Feature
What does an eating disorder look like? Part 2
According to an advocate with lived experience, asking for help can be one of the largest obstacles to overcome on the road to recovery.
‘Compassion is the antidote to eating disorders’: Melissa Keller-Tuberg’s GP understood and monitored both the physical and mental health aspects of her eating disorder.
Every ‘groundbreaking moment’ in Melissa Keller-Tuberg’s recovery from an eating disorder occurred when her GP showed compassion, particularly when it was least expected.
But it took some time to reach that point.
In her teens, Melissa was admitted to the Canberra Hospital after many failed attempts at accessing appropriate support for an eating disorder.
‘I always say that my experience started with a thought that unravelled fairly quickly over the course of about a year and ended up with hospitalisation and many years in and out of treatment,’ Melissa told newsGP.
The thought itself was, ‘I’m not happy with who I am. I don’t like the body that I’m living in, and I wish there was a way to change that’.
Within the first few months of Melissa experiencing those thoughts, together with her family she did all the right things to seek care. But while later on her interactions with GPs were ‘wonderful’, on that first occasion she felt discouraged and that she ‘was not sick enough’.
‘I discussed with the GP how I was feeling – that I was losing my appetite and crying all the time,’ she said.
‘I was told that it was normal for teenage girls to be feeling that way and was prescribed medication for stomach ulcers, thinking that my appetite was changing as a result of something physical.
‘After that it felt as if a button had turned on in my head and what was previously poor body image, disordered eating, really rapidly deteriorated into a very significant eating disorder.
‘And I can say for sure, that feeling that I needed to prove that I deserved help or that I was sick enough was a significant trigger at that point.’
The nature of anorexia and how hard it is to recover resulted in periods of hospitalisation, including times when Melissa was unsure that she would ever get better.
Eventually, her parents took a year off work to become her full-time carers and over the next few months Melissa and her family turned to the community to seek advice around where to find a GP who would be able to support them through that experience.
It was during this time that Melissa encountered some ‘really skilled GPs’ that ended up being the centrepiece of her multidisciplinary team.
‘The unique skillset of GPs cannot be understated,’ she said.
‘My GP understood and monitored both the physical and mental health aspects in an integrated and holistic way, and I really appreciated how I didn’t have to repeat details with her.
‘I actually stopped seeing other clinicians because she was the most helpful.’
Seeking help and the GP’s role
Eating disorders have one of the highest mortality rates of any mental illness and are on the rise, with an increasing demand for support services.
This growing issue was recognised in the 2023–24 Federal Budget, where $2.8 million in funding was allocated to support people with eating disorders and their carers.
The National Eating Disorders Strategy 2023–33 was also released on 30 August, setting the minimum standards required and actions needed to achieve an effective and coordinated system of care that meets the needs of people living with or at risk of eating disorders.
Part of the Strategy involves greater education for GPs in this space, given the minimum standard of evidence-based care is often not being utilised.
A lived experience participant is quoted in the Strategy as saying ‘it was hard to find a GP with expertise in this area … When we found one they were brilliant, but there is not enough of them’.
Dr Karen Spielman is one of those GPs with a special interest in eating disorders. She told newsGP that within the system of care outlined in the Strategy, GPs are well placed.
‘[Care] is core to our daily practice – we are adaptive and responsive so can work at every level of the system depending on our level of interest and expertise,’ she said.
‘As carers of both mind and body we are perfectly placed to assess and support people across the whole spectrum of disordered eating and eating disorders from prevention, health promotion and early detection, right through to relapse prevention and long-term care of those with complex comorbidities or severe enduring illnesses.
‘We know our patients, their families and their context, and … can connect them with resources and local care services where appropriate.’
Taking patient concerns around eating disorders seriously, regardless of whether they fit the diagnostic criteria, is a powerful way GPs can help.
After years of going in and out of GPs rooms until she found the right one, Melissa knows first-hand how difficult it can be to get over the first hurdle.
‘One of the hardest things to do is to ask for help, and one of the stickiest barriers to help-seeking and recovery is the belief that you’re not “sick enough” or “thin enough” or “look like you have an eating disorder”,’ she said.
‘It is highly distressing and triggering to be weighed and assessed for an eating disorder, when [it is] likely screaming in your ear, before being affirmed that your distress is valid.
‘Even if someone doesn’t meet diagnostic criteria, their distress is serious. Getting help early, particularly prior to changes in weight and shape, shouldn’t be a reason to get no help at all; it is an opportunity for early or very early intervention with appropriate supports.’
Dr Spielman agrees it is important to recognise if someone presents seeking help for an eating disorder that they may have already overcome many barriers to see their GP.
‘We need to honour that with recognition of their courage and determination,’ she said.
‘Eating disorders thrive on secrecy and minimisation so a response that insinuates someone is not sick enough for care may very well deter them from seeking help in the future and contribute to a more prolonged and entrenched illness.
‘Eating disorders can be extremely serious illnesses and early recognition and treatment improves outcomes and can be lifesaving.’
Melissa says the most powerful help GPs can initially provide is to take the person seriously, regardless of whether they fit the diagnostic criteria or are living in a larger body or smaller body.
‘It starts with a thought and the whole experience is a mental health experience … [addressing] that part is important before putting somebody on a scale,’ she said.
‘Approach the person in the same way that you might approach other mental health experiences or diagnoses as the first point, because that’s what makes it feel as if you have to prove that you’re sick enough to deserve help.
‘You can tell somebody, “I’m so glad that you came to the GP today, we’re going to do what we can to support you on the journey to feeling better”. Then navigate the complexities of meeting criteria or accessing particular Medicare plans.’
Dr Spielman heeds that advice.
‘Meeting your patient with respect and curiosity and compassion will be validating and helpful,’ she said.
‘Eating disorders affect people of all shapes and sizes and carry very serious morbidity and mortality – you cannot tell from looking at someone how unwell they may be.
‘Asking simply, “How is your relationship with food?” can be a wonderful conversation starter and give your patient confidence to further discuss their concerns with you, then allow you to proceed with a thorough assessment.’
Alongside other lived experience advocates, Melissa is calling for greater awareness of eating disorders being complex mental health experiences that are not just a ‘one-size-fits-all’ condition.
Compassion is the antidote to eating disorders
People with eating disorders starve and/or soothe themselves with food instead of compassion, according to Melissa.
During the last five years of a ‘very intense’ stage of treatment, the moments she remembers most clearly are the ones with her GP.
‘Without exception, every groundbreaking moment in my recovery occurred when my GP showed compassion, particularly when I least expected it,’ she said.
‘There was the hell of being weighed and keeping me out of hospital, but those moments when my GP looked me in the eye and said, “You will not feel like this forever, and I know that’s hard to believe, but I believe it”, I will remember forever.
‘And it might just feel like words, but that’s what actually made a really big difference.’
For Dr Spielman, who has heard patient horror stories about health professionals who are dismissive and say, ‘you just have to eat’, she understands that aspect of care.
‘Our patients need to feel safe with us in order to access our care,’ she said.
‘No one chooses to have an eating disorder. But they do serve a function and may also be painful to give up. An understanding of that and provision of compassionate care is something that GPs can offer.’
Now, as a lived experience advocate, Melissa has spoken to hundreds of people of many ages, genders, diagnoses and experiences.
‘The one thing I hear from everyone is a call for more compassion,’ she said.
‘At their core, all mental illnesses are profound expressions of human suffering. For treatment to work, it must respond to the humanness of it all, not just as a problem to be fixed or a body to lose or gain weight.’
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