Speaking out: Living with an eating disorder and the need for support

A national review has given eating disorders the attention they deserve, but action is required

Part one: Fighting for support

“I come across as very confident and would get up on the table and dance regardless, but deep down I’m not that confident in myself,” Eireann McAuley says introspectively during our conversation outside Kelvingrove Art Gallery and Museum in Glasgow. 

“To the world I am [confident]. That’s the scary thing about eating disorders, because you just don’t know. Inside I was killing myself – even right up until last week. I think until something happens to you, sometimes you don’t even realise the severity of your illness.”

The 23-year-old from Ayrshire, a fully qualified teacher in history and modern studies, works as an equality officer for the Scottish Trades Union Congress. A lover of the outdoors and football, she considers herself high functioning and the life and soul of the party when out with friends.

But beneath the surface, McAuley has battled eating disorders since her early teens – first bulimia and latterly anorexia – and as recently as two weeks ago, she collapsed in a supermarket. 

“I am still in recovery from an eating disorder right now,” she says without complacency. “I actually relapsed during lockdown.” She was first referred to Child and Adolescent Mental Health Services (CAMHS) in her senior phase of school. “At that point I was quite suicidal. I was estranged from my family, I was living in temporary accommodation, I was a young girl at school who was dealing with a lot of issues. 

“That’s probably when my eating got really bad. I began to engage in making myself sick, so I got referred to CAMHS, and then I went to university. I got really bad when I lived by myself because eating disorders thrive off isolation and for me it was the only thing I could control in my life. 

“I think that’s what a lot of people don’t understand about eating disorders, is that yes, it was partly about my looks, but it was more about how I was feeling. I couldn’t articulate my emotions. I’ve always been quite a humorous and bubbly person, so I’ve always been very resilient, very strong, but I probably had this secret that nobody’s really known about, so it was easier for me to make myself sick or take laxatives or control my weight rather than tell anybody how I was feeling. 

“I suppose that I maybe hid how I was feeling through activism for other people, but when I went to university, my eating disorder got worse. I put myself into debt to have a situation where I had a toilet to myself because the idea of sharing a toilet with five other people and not being able to make myself sick or whatever was quite stressful for me. 

“In my first year of university, I took a seizure and ended up in hospital, which was linked to my eating disorder. I was taking laxatives, I was taking diet pills, I wasn’t eating, but I suppose I just kept getting up and kept going. I’ve always been somebody that just can’t sit down, so it’s appeared to my friends that my life is together. It’s always been, ‘Eireann’s got it all together’, and although I thought I was in control, I was out of control.”

When she went to university in Stirling, the support she had been receiving stopped. “I went from children and adolescents to adult mental health and there was no transition,” she says. “When I went to uni, it was like starting all over again.” 

With the seizure, McAuley realised that she needed professional support: “I knew at that point I needed help. I tried to get help and was left on a waiting list for months and months and months and at that point, I just thought, well, I can’t be that ill. 

“I just felt quite disappointed that I knew that I needed support, but because I was at uni, because I was getting up in the morning and going to work, I was seen as not vulnerable and I suppose not ill enough, and that’s the way that the eating disorder system messes with your mind a little bit, because we’re building this culture where you’re asking people to go speak about how they’re feeling and then they do and then the provision of support isn’t there.”

That difficulty in getting help for an eating disorder, which McAuley has experienced, has been felt by others. 

It was a key finding in a report by the Mental Welfare Commission for Scotland. The paper, published last September, found: “People with those disorders and their families/carers felt there could often be a lack of support available, and delays in accessing it.”

Concerns have been raised about the focus on using body mass index (BMI) as a criterion for referral and access to services, or a measure of recovery, with less attention paid to other factors, such as co-existing mental health conditions.

Other issues were highlighted, namely inequalities in service provision, as well as confusion and conflict over the responsibility for physical health monitoring between GPs and psychiatrists. Geographical differences were also considered a problem, with support varying across the country.

We’re building this culture where you’re asking people to go speak about how they’re feeling and then they do and then the provision of support isn’t there

A national review of eating disorder services, announced by the Scottish Government in early 2020, was published in March of this year. It was tasked with giving a full picture of the current system and recommending how services and wider support mechanisms could be improved.

It outlined a vision for eating disorder services, which would see early identification of everyone with symptoms and clear signposting to the right level of intervention, a seamless treatment of mental and physical aspects of disorders, a level playing field of specialist treatment across the country, and a high level of support for the families and carers of those affected.

Fifteen recommendations will be taken forward by an implementation group, but one that stood out to McAuley, who was interviewed as part of the review, was the suggestion of a lived experience panel. This would include patients, families and loved ones, who would advise the group and work alongside the National Eating Disorders Network. 

“I do feel like we have come a long way as a country of speaking about it,” McAuley adds. “When I saw the review, I could’ve cried with happiness. I know the review hasn’t changed anything yet, but I felt like for the first time they were recognising how I was feeling. I just felt this sense of solidarity with so many people in Scotland who had similar experiences to me.

“I felt not alone in my struggle. In one way it was appalling that all of us had very similar experiences of the system, and people not understanding, but, in some way, it gave me hope that things can be different.”

McAuley, who is now receiving specialist support from a third party organised through her work, is acutely aware her battle is not over. 

“I’ve accepted that I don’t think I’ll probably ever recover,” she says. “I think an eating disorder is going to be part of my life forever, but I’m going to hopefully one day be able to snap out of unhealthy behaviours and hopefully build a better relationship with food and my body. I’m halfway there. I think it’s about other people opening up about their experiences and having that confidence to have those conversations in the workplace and colleagues feeling supported.

“I’ve been so blessed with my life. I’ve got great people around me, I’m in a very supportive workplace and that’s given me strength to speak out. I know I’m in a privileged position to do that, but not everybody has that, and I think that’s frightening. 

“Eating disorders are a deadly mental illness and I think they need to be given the attention they deserve – and support.”

Part two: A family broken

Dennis Robertson with his daughter Caroline (left) and being sworn in at parliament in 2011 (right)

Just over a decade has passed since Dennis Robertson, a former SNP MSP for Aberdeenshire West, lost his daughter Caroline, 18, to anorexia in February 2011. 

During each of his five years in the Scottish Parliament, between 2011 and 2016, Robertson led members’ debates and held cross-party conferences on the subject.

When Caroline was ill, Robetson promised that he would stand in the election. He went on to gain the seat from the Lib Dems, which was considered an upset, and dedicated the win to his daughter. 

Speaking to Holyrood about his daughter’s battle with anorexia, he said: “We didn’t notice initially that Caroline had an eating disorder, we just started to see a slight change in her behaviour. 

“She wasn’t spending as much time with us the family, she was taking herself off to her room and then we started noticing she was doing fairly excessive exercise. Her moods seemed to have changed and then we became aware she wasn’t eating particularly well.”

An appointment was made with a GP and Caroline was referred to CAMHS, where the nature of her eating disorder was established. Eventually she was hospitalised and referred to Huntercombe. After some time there, she was discharged and seen in the community, where professionals thought her condition had improved after she put on some weight. 

Caroline, who was a talented artist, then spent some time with family in New Zealand but was convinced to return home when her health deteriorated. 

Robertson continued: “It’s a tough thing to say, but we convinced her to come home because if her condition was as such that her organs were being compromised, we didn’t want her to die, we certainly didn’t want her to die in New Zealand, and when she got home – she was very thin before she went to New Zealand – she was just about a skeleton in some respects.”

She would later be taken to hospital, where a consultant gave her a 30 per cent chance of life.

“Now honestly, that hit us. We could hardly take it in. We could hardly believe what we were being told at the time,” Robertson said. 

The hospital delayed in doing a scan but eventually did, showing perforated ulcers. She was almost immediately taken to theatre, but never recovered. 

“Obviously you cling on to anything, any hope, any sense of life, but I suppose we eventually came to the conclusion that she wasn’t going to recover and then it was a question of switching off all the machines because obviously we were keeping her alive.

“That was a very difficult decision to take, to switch off that hope of any opportunity of survival. So, we came to that decision and it was an extremely difficult one.”  

What are some of the misconceptions around eating disorders?

Eating disorders are complex, potentially life-threatening illnesses and there is no single cause. They are thought to be caused by a combination of biological, psychological and sociocultural factors. 

Emma Broadhurst, the national officer for Scotland at Beat, an eating disorder charity, explained to Holyrood some of the misconceptions we often hear about the illness. 

She said: “It’s a misconception that you have to have a low body weight to have an eating disorder. Anybody with any weight can have an eating disorder, because it’s about your relationship with food and it’s about how the relationship with food becomes the symptom of something else. You can have a perfectly normal body weight but still have an eating disorder. That’s one of the first misconceptions.” 

Another common misconception is that it’s only young girls who experience them. As Broadhurst points out, eating disorders do not discriminate: “It doesn’t matter what gender you are, what background you come from, where you live, what race you are, you are just as likely to have an eating disorder as the person stood next to you.”