By Sue James, F.E.A.S.T. Parent Peer Support Volunteer
“Think of food as your child’s medicine just as if your child had cancer and required chemotherapy,” we were told by the lovely nurse. This made perfect sense to me when my daughter was admitted to hospital in late 2019 with anorexia and a low heart rate. I was an oncology nurse with many years experience; I understood chemotherapy but I had no experience of the rollercoaster journey I was about to begin with eating disorders and Family Based Treatment (FBT)!
It’s nearly 2 years now since her diagnosis. My daughter is in strong recovery at the moment and I have had time to reflect on this analogy. Food is definitely medicine for eating disorders but I’m not so sure about the comparison with chemotherapy. Let me explain my thoughts…
Firstly we all know that if your child has an eating disorder there will likely be no casserole deliveries and the conversation with friends will probably be about why this has happened and what/who caused it. No one asks parents why a child needs chemotherapy and what/who caused the cancer.
We were very lucky to receive fantastic education about FBT Phase 1 over half a day and had a session with a dietician before my daughter was discharged from hospital after a 2 week stay. We received no education about Phase 2 so I did my own research and realised that my daughter had been allowed by health professionals to cut out red meat for 10 months of FBT and research showed it was essential for sustained solid recovery. As my daughter pointed out to me in her eating disorder rage, “What do you know? Seven health professionals haven’t mentioned eating red meat to me!” After a massive struggle with an eating disorder and the benefit of family therapy, she now eats all meat.
Chemotherapy patients’ education is ongoing over the period of time they are having treatment with continued support from health professionals over many months, even years. The correct chemotherapy dosage and combination is crucial to shrinking their tumour. My husband and I administered the food and the BMI goal weight was reached, but it made no sense to me as my daughter’s condition did not improve, it worsened; she was suicidal! Thankfully, those at F.E.A.S.T with lived experience told me to add more food and it worked; after 3 weeks, she was a totally different person. If my child had chemotherapy, I would rely on the oncologist to know the correct dosage required to kill the tumour whilst minimising any side effects. I would not be expected to adjust the dosage myself to save my child.
My daughter began to self harm at weight restoration and we locked everything away and took her to see the psychiatrist and psychologist. I eventually asked if a referral for DBT would be a good idea. If cancer patients have symptoms following the end of treatment, they are assessed and referred to the relevant health professional by their oncologist. Families are not expected to research this themselves and suggest referrals.
My daughter has now been discharged by the pediatrician, psychologist, psychiatrist and dietician. There is no follow up unless we have a problem, then we can go back. My husband and I have the task of assessing her mental health. If she relapses she will go into the adult system now. This is scary as I didn’t recognise her eating disorder the first time! Hopefully I’ve learnt something along the way but eating disorders are notorious for being secretive and that’s scary. Patients who have had chemotherapy are followed up closely and regularly for at least 5 years by an oncologist and given survivorship support.
My point in writing this is to highlight just how important it is to educate yourself and gain knowledge at every step of this journey as you are the person who will advocate for your child in a mental health care system that is lacking the same funding, research, education, support and care that is given to patients who suffer a physical illness.
My dream and hope is that some day, mental health will be treated the same as physical health with clear individualised pathways of referral, therapy, care and support. Until then we are left to navigate this system as best we can. I realise that my daughter’s recovery is in large part due to educating myself as much as possible, advocating for her and trying to find the missing pieces of her recovery puzzle.
Learn as much as you possibly can about eating disorders and use all F.E.A.S.T. ‘s educational resources and supports so you can advocate for your child and get them into recovery. Listen to those with lived experience who have gone before you.
I wish you all the best as you navigate your own eating disorders journey and remember food is definitely medicine for eating disorders (but nothing like chemotherapy in my opinion!)