Expect full recovery (not just ‘remission’) from an eating disorder

'I expect nothing less than full recovery'

Our family therapist said she expected nothing less than full recovery. You need to know that this illness is treatable so that you can hold the candle of hope up for your child, who currently only sees a dark tunnel. My daughter only gave me one piece of advice as I wrote this book: ‘Make sure they know they will recover.’

You may have found depressing statistics on recovery: they will reflect old treatments and will not apply to you. A family-based approach is so very different and more effective (more on the effectiveness in Chapter 12).

People recover at any age, even after decades of sub-standard treatment, even with co-occurring conditions, even when nothing seemed to work for a long time. Don’t allow anyone to tell your child they will have to forever live with their eating disorder.

I have followed families where the illness was very severe and complicated, with several years of tube feeding in eating disorder units, and the young person is now recovered and thriving.

Your child is not a statistic. You will use all the tools at your disposal, and take the time it takes, to accompany them all the way to complete freedom. In the process, you will all grow closer, stronger and wiser. Sure, some things are not in our control. So we focus on the things we have the power to do. We cannot control how many apples a tree will produce, but we can provide the conditions for it to flourish.

If you need a vision of what is possible, there’s a collection of stories on the Around the Dinner Table forum under the heading 'Road to recovery: Stories of hope’. These are brief accounts from parents whose children are now well.

There are also many memoirs from adults, describing how they fully recovered well into adulthood. Bear in mind that as teens they never had access to the improved treatments we have now.

Focus on full recovery

Some kids get very discouraged to be told, 'This illness will always be with you, maybe not so loud but you'll need to live with it and manage it'. Or 'This takes seven years' (or whatever number was plucked from hearsay). These are unscientific and courage-zapping pronouncements.

There's no science to predict the course of the illness for any individual person. Even when looking at big groups, the science refutes the belief that this illness will stick around forever. There is always hope for a full recovery from anorexia or bulimia, as demonstrated in this study by Eddy et al (2017): Recovery From Anorexia Nervosa and Bulimia Nervosa at 22-Year Follow-Up. There's a layperson's summary of it on Many Women With Eating Disorders Do Recover, Study Finds.

Why are we so scared to use the word 'recovery'?

I’ve noticed many parents avoid the word ‘recovery’ and I wonder if some of the following issues need to be teased out:

• Recovery means different things for different people at different times.
• We never know what the future may bring. How many tests of fate should our child go through before we know they're relapse-proof?
• We want to show consideration for all the parents whose children still require a lot of care in spite of everyone’s best efforts. We say, ‘Nobody recovers, we’re all in the same boat,’ instead of ‘My kid recovered, yours is having ups and downs; we both did the best we could, and life has treated us differently.’
• We also want to show consideration for long-term eating-disorder sufferers who are doing a heroic job of regularly resisting urges to restrict and who regress every now and again.
• If we celebrate victories, if we say, ‘My child had an eating disorder but she’s recovered now,’ are we tempting fate? I see a lot of this among parents, and unless they’re unusually superstitious, I guess this is just a front for some of the other issues here.
• We’re hoping to protect ourselves from a big disappointment by setting our sights low. Yet in my experience, climbing heights to celebrate and enjoy the view doesn’t set us up for a fall, but allows us to be fully in the moment. And being in the moment is where we find our power, which will help us deal with bad times if and when they arise.
• We fear people will judge us if our child relapses, and we hope to protect ourselves by never sounding too confident.
• And the only issue I would pay any attention to: we fear that if we pronounce our child recovered, we will stop being vigilant, and so if our child has a setback we won’t react fast enough.

Professionals who talk of 'remission'

In studies, or among some treatment providers, the words 'remission' or 'full remission' are used instead of 'recovery'. The idea is that one can't expect recovery from an eating disorder — there's always a risk it will flare up again. Personal experiences and research contradict this depressing belief.

Check out the claims

Let's look at how terms like 'recovery' or 'remission' are used in studies, and at the claims treatment providers can make.

In some studies, ‘full remission’ means the ex-patient doesn’t fit particular diagnostic criteria for the illness any more. When you see statistics for the effectiveness of a method, check out what those criteria are. In a study, someone with anorexia could have achieved ‘full remission’ for five years while taking care to remain slightly below her healthy weight and never allowing herself an ice cream. A person with bulimia might be classed as recovered because he ‘only’ vomits once a month.

These may be very welcome markers of progress, but it’s not what we parents wish for when we talk of recovery.

A treatment provider may tell you that they have high success rates in treating eating disorders, but this means very little if they don’t define words like ‘success’ or ‘positive outcomes’. Very few keep or publish statistics. So look beyond the glossy pictures and ask lots of questions about the methods they use.

Pseudo-recovery

Sometimes, parents or therapists seem to accept the status quo, when perhaps more could be done. I’ve seen thin, pale young women talk publicly about their recovery, urging parents to take heart as there is light at the end of the tunnel. What I’m hearing and seeing is that things are still hard but they’re managing to keep the demon at bay much of the time. I’m upset when they raise money for eating-disorders organisations by running marathons, and I’m upset when they seem unaware of one glaring issue – they need to continue gaining weight. What they call ‘recovery’ seems rather fragile to me. My heart goes out to them because I imagine they are still suffering considerably.

For more on this topic

In my Bitesize audio collection there's many audios on recovery and relapse prevention. I included tips for your wellbeing once your child seems to be fully recovered.

I explain recovery statistics from studies of Family-Based Treatment (FBT) in Chapter 12 of my book

Here are some interesting timelines within FBT treatment in the practice of the ever-insightful Dr Sarah Ravin: 'Recovery Timeline for Maudsley FBT'. And some from treatment company Equip here.