People with eating disorders have faced a hellish time during the pandemic, socially isolated and facing reduced services, just when changes in routine have put them at their most vulnerable. The heartbreaking death of former Big Brother contestant Nikki Grahame at the age of 38 has only brought to the fore how many others have been silently suffering.
Grahame had struggled with anorexia nervosa since childhood. Just a week before her death, her mum Sue Grahame spoke of how lockdown restrictions had impacted her daughter’s mental health – from the social isolation to the closure of gyms.
“Last year really put the cap on it,” she told This Morning. “The isolation... it’s been really hard for her. Really hard. She felt very cut off and spending too much time on her own with not enough to think about other than food and that took a grip as well.”
In March, when her illness had worsened, Grahame checked into a private hospital after a group of friends crowdfunded money to pay for her care.
Tragically, she passed away on April 9.
There are an estimated 1.6m people in the UK suffering from an eating disorder – however this figure is likely to be higher, as some may not seek help. While the pandemic has been stressful for many people with poor mental health, those with eating disorders have faced a range of triggering factors, including gym closures, food shortages and a massive disruption to everyday routines.
A spokesperson for eating disorders charity Beat confirmed to HuffPost UK that they’ve seen a 302% rise in demand for helpline services since the first lockdown in March 2020.
Beat’s director of external affairs, Tom Quinn, says: “We know the pandemic has been particularly difficult for people affected by eating disorders ... It is not surprising, as those affected and their families have had to cope with extreme changes to their daily routines, support networks and care plans, all while also dealing with the additional stress the pandemic has brought.
“It is now more essential than ever that anyone struggling gets the help they need without delay. We would urge anyone worried about their health to contact their GP at the earliest opportunity.”
But help isn’t always available, as Jemma Meeson, founder and clinical director of mental health practice The Family Treatment Service, points out.
“Public sector eating disorder services are so overburdened and underfunded,” she says. “They have seen increases in referrals of up to 75% and it is just not possible to give people the care they deserve, or that the clinicians would like to deliver.”
Eating disorders have the highest mortality rates among psychiatric disorders, and anorexia nervosa has the highest mortality rate of any psychiatric disorder in adolescence – partly explained by the severe physical complications arising from the issue, but also the rate of suicide.
It is a difficult illness to treat as young people and adults may not reach out until they are very unwell. Meeson notes they then have to wait a long time for proper help, or receive a minimal amount of treatment, which results in the illness becoming more serious and recovery more difficult.
“We all know that early intervention results in the best possible recovery outcome,” she says. “Not providing children and young people with the resources to recover means that their illness may not be cured and that they go into adulthood with enduring anorexia nervosa.”
While the UK Addiction Treatment (UKAT) Group, a private clinic, has noticed a drop in admissions for eating disorders during the pandemic, it attributes this in part to the ‘stay at home’ messaging, rather than a drop in cases. In 2019, the clinic received 121 admissions, which more than halved in 2020 to 56. It’s a pattern that continues: in 2021 so far, it has had just nine admissions.
Admissions numbers could also reflect a lack of means to pay for private care during what has been a very difficult period financially for a lot of families.
Nikki Grahame’s friends were able to raise almost £69,000 for private treatment after she’d “exhausted every avenue possible” on the NHS. But not everyone is able to stump up such huge amounts in such short timeframes.
“It was so deeply saddening to hear of Nikki Grahame’s passing,” says Dimitra Theofili, eating disorder specialist at the clinic.
“We already know that the NHS is backlogged with children and young adults requiring treatment for eating disorders; a backlog that has been created because of the Covid crisis. But this is an illness that worsens over time, and if a person asks for help, they must be given it immediately and continuously.”
For those who had a tumultuous relationship with food prior to the pandemic, the past year “could have hit them very hard and worsened their disorder”, Theofili explains. This is because routine is key to being in control of an eating disorder – and multiple lockdowns, no food on the shelves during the height of the crisis, gyms being closed, and face to face support networks being stopped will all have been incredibly difficult hurdles to face.
“Unfortunately, for many, an eating disorder is for life,” says Theofili. “Treatment provides the person with the tools they need to manage their disorder every day. The pandemic threw normality out of the window and forced people into a life of restriction and isolation; scenarios that an eating disorder thrive on.”
In a study into the impact of the pandemic on eating disorders, 83.1% or participants reported a worsening of symptoms. The findings indicated that difficult emotions (such as fear and uncertainty), changes to routine, and unhelpful social messages were all triggers. While some participants described employing positive coping strategies (such as limiting their time on social media), many reported disordered eating and alcohol became their go-tos.
Food shortages during the first lockdown will not have helped matters, says the specialist. “Society was possessed with a need to stock up on food, and for someone in recovery from bulimia or binge eating disorders, this time of uncertainty, fear and vulnerability could have meant they went against what is encouraged in treatment to avoid stockpiling.”
Some people have further restricted what they have eaten to compensate for not being able to exercise enough, Theofili notes, while those who binge-eat tend to do so to control feelings of depression and anxiety – “emotions that ran sky-high throughout the last year”.
As she sees it, “2020 was a year where people didn’t understand or appreciate that other illnesses ran in parallel with the coronavirus pandemic. Illnesses like cancer, dementia and eating disorders cannot be paused, they are progressive illnesses that worsen over time if left untreated and unsupported.”
Meanwhile, mental health services are ever more stretched. In January 2021, the head of the Royal College of Psychiatrists warned that NHS mental health beds were so full that patients were going without treatment or having to be sent outside of their local area for help. In February, psychiatrists reported a “tsunami” of eating disorder patients in England.
Dr Agnes Ayton, chair of the Eating Disorder Faculty at the Royal College of Psychiatrists, said conditions such as anorexia had been thriving in lockdown and added that in Oxford, where she works, around 20% of people admitted were usually urgent referrals, but this had risen to 80%.
The issue has been compounded by a lack of beds, which were already in short supply – infection control issues, like the need to socially distance, have limited them even more. This has pushed up waiting times and is further delaying treatment for those who desperately need it.
“During the pandemic, we cannot run to the same level of capacity in hospitals but this means our list of people waiting for a bed has grown,” Dr Ayton told PA News in March. “The number of people referred for admission with severe eating disorders is a small proportion… but you’re talking about people who are at really high risk of dying or at potential risk of dying.”
Despite these serious challenges to services, anyone who is struggling with disordered eating during lockdown is urged to reach out as soon as possible – whether to friends and family or to health professionals.
“Everyone should be entitled to the help they need, for free, locally to them,” says Meeson, from The Family Treatment Service.“If you are finding this difficult to access then the Beat website has great information on overturning a bad decision by your GP if they decide not to refer you to specialist services.”
She adds: “Let’s hope that this awful loss of life to an illness that can be treated isn’t in vain and that at least public awareness is raised, both of the dangerousness of anorexia, and of the importance of getting help.
How to help someone with an eating disorder
It can be hard to know where to begin when supporting someone with an eating disorder.
Dr Christian Buckland, psychotherapist and spokesperson at the UK Council for Psychotherapy (UKCP), offers some tips on how to start that conversation, because listening and being there for them is the most helpful thing you can do.
1. Don’t put off talking to them about your concerns. Research shows that early intervention is key to a safer recovery. Eating disorders are not a phase that people grow out of, but a sign of emotional distress, so it is important that you open up a discussion.
2. Encourage them to discuss their feelings in general, not just food. Talk to them about your concerns in a calm, safe space. Encourage them to talk about their feelings in general. Don’t focus solely on their relationship with food. Telling them to eat better or healthier is probably going to close down the conversation, so listening is the most helpful thing you can do.
3. Don’t take rejection personally. Don’t feel angry or rejected if they don’t want to talk. No matter how well you know them, they may not feel comfortable or ready to open up. Keep in mind, an eating disorder is usually a sign of deep underlying emotional distress. Often those struggling with an eating disorder are not ready to change and will disagree with your concerns, and that’s okay. Just be patient with them.
4. Encourage them to seek help from a trained professional. Suggest they meet with a trained professional. This is often easier than talking to friends or family. If they are open to the idea, help them to find an accredited psychotherapist. There are often physical complications associated with an eating disorder, often requiring medical interventions. Therefore, it is important to find a professional who has the experience of working with eating disorders. You can also encourage them to attend an appointment with their GP.
Useful websites and helplines:
- Beat, Adult Helpline: 0808 801 0677 and Youthline: 0808 801 0711 or email help@beateatingdisorders.org.uk (adults) fyp@beateatingdisorders.org.uk (youth support)
Samaritans, open 24 hours a day, on 116 123
Mind, open Monday to Friday, 9am-6pm on 0300 123 3393 - UKAT, for 24/7 confidential information and support on eating disorders, and to request a free callback, visit the UKAT website.