to either developing an eating disorder or having a relapse of symptoms if you’d had one previously.”
It’s in the genes
Another myth many of us have grown up with is that eating disorders are driven by family dysfunction or a search for control: if I can’t manage other things in my life, the story goes, I’ll control my body. In the1980s and 1990s, TV movies about tortured, overachieving teens or such celebrity tragedies as that of singer Karen Carpenter, who died from complications of anorexia, helped fuel such beliefs.
We now know it’s not that simple. Although personality traits such as perfectionism, obsessiveness and a tendency to form habits quickly are common among sufferers, taking a diet “too far” won’t tip everyone into illness. Some people are especially vulnerable, and that’s now understood – particularly in the case of anorexia – to be down to more than psychology. It’s in our genes.
Dr Roger Mysliwiec is an Auckland-based eating disorders specialist who’s worked in this area for more than 30 years. “From research over the past two decades, including genetic studies, we have a much better understanding about the neurobiological underpinnings [of eating disorders],” he says. “In essence, we can say this is a metabo-psychiatric disorder: it is not just a psychiatric illness; there are metabolic factors that contribute to its cause and maintenance. In order to have what I would call true anorexia nervosa, one also needs to have at least some of these genes.”
Mysliwiec says the things previously thought to be the causes behind eating disorders can have an effect, but they’re more akin to triggers that can set off the disorder when they interact with the genetic makeup of a vulnerable person.
“This idea that it’s just in the person’s head, or it’s about control, the family or something in childhood … these can all be factors that provide part of the background but there is no evidence that they are a causal factor. If we look at trauma, yes, a significant event that wasn’t properly processed can [contribute to high distress]. But it’s not the cause.”
Megan Tombs runs the Eating Disorders Association of New Zealand, a nonprofit organisation that supports carers of people with these conditions. “The genetic disorder is the pistol and the circumstances are the trigger,” she says.
“What might happen is an individual who has this gene sails through life – everything’s fine. Then all of a sudden they are restricting calories either intentionally through dieting or unintentionally through illness, heartbreak, stress, or even nil by mouth before an operation. It could be intentional … a dieting fad like cutting out sugar or fasting. It doesn’t have to take long. But if you are in calorie deficit from restricted intake, then the brain can go into starvation mode. In these vulnerable individuals, there’s a paradox, in that when they restrict food, their dopamine [the feel-good brain chemical] goes up.”
Mysliwiec says a number of genes can come into play. In order to develop what he describes as “malignant anorexia”, enough genes in the right combination are required.
Weight loss switches the genes on, kicking off a process patients often describe as the disorder taking on a life of its own.
“In the beginning, it makes them feel good, then all of a sudden they notice, ‘Oops, I can’t stop this any more.’ And then the compulsion sets in.”
To Turnbull, this all makes sense. Eating disorders are in her genes, she believes: her mother and brother have also suffered. Her own anorexia as a young woman, followed by bulimia and self-harm, were part of a long struggle. She now uses her experience in her work as a nutritionist.
“It’s still a journey for me. I think I still have body dysmorphia. I think I will always have that and I have accepted it. I think having children helped me because I could see that my body change led to something good.”
Hormonal turbulence marks the onset of eating disorders at puberty and perimenopause in different ways. At puberty, says Mysliwiec, the change of reproductive hormones moves young women towards higher and stable oestrogen levels. At perimenopause, it’s the reverse, but hormone levels can fluctuate wildly. “We’re also dealing with a different brain. The adolescent brain is still underdeveloped in terms of its frontal cortex and its ability to regulate emotions and urges that pose an additional vulnerability, whereas for a mature woman, that obviously is not the case.”
In midlife, though, a lot of life events come up that can be potential triggers. “It’s not just a time of biological change; it often coincides with life changes – children leaving, or a more challenging time for relationships. It can be a time when maybe longstanding marriages or partnerships end. So there are questions about identity. These are all psychosocial stress factors that coincide with a time of hormonal changes as oestrogen fluctuates.”
Those fluctuations can cause changes in body shape, adding another self-image challenge.
Mysliwiec describes three different groups of midlife women showing up with eating disorders. First, women who may have had the disease when younger and recovered, only to find it resurfacing in their 40s or 50s. “This is a significant risk period for people who have once had an eating disorder.”
There are also women who’ve battled an eating disorder their whole lives, are still suffering and may see a ramping up of symptoms. Then there are those who are dieting for the first time, which then can lead to serious symptoms. This group would be more accurately described as having “severely disordered eating”, says Mysliwiec, leading to significant body image issues. “It often will not meet full diagnostic criteria for any of the main eating disorders – a more clinical term would be sub-threshold eating disorders.”
Orthorexia – a preoccupation with healthy, pure or “good” food – is not officially a diagnosable term, but Mysliwiec says it has some relevance here, too. “It sits sort of on the fringe. It’s when the preoccupation with health leads to pursuing certain kinds of diets.
“It is something we would also see [in midlife women]. The behaviours can get closer to what we might see in bulimia … Even if it’s not self-induced vomiting, they may start using laxatives and have a strong preoccupation with and fear of weight gain.”
He stresses the suffering in these women is just the same as in those with diagnosed disorders. Body-image concerns, fear of weight gain, dieting behaviour and overvaluation of weight and shape “have a significant effect on their physical health and functioning, wellbeing and enjoyment of life”.
There are plenty of other external factors that might tip a previously healthy woman into disordered eating. Our culture is saturated with the idea that women’s bodies should be forever youthful, slim and flawless in order for them to stay relevant. Social media offers an endless stream not only of pretty young things in bikinis, but also of aspirational “wellness” role models in their 40s and 50s insisting that you, too, can shrink your “meno belly”, do chin-ups and get a six-pack no matter your age. It’s a relentless pressure many women struggle with.
And women who grew up in the 70s and 80s did so immersed in diet culture. “My mum was anorexic to the point where she would black out from starving herself,” says Turnbull. “But at the time, it was kind of accepted that, ‘Oh, you’re dieting’. She had been a chubby child and got validation from being thin, which, back then, was very appealing. Women in our 40s and 50s grew up at a time when dieting was normal and encouraged. And commenting on your body was completely acceptable.”
Those conversations from childhood stay with us, Turnbull says. “You may have felt quite slim and fit and healthy all your life, then you hit menopause and your body sometimes suddenly changes. And you feel like you’re being shamed again by your grandfather who was going, ‘Oh, haven’t you got a lot of meat on your bones.’”
The eating-disorder stereotype (young and thin) means older women in larger bodies can face a double-whammy of weight stigma and ageism, leading to underdiagnosis. But experts say these disorders don’t discriminate. And it’s at this intersection that older women have been left out of the research.
Low BMI is part of a diagnosis of anorexia. Bulimia and binge-eating disorders, which tend to be more common in midlife women, can show up in people with average- and higher-weight bodies. Atypical anorexia is also now recognised as a diagnosis. That’s when someone meets all diagnostic criteria for anorexia, including weight loss, but doesn’t have a low weight.
In larger people, still, these illnesses are often missed. Amy Judd says the overwhelming narrative that thin equals healthy – even among medical professionals – can be damaging. “Particularly for women I work with who are in larger bodies and struggling with quite severe disordered eating … They will often go to medical appointments and the advice they’re given is that if they lost weight, that would help. For them, with their psychological struggle with their eating, that’s the last advice they should be given … It almost amplifies their disordered behaviour.”
Dietitian Rachael Wilson, who specialises in disordered eating and body image, echoes this. “You might see somebody who is severely restricting [food] and over-exercising, but they’re in a larger body. The medical consequences of that are the same as if they were in a smaller body. They’re still at risk of problems with their respiratory rate and their heart rate, and their blood pressure and blood sugars dropping. But they’re not necessarily taken as seriously when they are seen medically.”
Wilson says what may be diagnosed as a disorder in a smaller-bodied person can actually be prescribed as a treatment for a larger person. “I’ve known people who’ve been doing four or five hours of quite intensive exercise a day. And they’re dropping weight, and that’s being commended. Nobody’s going deeper to see: what are they doing to achieve that?”
Finding a way back to health is not an easy road. It requires intervention from a team of professionals including counsellors, dietitians, doctors and nutritionists.
Judd says there’s a lot of shame and guilt associated with seeking treatment and older people feel they should know better.
“People often say, ‘I’m not really that bad’, or, ‘I’m not really that sick’. I think when it comes to eating disorders, a lot of the imagery that comes to mind tends to be of people in their teens.”
Often she’s the first person a client has ever talked to about their eating problems. “Ironically, there seems to be a lot less stigma connected to seeking support from a dietitian versus seeking support from a therapist.”
She stresses, though, that recovery depends on the support of a multidisciplinary team and treatment will be different depending on the type of disorder.
Judd and Wilson both use an intuitive-eating approach with their clients. Wilson uses cognitive behaviour therapy and says it is particularly effective with binge eating as people learn to adjust their mindsets around food and eating.
“We know when people have been on cycles of dieting and restricting, their hunger and fullness signals don’t kick in any more. The more we override hunger and we just ignore it, our body stops giving us that feedback. And the same with fullness. If we binge regularly and eat more than we’re hungry for our body stops telling us that we’re full.”
Recovery takes time, says Wilson. “The disordered eating has had a lifetime to build. We’re changing those neural pathways in the brain. It takes time to change them to do something different and you need to actively work on it.
“For a lot of people simply eating regularly makes a massive difference in terms of reducing bingeing.”
Intuitive eating teaches that all foods can have a place in the diet, something that can be difficult for people to practise. “We want to get away from feeling shame and guilt around eating and tune in to how it feels – what feels nourishing, what feels good.”
Learning to eat intuitively can be liberating, Wilson says, “because you’re not looking at rules and restrictions and ideas that you can’t eat this or that. It gives back people’s freedom around food.
“So much of life revolves around food. And if you’re always on a special diet or you’re always restricting, having a life is difficult. Whereas when all foods can have a place, and you can be in control of when you eat them or don’t eat them, there’s a lot of freedom in that.”
Resolving body-image issues can be harder. But it is possible, Wilson says, to get to a place of acceptance.
“I don’t really like the idea of body positivity because some people might not ever get to the point of loving their body. So it’s about accepting their body where they are and seeing that their body deserves kindness and compassion even if it’s not what they want it to be.”