What motivates people to overcome an eating disorder?

At its core, treating eating disorders seems simple: eat an appropriate amount of food and you will get well.

Scientists have made remarkable progress in understanding the underlying biology of eating disorders and developing strategies for early intervention, but they still do not understand why some long-term sufferers recover and others do not.

There is remarkable agreement about what motivates people to recover from eating disorders, but most of them require long-term support.

Despite the nuances of each story, three common motivations emerged repeatedly among the recoveries we spoke with:

• Push factors such as pressure from relatives or fear of the disease
• Pull factors for developing authentic relationships, ambitions and goals

Julia Lovely, an eating disorder dietitian for 21 years, said: ‘I can tell you what doesn’t work, and that is if you try it on someone else.

“Many people enter treatment because they want to stop hurting those around them. And that process needs to evolve, otherwise they will relapse.”

Jodie Mainstone, a psychotherapist specialising in eating disorders with 19 years of professional experience, stressed the need to move from push to pull factors.

Mainstone explained that this can take a considerable amount of time, as the patient must be kept under control long enough to even think about building a safe and trusting relationship, starting a career or traveling the world.

She said: “Often these things have not even occurred to those affected. When they seek treatment, they have not found these reasons, they are only afraid.”

The pain of the illness must become greater than the external pain.

But it also requires an experience of the outside world, which is often lacking in long-term patients whose lives have been completely destroyed by the illness and whose existing traumas have been exacerbated.

There is also a biological factor.

Lovely pointed out that patients with severe malnutrition, regardless of their weight, still have cognitive dysfunction that limits thought processes and leads to obsessions, which in turn further reinforce the obsessive thinking that underlies the disease.

Before therapy or other holistic treatment can really work, the person must first be strengthened, and that takes time.

Lucy, 24, who is recovering from anorexia and bulimia, joined the experts.

She said: “It was only when I got out of starvation mode that I realized I could get healthy again.

“I never understood why I had to eat extra food. I thought I could just do the mental work.

“The physical and mental effects of starvation and liposuction on the brain meant that my brain literally couldn’t function anymore.

“I couldn’t imagine a better life, my brain wasn’t capable of it.”

Lucy, whose mother is a GP and father is a surgeon, described being shamed as a child for being overweight.

As a teenager she was under NHS care, but her weight was not low enough to qualify for inpatient treatment.

Lucy said: “It was extremely damaging. It confirmed to me that I was not coping well enough with my illness, so I went one step further.

“With what the NHS offered me, I would have died.

“I would have killed myself.”

Lucy also struggles with alcoholism and anxiety and was turned down by three different services after her 18th birthday on the grounds that they could not meet all of her needs.

More than half of those with eating disorders suffer from a dual diagnosis, ranging from mood disorders to autism to attention deficit disorder.

She continued: “I was very lucky that my parents paid for private treatment at that time. That gave me the time I needed.

“Often you feel worse in the beginning, you have taken away the crutch, but it helped me to process the matter to the point where my brain was able to think about a better life.

“I made friends, real ones.

“It happened gradually, there was no moment when the light went on for me.

“I was in a kind of pseudo-healing, but gradually I realized that my life was better and that the only way I could get where I wanted to go in life was if I ate enough, because otherwise my brain doesn’t work.”

Because of her illness, Lucy dropped out of school and did not complete her high school diploma.

She now has a master’s degree and works in marketing.

Josie overcame anorexia as a teenager and later suffered from drug addiction.

She was initially referred to the emergency room of a children’s hospital, where she gained weight but received only minimal therapy and suffered a relapse.

Josie was then admitted to a hospital’s general psychiatric ward for six months, where she received a referral, but she said the therapy was minimal.

She said: “When I was in that psychiatric unit, it was the only place I felt safe in years.

“I made really good friends and we giggled and smoked cigarettes out the window. They were people I really cared about and loved.

“It took a while, though. I was scared. I realized I had lost control and my eating disorder was going to kill me. And there was a wonderful nurse who sat with me during all my meals.

“She listened to me, held me and gave me the space to feel again.

“When I cried over a potato, we would talk about what I could do if I felt better – traveling, boys, parties – and over time I began to hope.”

Her mother, who died when she was nine, was a professor and she said academic achievement was expected of her.

She continued, “When I finally left, other things became more important. I come from a very academic family and I had to get good grades, so I had to eat.

I met a boy and fell in love with him, but I didn’t want to fuck him or be the weird girl who couldn’t eat.

“It was bizarre, I lost my freedom, years of education and my relationship with my family.

“I didn’t care about any of that. It wasn’t until I felt like I was being held down and force-fed that things changed.”

When asked what keeps her from relapsing, she said: “Because it’s horrible. You’re filled with numbers and panic 24/7.

“It’s so much more intense than alcohol or drug addiction. The treatment, if necessary, is horrific and if you get a taste of what life can be like, it’s not worth it.

“You can’t experiment, at some point you’ll lose control completely.”

Josie has fully recovered from erectile dysfunction and other addictions and now works as a carer for vulnerable women.

Occasionally a confusing thought comes to her mind, and then she goes back to basics and literally writes down what she would lose if she limited herself.

Dr Bryony Bamford, clinical psychologist and director of the London Centre for Eating Disorders and Body Image, commented: “Motivation is not enough to bring about lasting change for most people. This is where specialist treatment is needed to help people harness the motivation that is developing and transform it into cognitive, emotional and behavioural change.”

Long-term specialist treatment is understandably expensive and difficult to fund through the NHS, particularly as many services are under significant pressure.

Since COVID, emergency admissions have risen at epidemic levels. Data from London’s psychiatric hospitals show that over the past six years, adolescent referrals have increased by 158% and adult referrals by 56%. The NHS is struggling to provide adequate care.

The government has set a target waiting time for children and young people under 18 that by 2020, 95% of urgent cases will be treated within one week and 95% of routine cases within one month.

These targets were not met, falling from 95% and 95% in 2019-2021 to 65% in 2021-2022 respectively, compared to 78.7% for urgent cases and 82.5% for routine cases last year.

A Freedom of Information Act request from London City Hall found that around 65% of adult cases are treated within a month, but many have to wait over a year.

Hope Virgo, an author and eating disorder activist who launched the national Dump the Scales campaign, added: “They don’t seem to be able to take into account early interventions and people who have been suffering from eating disorders for a very long time.”

The City Hall investigation also found that many have to resort to private treatment. Two patients we spoke to said they or their relatives had to take out a new mortgage on their home to pay for private treatment.

Baroness Parminter, a House of Lords peer who has campaigned for better emergency department care since her daughter was diagnosed with anorexia, said there was still a stigma attached to the illness because it was seen by politicians and many medical professionals as a form of voluntary choice.

She said: ‘Politics is about choices and there are a lot of difficult decisions to be made, but when you compare the prevalence of eating disorders and the intensity of treatment, it’s just ridiculous.

“There has long been a discrepancy between physical and mental health care, the latter taking too long and being harder to understand.

“There is also a stigma surrounding eating disorders, they are seen as reserved for white girls who want to be thin.

“They are seen as a choice.”

She points out that while schizophrenia is a worthy cause, it only affects a fraction of people with eating disorders, but she receives more financial support because, in her opinion, the illness is not seen as a choice.

Dr Bryony Bamford, clinical psychologist and director of the London Centre for Eating Disorders and Body Image, explained: “Motivation is not enough to bring about lasting change for most people. This requires specialist treatment to help people harness the motivation that is developing and transform it into cognitive, emotional and behavioural change.”

Essentially, most people begin their recovery from fear and require long-term support to gain experiences in relationships, work and life meaning to sustain their recovery.

Photo credit: Hope Virgo