Eating disorder awareness week: a parent’s story – Part 4
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.
Emma Barton, SWB Convenor and Unite the Union Senior Workplace Representative continues to share her daughter’s eating disorder journey.
Discovering my daughter had an eating disorder, by Emma Barton (continued)
During admission
My daughter was in the unit for 9 months in total. Things got worse before they got better. She was highly anxious for about the first 5 months. She didn’t speak to any of the other patients. She slept pretty much most of the day and night apart from meal and snack times and in school. They had school Monday to Friday around set meal and snack times. I think during the first two weeks was really hard as she had no bathroom privacy, they have to closely supervise all new admissions like this until they know risks of self-harm and purging are less.
My daughter’s mental health really declined around two months in, she was up and down with her meal plans missing frequent meals and snacks but just enough for her to gain very small amounts of weight. Quite a few times she had a weight loss, but generally she was going in the right direction, but very slow progress.
During this time I felt guilt, frustration, powerless. I was warned by staff at the unit that I may get phone calls from her saying how horrible it was and that the staff are nasty, they said most patients will say that but it’s the eating disorder talking. She did this for months and it was really hard for her and me, as I never really knew if it was the ED or my daughter, or a combination. It was horrible knowing my daughter was elsewhere where I couldn’t care for her. One hour visit per week was awful, especially if she was distressed begging for me to take her home.
The unit did some work with me regarding understanding anorexia nervosa, I had some knowledge and had read up where I could, I understood about the body distortions, the hiding of food, the absolute fear of weight gain and the distortions around food and calories, my daughter’s perception was that even one mouthful of food would result in excessive weight gain, which of course isn’t correct at all. I knew she didn’t understand or have any insight into her illness, but I didn’t understand why she wouldn’t accept her illness. I thought if she could accept her illness we would be halfway there in recovery, that’s the perfectionist in her you see! What I learned, is that sufferers can develop something known as anosognosia, which means that a person who is ill cannot perceive that they are unwell. This is really hard to understand, and why it was so important for me to separate the illness from my daughter. Many people assume that ED are a choice, but no one really sets out to become unwell with anorexia nervosa, it’s really not a rationale choice that a sufferer makes or understands, in my daughter’s case she had no insight at all.
The best way that helped me to understand the illness, was that she had been clearly overwhelmed with emotions for lots of reasons and it may have been the first time she had experienced such intensive emotions and, somehow, she needed to control those emotions and she developed a strategy to cope/control by restricting food. I suppose similar to someone drinking alcohol or substance misuse at times of great stress, although I recognise none of these methods are healthy choices to cope. This kind of helped me to understand better because a long time ago I was a nurse specialising in substance and alcohol addictions.
Trying to get my daughter to see things this way or to accept this illness was far harder. All the professionals talk about the eating disorders “voice”, this helps to separate the eating disorder from the sufferer, but she struggled with this as for a long time she felt it was her “voice” and she thought we were all talking nonsense.
It took her a long time to accept she had an eating disorder and I think the turning point in the end was that she had an NG tube fitted after she started restricting for days on days on the unit.
It was hard to support her with her mental health. She had some real lows on the unit, she started thinking she was in a test and she was overweight in an ED unit as a subject to provide other anorexics patients on how not to over eat. She also thought I was being paid by the unit to keep her there for this test which was really upsetting, but nothing I said would make her believe this wasn’t the case. She was put on quite a few different medications to support her, but ultimately I was told that weight gain would restore a more lucid thought process.
I learnt that anorexia nervosa and a low body weight can causes the brain to starve and sufferers cannot think normally. Both grey matter and white matter can be affected. Although white matter restores fully when back to a normal weight it can take some time for the grey matter to recover.
It wasn’t all doom and gloom, there were also some highs and they let me take her off the unit initially for a few hours, increasing to weekend leave.
She also started to speak with patients more when she had a roommate. We started to see her “old self”, and glimpses of a new emerging traits, in a more positive way.