“Eating disorders have the highest mortality rate of any mental illness.” I hear those words in St Frances Clinic at Temple Street Children’s Hospital in Dublin.
My 11-year-old daughter is lying in a hospital bed struggling to eat one of seven meals the nurses will give her that day, while I try to get my head around how we ended up here. I ring my husband and relay everything I’ve learned in the past 24 hours – our daughter is dangerously underweight and we have a lot of work ahead of us to help her get well.
We are one of countless families across Ireland supporting a loved one with an eating disorder, and it now seems 2020 saw the problem grow. According to Harriet Parsons, training and development manager with Bodywhys, the Eating Disorders Association of Ireland, there has been a marked increase in people seeking their services, particularly the online support group, which has seen a 110 per cent increase in users, while its PiLaR (Peer Led Resilience) programme for families and supporters, has seen a 98 per cent increase in attendance since the groups moved online.
Eating disorders thrive in isolation. There's the loss of structure as well as heightened stress; all of that would contribute to risk factors in those who are vulnerable
So has the pandemic had a direct impact on people affected? “I’ve heard every situation,” says Parsons. “I’ve heard of people, where everyone is suddenly together and routines are out the window, realising, ‘this person is not okay; there’s something going on’. And because of the anxiety around the pandemic or change, their disordered eating has gotten out of control. In other situations, lockdown conditions were the straw that broke the camel’s back – food and exercise became an issue. People are presenting in a far worse physical state than before Covid-19. It feels like every referral is urgent; people are presenting far sicker.”
Dr Michelle Clifford is a child and adolescent psychiatrist and the national clinical lead for eating disorders with the Health Service Executive (HSE): "We're seeing increasing numbers and severity of all types of eating disorders, including anorexia, bulimia and binge eating disorder; and it's across all ages – not just young people, but also younger children and adults. We have three specialist community eating disorder teams in the country, and all three are seeing an increase in referrals.
The Child and Adolescent Mental Health Services (CAMHS) and adult mental health services are also seeing an increase. Paediatric hospitals are reporting a real increase in admissions for really medically unwell children. There's an increase in adults presenting to hospitals as well, and our colleagues in Australia, the UK and America are reporting the same. We saw a peak in July, when restrictions first lifted, and an even bigger peak in October/November."
Dr Clifford explains there have also been cases where those who have recovered have relapsed in lockdown. “Eating disorders thrive in isolation. There’s the loss of structure as well as heightened stress; all of that would contribute to risk factors in those who are vulnerable.”
Dr Malie Coyne, a Galway-based clinical psychologist and author of Love In, Love Out (HarperCollins Ireland) has also seen an increase in referrals: "Covid has affected all of us in so many ways. Those who have an underlying anxiety have been hit most hard. In the first lockdown, we were all encouraged to practise healthy eating and exercise, and for a young person with underlying anxiety, that's when eating distress came out to play; and it was taken to extremes as a way to cope, because an eating disorder is a coping mechanism."
In our own case, while my daughter’s anorexia probably began well before Covid reached Ireland, lockdown definitely brought it to the surface. In those early weeks, when schools first closed, she was eating some of the treats I baked. By mid-April, she was saving them for weekends, and by early May she politely declined, refusing outright even the healthiest of sweets by June.
She insisted on accompanying me for daily walks, and while she was eating three square meals, snacks were completely gone from her diet. Her energy levels were deteriorating. She looked pale. I knew something was wrong, yet I couldn’t see just how much weight she’d lost as she hid her body underneath baggy clothing and behind locked doors. That’s the thing about an eating disorder – the person affected gets really good at hiding it. It’s their safety net and they’ll hold on to it, making sure no one takes it away.
Dr Coyne herself struggled with anorexia when she was 14: "It was a deep unhappiness, eating is just a part of it; losing weight and over exercising, that's what you see, but what's underlying is so much deeper. Anorexia happens to somebody who's more 'perfectionistic' to start with, who is in the 15 per cent of children with an anxious disposition. Food is just the way it's expressed; it's something you can control."
Know the signs to look for; how an eating disorder affects a person's behaviours, their thoughts, how it affects them both physically and emotionall
“I couldn’t sit still, for me, sitting meant not exercising,” Coyne explains. “I was hardly eating a thing. It would take me an hour to eat the corner of a piece of bread. My fingers were white, my lips were blue. Everything was hanging off me. It was like living under military occupation and the dictator was my mind. I think people don’t realise that when you’re starving yourself, your thought processes are no longer that of a rational human being. I was really unhappy and for me, this was my way of feeling control. I have a tendency towards OCD [Obsessive-Compulsive Disorder] and anxiety – I still struggle with it, it doesn’t go away, but thankfully, the eating disorder did.”
So what should you do if you’re concerned about someone? Parsons advises to proceed with care: “Think through why you’ve got alarm bells ringing in your head. What’s worrying you? Is it the eating behaviours, how the person is physically, their mood? Are they stressed or upset? You want to be clear in your head as to exactly what you’re worried about because you need to be as confident in your reason for that conversation as possible because the person’s natural reaction will be to get defensive and minimise what you’re talking about. The food behaviours are a way the person uses to help them feel better with other things, so if you only focus on food, you’re kind of missing the point.”
Dr Coyne agrees: “Educate yourself before you approach them. Know the signs to look for; how an eating disorder affects a person’s behaviours, their thoughts, how it affects them both physically and emotionally. And tread carefully, as you’re bringing awareness to the person’s secret coping mechanism. Use ‘I’ statements and don’t just focus on what they’re doing, but how they’re feeling. So try, ‘I’ve noticed you seem less happy’. This is the first of many conversations – it’s not the ‘reveal’ conversation that’s going to disarm them.”
Parsons offers a few more tips on the language to use: “When you make that first approach, say, ‘I need to talk to you because I’m worried’. Be very concrete about why you’re concerned: ‘I’m aware you’re restricting your food.’ You don’t need the person to confirm you’re right, because they might not be able to in their head. You also don’t want that to be the only thing you talk about. So say, ‘What I’m really worried about is, are you okay?’ ”
The pandemic has really highlighted how much we need services in the community to be put in place
“Often, parents get caught up in that first conversation, trying to achieve too much and not understanding the counterintuitive nature of an eating disorder. With an eating disorder, it’s like, ‘I don’t want anyone to come near what I’m doing. This is the thing that makes me feel secure’. That’s why it’s so important to talk it through on the [Bodywhys] helpline or PiLaR or write an email and spend time thinking about how you can start this off on the right foot,” advises Parsons.
Once you’ve had that conversation, and know in your heart there’s something very wrong, your first port of call should be your GP. Explain beforehand the detailed reasons for your visit so the GP is aware it may be a sensitive appointment and can allow enough time.
“Trust your instincts,” says Dr Clifford. “If you’re noticing changes in eating patterns, children becoming more upset around mealtime, more withdrawn, go to your GP, and don’t be afraid to approach your loved one. The Eating Disorder Self Care app (see below) offers information about how to approach somebody, as well as information for anyone who’s concerned that they themselves may be developing an eating disorder; 85 per cent of people with eating disorders say they find it difficult to access help.”
There are a number of myths around eating disorders that need to be cleared up. First, an eating disorder is a serious mental health issue. Body image is a factor, but it goes way deeper than that. “It has the highest mortality rate of all psychiatric disorders. It’s a mistake to think of it as just food and weight,” warns Dr Coyne. “It’s actually about the person’s sense of themselves, their self-worth.”
Second, eating disorders are not the preserve of females. According to Dr Clifford, “about 25 per cent of cases are attributed to men and boys and, traditionally, it’s under-recognised, under-treated, and poorly researched. It occurs across all genders, sexualities, and ethnicities”.
Eating disorders are far more common than most people realise. According to the HSE’s Model of Care for Eating Disorders (January 2018), an estimated 188,895 people in Ireland will experience an eating disorder at some point in their lives, while approximately 1,757 new cases occur in Ireland each year. And with the increase in cases in 2020, that figure is likely higher now. Dr Clifford also points out that they occur right across the weight spectrum, so it’s not just those who are underweight.
Lastly, Parsons notes one particular myth: “That this is something the person might live with their whole life. That’s not true; it is absolutely possible to recover from an eating disorder and people do make a full recovery, where food and eating is not the thing they turn to when they’re stressed.”
Dr Coyne is living proof that people can make a full recovery. “I’ve met people who’ve struggled on and off all their life. With me, there was an early detection, and it was almost like there was a flick of a switch in my mind and I realised, ‘What am I doing to myself here?’. Now, when I’m stressed, I don’t restrict food or over-exercise.”
Evidence shows that early detection and effective, evidence-based treatment is essential in giving someone the best chance at recovery. Unfortunately, depending on where you live, access to certain services can vary, but the plan for the HSE’s National Clinical Programme for Eating Disorders is to expand services across the country.
“We know what we need to do and have the plan, it just needs to be implemented,” says Dr Clifford. “The pandemic has really highlighted how much we need services in the community to be put in place. It’s about delivering those [community eating disorder] teams in a sustainable way so that everybody, no matter where they live, or what age they are, has access to the right treatment at the right time, in the right place. It’s about prioritising the funding so we can deliver those teams.”
“Funding for that model of care will mean teams are resourced properly, that they have the right personnel to ensure really early intervention and really quick and evidence-based treatment with experienced clinicians,” adds Parsons. “It’ll get people in quicker and back to their lives quicker. We also need to increase the knowledge with GPs around referral pathways.”
Support at home is also essential. “That’s why we [at Bodywhys] have PiLaR because for families to be able to support [their loved one], they need to be supported,” says Parsons. “Some have said that after their family member did PiLaR, they started supporting them in a completely different way and it made all the difference.”
It’s important to note that recovery is a slow process. The first stage is getting the person physically well. Then, a long road lies ahead. “Be patient,” advises Coyne. “It can often be a case of one step forward, two steps back. For me, my worst nightmare was to be told I needed to eat. My mindset had to change. Be prepared for a long road and have patience. You can’t go from eating nothing to suddenly eating normally.”
In her book, Dr Coyne writes about “turning the volume down on the critical voice and turning the volume up on the kinder voice. The kinder voice is the one you use with your best friend when they’re in trouble. That critical voice will continue in the head of the person with an eating disorder, but it’s just about saying, ‘Okay, you’re there’.”
One of the most helpful things our family was told was to separate the child from the eating disorder. In our case, we chose to give it a name: Julia. So when it’s clear it’s not our daughter doing the talking, but the eating disorder, we simply say, “Julia is not allowed at the dinner table” or “I’m not interested in speaking to Julia, so when you’re ready, I’ll talk with you”.
Increased awareness is so important. You’re never really sure what someone is going through in their own head, so we all need to be mindful about the language we use, and the messaging we project around weight, food, dieting, fitness, especially at this time of year, when resolutions and encouragement to change behaviours are so pervasive.
“The two main risk factors for developing an eating disorder are dieting and body dissatisfaction; it’s not that these messages cause eating disorders, but they can contribute and be a trigger for people who are vulnerable,” says Dr Clifford. “It’s also very difficult for people who are recovering to hear all these unhelpful messages about weight and body shape.”
Dr Coyne has further advice to parents: “Promoting a positive body image in your child, being a role model by accepting your own body, maintaining a positive attitude towards food and exercise, and encouraging them to think critically about what they see online are really important.”
The clinical psychologist has one last thing she’d like to say to parents of a child affected by an eating disorder: “It is not your fault that your child has an eating disorder. And it’s not your child’s fault. It’s just a series of unfortunate factors that put him or her in a particular situation. As a parent, it’s natural to look back and go, ‘I should have done this’ but shame and blame are not going to make things better. It’s important for us to put our hands on our hearts and say, ‘It’s unfortunate and sad that it happened, but now we can move on from here.’”
The author of this article has chosen to remain anonymous for the purposes of maintaining her daughter’s privacy.
*Sharon's son was 11 when he was diagnosed with anorexia
"I noticed my son was exercising more and looking at ingredients [of food]. He plays football, and I approached someone at the club who said he'd have a chat with him. He said my son was talking about calories and wanting to get fit. That was just before we went on a holiday. It was the worst two weeks of our lives. Every meal was an issue. He was cold, he didn't make friends. I couldn't wait to get home. My son had a tournament, and we told him he could only go if he ate. He got upset and said we didn't understand how hard it was for him, that he didn't want to live. I rang the GP. She took us seriously. I was expecting her to tell me he was on the cusp of an eating disorder, but he was entrenched. We went to A&E for an assessment and they put forward the option of the Linn Dara [specialist HSE] outpatient service.
“The eating disorder took over our whole family. It’s a cruel disease. There are tears and anger. One of the biggest lessons I learned was to say, “I love you, but I don’t love what the eating disorder is doing right now.”
“My advice to concerned parents is to listen to your gut. Go to the GP armed with information and don’t be fobbed off. And to everyone else, be conscious about the language you use around kids. To people going through this, there is hope. You can beat this. Get support; my neighbour was the one person I could trust who knew what to do in a situation.
“I’ll always keep an eye on my son, but he is now 14 and doing really well. People can recover if they get the right treatment early.”
*Name has been changed.
Where to go for support
If you are concerned about a loved one or worried you may be developing an eating disorder, check out the following resources:
- The National Clinical Programme for Eating Disorders (NCPED) Self Care app offers information and advice for anyone worried about developing an eating disorder. The NCPED is a collaborative initiative between the HSE, the College of Psychiatrists of Ireland and Bodywhys. ncped.selfcareapp.mobi
- The Bodywhys website offers a wealth of information, while the organisation provides a range of support services, including the PiLaR programme for families and supporters, a helpline (01-2107906), email support (firstname.lastname@example.org) and age-appropriate support groups for people with eating disorders. bodywhys.ie
These resources are not a replacement for medical advice. To learn how to access healthcare support, contact your GP