Eating disorder awareness week: a parent’s story – Part 2
March 3, 2022
Eating disorder awareness week (28 February – 6 March) aims to raise awareness of eating disorders in the UK. Eating disorders are a devastating mental illnesses that affect 1 in 50 people across the UK with many suffering in silence.
They are of all ages, genders and backgrounds – eating disorders do not discriminate. Eating disorders include bulimia, binge eating disorder, avoidant/restrictive food intake disorder (ARFID), other specified feeding or eating disorder (OSFED), and anorexia, which tragically has the highest mortality rate of any mental illness, though all eating disorders can be deadly. While this is the worst-case scenario, there are many ways in which eating disorders severely affect the quality of life of both those suffering and those who care about them. They steal childhoods, devastate relationships and pull families apart. But, with the right treatment and support, recovery is possible.
Throughout the week, Emma Barton, SWB Convenor and Unite the Union Senior Workplace Representative will be sharing her daughter’s eating disorder journey.
Discovering my daughter had an eating disorder, by Emma Barton (continued)
Hospital
My daughter was on a paediatrics ward, being nearly 17 this was quite hard for her. There wasn’t anyone of a similar age, but what was really hard was that she had a plan of food that was made for her, there were few choices for her. I had been giving her what she wanted when at home, which I assumed was the right thing. I was later to learn that giving someone with an ED choices also comes with danger as they will dictate the food that they can and can’t eat. I have to say at this stage her “fear foods” consisted of any products with flour in, bread, cakes, crackers and such like, rice, pasta and potatoes. Basically most staple carbohydrates.
So giving choice to her was innocently naive of me in my hope to just get her to eat. But now I understand that if you give an ED an inch it will take a mile. Even now she cannot make a choice about meal times, but is learning to select appropriate snacks. But I was at the start of this journey with her and neither of us and my extended family really understood how anorexia nervosa operated.
After a few days of a re-feeding diet and bloods taken every day gradually increased her food calorie intake on a plan known as the Maudsley Meal Plan. I visited every day for three weeks and when I could I stayed over. My daughter lives with me and two younger siblings, and I don’t have a partner so I needed to split my time between work/home and hospital.
She had her 17th birthday in hospital, the nurses were great and decorated her room and gave her presents. They allowed us to take her out in the wheelchair where we sat outside on the hospital grounds and had a socially distanced family celebration. I saw a spark of my old daughter coming back, she seemed to really enjoy that day.
A few nights after that I stayed over the night in the hospital as she had a side room and she had a shower and when she finished and was in her night clothes she started to sob. She confided in me to tell me she had felt a “fat lump”, it was on her stomach. She let me look at this and what I saw was a tiny blister. My daughter was still struggling from stomach pain and bloating so I had given her a hot water bottle to ease her discomfort, this had scalded her skin and caused a tiny blister. She then went into a panic saying that she was fat, and that she had “fat nodules” on her neck. These were in fact her vertebrae in her neck pocking out. I think the reality of her distortions were really hitting home.
During her time in hospital the nurses and Drs tried really hard to care for her but if I’m honest they were not equipped to support someone with an eating disorder, the meal pan couldn’t be followed as per the Maudsley plan, as it was quite prescriptive and didn’t accurately follow the hospital menu. The breakfasts were ok but lunch and dinners completely differed to the plan. If I’m honest that didn’t give me much confidence and I think it troubled my daughter, as she didn’t really know what she was having as she had been given the Maudsley plan by CAMHS to follow but the hospital menu did not accommodate the plan. Also no clinical workers were monitoring the portions when the food trolley went to the ward. The staff that were serving the food were giving far smaller portions than she should have been having, but as they were not clinical staff they could not be to blame. The problem is with an anorexic is that they will never ask for more and they are more than happy with less food. They are intensely frightened to gain weight and therefore to eat and sometimes it can be certain foods they refuse, sometimes not eating at all, other times purging as the fear to gain weight and the guilt of eating takes over and the need to control and restrict becomes stronger the more poorly they become.
All food should have been supervised but this was often done from a far which meant there was opportunity for my daughter to dispose of food when she had visited the toilet after eating. I didn’t know this was happening at the time and it was only after she was losing weight in hospital that I suspected something wasn’t right. I thought it was the potions being small but I found out when she was discharged after a week of being home she was hiding food and disposing of it in the ensuite toilet.
She was discharged due to her losing weight as she wanted to come home and I felt she could be monitored better- afterall, being a nurse I absolutely understand the pressures and demands of working on a ward. The advice on discharge was to eat normally with her, with normal family meals following the plan, to lessen her anxiety around food, but to always supervise her, which I did at mealtimes when we were eating together. I was off work at this time and I was ensuring the plan was being followed and we had the family meals we were advised to continue. After about a week following discharge I took my daughter to her appointment at CAMHS and I had an inkling something wasn’t quite right. I asked my mother to nip round and just check her room to make sure she wasn’t hiding any foods. We went to CAMHS, she had gained weight which was progress from the hospital, but as we were leaving my mum called me on the phone, she asked me to go round to her house as she had to share some worrying news. My mother had checked my daughter’s wardrobe (only her wardrobe), and in little over half a week there was half a black bin liner full of half eaten food. I was mortified. On one hand she had gained some weight which was great news, but on the other hand she was not following the plan. I couldn’t get my head around how she was hiding this food, it must have been in her pockets, hood, up her sleeves. That’s when I worked out that she may have done the same in the hospital and flushed it in the toilet. I told my daughter what had been found in her room, and asked her about hiding the hospital food, which she confirmed was correct. That night and the following day she point blank refused to eat or drink anything. I’m guessing now it was because her method of hiding food was no longer going to be an option as it was obvious to her I would have to check pockets and sleeves and supervise her like a hawk at mealtimes.
To illustrate how bad anorexia nervosa gets, even water is fearful for the sufferer. The water gain for an anorexia nervosa sufferer is frightening, they can easily become dehydrated as well as lots of other nasty complications like that come with the disorder.
She started to develop some strange ideas after being discharged, and her mental health was declining, she said that me and the medical professionals talk in code and she believed that we all thought she was overweight and we spoke in code regarding her weight. I was getting increasingly concerned and as she was not eating and drinking so I was requested to take her back into hospital.
After being admitted to hospital they decided when a bed became available she would be transferred to a specialist eating disorder unit. I was warned it could be very far away from our home, one previous admission ended up going to London. And the length of stay would most likely exceed a few months.
A bed became available after a few weeks and we were lucky as it was in the West Midlands. She was fully supervised in the hospital in the meantime. She had bathroom privacy only at this stage.
Incidentally during that time she was in hospital, I had to clean her room and check for hidden food. Her drawers were crammed with half eaten food, it was in plant pots, under her bed, in pockets hung in her wardrobe. I think one of the saddest moments was when she asked me to take into hospital a small pot of moisturiser on her bookcase, it was crammed full of tortilla chips. My daughter is a tidy girl and would never have normally lived like this, but it goes to show how the illness can take over an individual to the point you start to hardly recognise them. It was then that I started to separate the ED from my daughter, which really helped.