The cost of eating disorders on the UK is over £9.4 billion but what the financial costs fails to consider is the emotional cost alongside this. Beyond just the person with the eating disorder is their entire carer network. The 24/7 role of a carer watching someone you love suffering this cruel illness. An illness that sweeps through entire homes, families and keeps you awake at all hours. When I think back over my time with an eating disorder, a carer has taken a few forms, my sister who took me to the cinema a few nights before my hospital admission, encouraging me to have a snack and creating a happy memory as we sung Top 40 on our drive to and from the cinema. My parents who sat with me encouraging me to eat, my parents who took the brunt of so many arguments, who stood there as I lobbed food at them. And my now husband, who buffers diet chat, makes sure that restaurants work for me and creates safe environments.
 

Suzanne Baker, Carer Representative for FEAST says; “eating disorders are complex biologically based mental health illnesses and the behaviours that you are witnessing are the effects of starvation on the brain. Your loved one may appear hostile when in fact they can be terrified and in fight or flight mode.”

Juliette’s daughter was referred to CAMHS in January 2019 as she had started restricting and was losing weight. During the appointment with CAMHS, they diagnosed her as Atypical Anorexic. 

 

“The diagnosis made her worse and more determined to lose weight. I think she felt as though she wasn’t a “proper Anorexic“. Over the next few months things got much worse for Juliette’s daughter. “It was a horrendous time for my daughter, but it also impacted hugely on the whole family. At times I did wonder where God was in all this and why He wasn’t healing her. I prayed many times a day as I was desperate to see her get better.” 

 

“My faith has helped me immensely during this time. In early January 2019, I was praying for her recovery. I felt the Lord say to me that “ she would be okay “ Later that day when I was driving to pick her up I saw a rainbow and I knew it was God confirming His promise to me. Although she was very ill and recovery felt impossible, I never gave up hope. Quite a few of the therapists we have met over the last few years have asked me where I get my strength and hope from. It’s wonderful to be able to share that as a Christian I believe in God and I believe he will fully heal her. All glory goes to Him!”

 

Since 2021, Juliette’s daughter has progressed a lot and is now considering university.

 

Eating disorders have the highest mortality rate out of any psychiatric illness, a fact which holds such fear and anxiety. This deadly illness and the danger behind it that holds so many carers hostage at night. And beyond this is the guilt, and often the projected guilt from services where carers can often feel blamed.

“Our daughter was diagnosed in 2006 with anorexia. Treatment was varied, private due to lack of immediate help from NHS & some NHS treatment & offer of inpatient care in 2007.” Jenny and her daughter, Stephanie, faced the harrowing consequences of an understaffed and underfunded NHS. A story that is not unique or an exception but a harrowing reminder of what happens daily. 

 

After Stephanie passed away, Jenny and her husband took great comfort from a local priest. They also “have had and still have a fantastic support from our own congregation and friends and family.” In the hard times, Jenny has learned to have God as her constant. She told me; “During Stephanie’s illness and since her death, prayer has been a constant source of sustenance. Some prayers were answered through “unexpected” support from friends and strangers - kind words and understanding at crucial points, especially from people who understood the pain I was suffering - former eating disorder sufferers and carers.”

 

“I did feel some abandonment when she died, why had God not answered my prayers then to keep her alive? Perhaps he had answered her prayers? I find out though that throughout her solo travels, she was rarely alone. So many people, especially in the latter days, had been with her and shared time together. She had left a positive mark on them and they all spoke highly of Stephanie. So God had looked after her. I still, after almost 16 years have unanswered questions but faith keeps me grounded and that one day we may be together”.

 

Talking about eating disorders can be hard, scary and often feel like whatever we say is wrong, but in order to help the everyone heal, behaviours need to be brought out into the open.