by Christine Naismith, Eating Disorders Families Australia
I am the Mother of two girls and a son in Melbourne, Australia. My elder daughter, 24, has recovered from Anorexia Nervosa and my younger daughter, now 17, has ARFID (Avoidant Restrictive Food Intake Disorder).
I am one of the co-founders of a National volunteer charity, Eating Disorders Families Australia, which started in 2017, to help support and connect parents and carers of people with eating disorders, after personally experiencing the isolation, fear and exhaustion of caring for my daughter when she had Anorexia Nervosa and being thrown into the chaos of implementing FBT with a child who would rather die than eat food.
The current uncertainty and panic around the fast and widespread COVID-19 virus is creating global anxiety. Unfortunately, this only further exacerbates the fear and panic amongst many people with eating disorders and the people who are caring for them, with respect to:
- the availability of necessary food and supplies
- the need for particular foods and brands to follow prescribed meal plans or which are ‘acceptable’ to this group who are maybe rigid thinkers, have OCD, ARFID, or are afraid of change or calorie differences, etc
- social anxiety and fear of crowds – social phobia heightened by the frenzy of crowds in supermarkets
- having supermarkets put quantity limits of one or two on particular items can be problematic when trying to renourish, which requires megacalories per serve (cream, oil, etc)
- seeing people stockpiling and loading up trolleys can add further to their anxiety or panic in general and can be detrimental to those experiencing Binge Eating Disorders or Binge-Purge Eating Disorders
- germ phobia with some is obviously exacerbated with the crowds and the lack of availability of hand sanitisers and masks
- the carer burden of guilt is heightened if the treatment requirements of renourishing and weight gain cannot be sourced to follow meal plans or frequency of feeding
- the anxiety of not being able to access the food required may simply be reduced by our loved ones selecting to not eat and go backwards in their mental and physical health, in turn then adding to the already overstretched medical systems dealing with the Pandemic
- people with eating disorders may already be in an immunocompromised state or at risk of more problematic consequences of the COVID-19 virus, putting them in a higher risk category than the average person and their families also will be anxious about the increased environmental threat to their health
- how to manage preparing meals and snacks when ‘accepted’ foods are unavailable or insufficient calorie dense foods are available
- how to maintain medical supervision and appointments with clinicians when many clinics are shutting down or stopping face-to-face consultations; weighing, heart rate, blood pressure checks for postural hypotension, blood sugar checks, potassium and electrolyte checks still need to be monitored regularly and telehealth may not offer solutions to all of these scenarios
- universities and schools closing – how do concerned carers monitor those living away from home, how do working parents supervise younger children if not at school, how do families cope if jobs collapse and money is not readily available?
- financial concerns are obviously going to play a big factor in the coming weeks and months as more jobs are lost, businesses shut down, travel is banned, etc Mental health as well as physical health may take a serious hit.
What can we do as carers of people with eating disorders to reduce some of this heightened anxiety?
- Try not to feed into the panic frenzy; be calm around your loved one with the eating disorder to instil some confidence that things will be ok.
- Try to have access to clinical support via online or phone channels.
- Utilise the collective knowledge and experience of peer forums such as F.E.A.S.T. & International Eating Disorders Family Support (IEDFS) where you can ask questions, read articles, suggest helpful ideas to others and brainstorm as a group to solve problems and feel supported.
- Ask dieticians to be mindful of setting flexible meal plans, with suggested replacement equivalents as a guide to help navigate the lack of particular foods.
- Freeze meals so there is some in storage if possible.
- Petition supermarket chains to recognise that with eating disorders, “Food is Medicine” and cannot be denied or limited: we would not reduce the dose of chemo for someone with cancer or the course of antibiotic in someone with infection in such circumstances, as the treatment would not work. The same applies to those who need frequent and high calorie renourishment to repair the damage to the brain and body caused by the mental illness.
- Help each other by sharing recipes, suggesting changes that can be made to tweak high-calorie meals or offering up food items to others if you have plenty.
- Self-care is vital through all of this madness! Whatever you can do to get 5-10 minutes to yourself to breathe, calm or reduce your stress levels, is so important.
EDFA is working together with our National Eating Disorder Organisation, The Butterfly Foundation, Eating Disorders Victoria and other statewide organisations to show our collective support of an initiative to approach supermarket chains to assist people with eating disorders to have access to the items they need. Food is their medicine and essential that they can get the quantities they need to maintain their health and well-being. Our collaboration gives strength to the request to allow people with eating disorders and their carers to either have an exclusive hour to access the shelves away from the frenzy of the general or to offer “click & collect” for this group or delivery (which has currently been restricted in Australia to the elderly only).
We just had our first online strive parent/carer support group last night. The parents were very appreciative of this initiative and described the extra anxiety this virus has created for them as carers and for their loved one with the eating disorder, worrying about whether particular foods or brands will be available, having limits of one or two placed on particular items can be problematic when trying to renourish and requiring megacalories per serve (cream, oil, etc), social phobia heightened by the frenzy of crowds in supermarkets, seeing people stockpiling and loading up trolleys can add further to their anxiety or panic, the uncertainty of ability to follow a meal plan when rigid thinking is part of their illness, germ phobia with some is obviously exacerbated with the crowds, etc.
The group suggested a formatted document could be drafted by this group which people with an eating disorder or their carer can download and take to a member of the clinical team to sign and stamp as evidence they qualify for the exclusive shopping hour/period:
- With eating disorders, food is medicine and should not be denied or limited.
- People with eating disorders must follow the prescribed amount and frequency of eating, in order to maintain their health. They are also prone to anxiety so not being able to get the required prescribed foods or in the quantities needed will further set them back in their recovery.
- We would not reduce a patient’s dose of chemo or antibiotics in such a situation, as treatment would not work. This is a comparable example. Skipping meals or losing weight is actually harmful to people with these potentially deadly mental illnesses.
Perhaps this is an approach which could be implemented in other countries around the world to try to help people with eating disorders and their carers get the all-important food items required.
Wishing you all the best as you continue to support your loved ones through this unprecedented time of worry and uncertainty.