Living with an eating disorder: The last few months have brought unwelcome challenges

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Ciara lives with an eating disorder. She says the health service is not fit for purpose when it comes to these illnesses.

THE EFFECTS OF the Covid-19 lockdown on those with mental health issues has been well noted. However recent experience has shown the true, disturbing state of services here. Services that are badly needed to support those in need. 

As someone who has suffered from an eating disorder (ED) for years, I can attest to the detrimental effects the lockdown has had both on treatment and recovery prospects.

The clinic I was being treated at in the UK at the time was forced to close, sending patients home with a somewhat hastily arranged meal plan to attempt to persist with.

The regular biometric measurements (such as daily blood tests, ECGs) used to monitor for so-called “re-feeding syndrome” were suspended.

Specialist nurses and carers were replaced by well-intentioned, yet admittedly rudderless, family members.  It is perhaps unsurprising to say that this has not gone well. 

Mine is not a unique story but one echoed by many of my fellow patients who I have had the good fortune of meeting and relying on throughout the last few years.

Mounting pressure in lockdown

The impact of the lockdown has been acutely felt by those with an ED. Being restricted to the home presented constant reminders of the illness: the kitchen’s evolved into makeshift offices; planning what to eat for each meal became an hourly discussion point; airways were filled with lockdown baking projects.

The few excuses we did have to leave seemed exactly designed to worsen the condition: getting food at supermarkets was stressful and tiring; the exercise hour became the highlight of everyone’s day.

By way of explanation, the aim of an ED is to kill you at which it is extremely effective. Anorexia, in particular, has the highest mortality rate of any psychiatric illness.

Those with EDs often have numerous comorbidities both physical (such as fertility, cardiac issues) and further psychiatric (depression, anxiety). Eating disorders take hold furtively but eventually overwrite rational thinking and the most basic of human instincts: to eat.

It diverts physical and emotional capacity, reducing your ability to work and isolating you from friends and family. Most impressively it deceives you into believing none of this is a problem.

You never believe you are at the bottom: there’s always more weight to lose, always more miles to run, always someone else who deserves treatment more. 

For many, it acts as a comfort blanket, whether it be as a means to deal with trauma or regain control in life and as such it enslaves its sufferer. Unsurprisingly many feel hesitant to seek out help and often only at the intervention of family, friends or a GP.

It is often a small window of opportunity — too many barriers and any energy-sapped individual would become despondent and revert back to “safe” routines. 

Seeking help

Over the last few months, myself and a number of fellow patients have attempted to access care and support, here again, starting with GPs as per official HSE guidance.

In nearly all cases we were referred to incorrect services time and time again: to hospitals that no longer had applicable services, to clinics outside our catchment areas and to centres unable to accept any more patients.

One acquaintance resorted to A&E in a well-known Dublin hospital after reaching a “crisis” point. After waiting 14 hours she was eventually told by the duty psychiatrist that there was “nothing they could do for her at this point” and that “it didn’t look like she had an eating disorder”. This “assessment” was made without even calculating her BMI.

She was discharged with a recommendation to seek a referral to one of the clinics and a sheet on practising mindfulness.

She chose this hospital, not for convenience but because it has one of the country’s dedicated eating disorder units akin to our cancer “centres of excellence”. It is therefore even more astonishing that an associated psychiatrist would not see the harm in this language.

It effectively incentivises one to get worse – go away, lose more weight and then we will treat you. As a country, we wouldn’t accept stage 1 cancer patients being turned away and told to come back at stage 2 or 3.

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Early effective intervention is essential for preventing EDs becoming chronic and treatment-refractory. I know this, the HSE knows this — their official policy documents note “early intervention, evidence-based care, and consistent support make a profound difference to the clinical and personal recovery of people”.

This HSE Eating Disorder Services Model of Care document is admirable but despite having been approved in December 2017 has yet to be implemented. 

Anecdotal evidence suggests these issues in the mental health system are not exclusive to eating disorders. In preparing for another surge in COVID we need not lose the fight in another crisis here. ED sufferers, for one, will persist with their very private hunger strike.

Ciara lives in Dublin and has been living with an eating disorder for over 10 years.

  • SILENT TREATMENT – Our colleagues at Noteworthy want to find out if people with eating disorders are being failed by the public health system. Support this project here.

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