We need to start treating anorexia as a chronic disease

I suffered from anorexia when I was a teenager. It wasn’t severe enough for me to be hospitalised, but it was bad enough that I began fainting in school and stopped having my period for a year.

Today, I am a healthy weight, yet I still feel the consequences of that eating disorder. I hate my body; I obsess about thinness; I periodically starve myself. When I see pictures of skinny women, even if they look unhealthy, I am envious.

There is a stereotype that eating disorders are a teenage illness that you grow out of, but this is not true. According to a 2019 study in the International Journal of Eating Disorders, just one in five patients will make a full recovery.¹

For many of us, having a healthy relationship with food and our bodies is a lifelong struggle. And it’s essential that we talk about anorexia as a chronic illness, so that people like me get the ongoing support and care that we need.

Treatment with a long-term view

It took a decade of treatment and several relapses before any health professional warned Eleanor Loseby that her anorexia could be chronic. She’s had the condition since age nine.

“I wasn’t spoken to about the risk of relapse. The medical professionals just hoped it wouldn’t happen,” she says.

Each time she fell back into her old patterns, she experienced “a huge amount of distress,” and struggled with treatment that was focused on getting her to gain weight above all else. “While this kept me alive, my mental health still suffered,” she says.

When patients aren’t properly informed about the risks of relapsing, they could blame themselves when it happens

While weight restoration is an important part of physical anorexia recovery, psychological recovery is essential too. Yet our current system does not have enough resources to treat the underlying issues and prevent long-term consequences of anorexia, explains Deborah Creed, a psychotherapist who has treated many young people with eating disorders on the NHS. This can leave patients ill-prepared to deal with relapses and other lingering effects of the condition.

Sometimes, Creed explains, clinicians can feel that it’s in their patients’ best interests not to speak with them about the long-term risks of their eating disorder. “We don’t always tell patients about the possibility of relapse because we want them to have hope, to believe that they will, one day, be carefree,” she says.

The cost of denial

But when patients aren’t properly informed about the risks of relapsing, they could blame themselves when it happens. In the case of children or teenagers, it may be their parents who feel that they have failed.

“It’s an entirely unnecessary sense of failure. This is a relapsing disease,” explains Dr Julia O’Toole, a paediatrician who founded Portland’s first eating disorder clinic for children in 1998. Recognising the relapsing nature of the illness would destigmatise the journey, she says.

We need to talk about eating disorders as chronic illnesses so that patients know what they are up against

It would also allow patients to prepare and develop the tools they need to recognise the signs of relapse. Patients could “make a plan to help prevent or manage relapse, bearing in mind the coping strategies [they] have developed,” explains Katharina Dixon-Ward, Clinical Advice Coordinator at Beat, the UK’s leading eating disorder charity. Strategies include identifying challenging situations and warning signs and creating a support team to reach out to in times of need.

Loseby eventually took matters into her own hands to avoid another relapse. She combined the exercises and tools that she had found the most useful and created an illustrated workbook to help people with eating disorders identify their intrusive thoughts and triggers.

“As soon as I began to understand my thought patterns, I could work out how to change them, which has prevented me from relapsing since,” she says. Her workbook has been distributed to patients in eating disorder wards and clinics.

We need to talk about eating disorders as chronic illnesses so that patients know what they are up against. Full recovery is possible: many patients go on to live full and happy lives. But this is far easier when they have the tools and support they need to tackle anorexia as a relapsing disease.
 
 
Featured image is an illustration of three weight scales, with the word “RECOVERY” in place of numbers. The scales sit against a pattern of wavy, soft blue shapes
 
 
Page last updated December 2021