Eating disorder awareness week: a parent’s story – Part 1
March 3, 2022
Eating disorder awareness week: a parent’s story
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
My daughter was 16 years old at the time of diagnosis. She had started college, after spending a fair time out of school in lockdown. She was the GCSE intake that never got to sit their exams.
I thought things were going well, and that family life was ok. She had a boyfriend, and she said she was meeting friends and going out with them when she had started college. I was very busy at work as we all were in the NHS during covid times. I guess I didn’t notice anything untoward at the time. But that all changed on the 11th March last year.
I had a call from the college stating that they were concerned about her attendance. My daughter had always been a fairly studious student, she has great plans to become a zoologist. I remember the day when she was so excited to tell me she had worked out what she wanted to do when she left school “Mum, Mum, I know what I want to be when I am older, a zoologist, it means I can work with animals and maybe travel the world”, she was so chuffed. We looked at the qualifications needed she was about 14 at the time, so just at the right time to pick the subjects that would help her to achieve this goal.
I wasn’t phased by the call, in fact at the time when I was on the phone I called down my daughter from upstairs, to ask her if she had time off. I was mainly working from home, but I was often working in my kitchen/conservatory and she was, as far as I was concerned logging into her college lessons remotely. My daughter denied that she had time off and said that there was maybe an issue with her logging on and they hadn’t captured her attendance. I had agreed with the learning coach to check to see if the tutors had any concerns with her work/tests and if they didn’t it might be an issue with the logging on. If, she had missed as much as they thought (her attendance was 74%, then I was confident that this could be picked up in her grades. In hindsight I learned that this wouldn’t have been a good indication as many young people with eating disorders are in fact high performers and perfectionists. According to studies “perfectionism appears to play a role in the aetiology, maintenance, and treatment of eating disorders” (Bardone –Cone and Colleagues 2010).
At the time I thought this reasonable evidence to assure me all was ok with her. Later that evening after the phone call, She seemed a lot more withdrawn, quiet and she looked unwell, tired having dark circles around her eyes. We didn’t really discuss the call from the college as I was fairly satisfied that all was ok. But I was concerned about her subdued state. I kept asking if she was ok, unwell maybe? She said she was fine, until a few hours later and she broke down in tears. I immediately took her somewhere private and asked her what was wrong, she told me that she thought she had a problem with food. Being a nurse I have had some limited experience with binge/bulimia and anorexia nervosa. I remember one client having anorexia nervosa and me thinking at the time, I hope none of my children ever suffer this terrible illness. I’m not going to lie, the first thing I thought to myself of when she said she had an issue with eating was “I hope it’s not anorexia nervosa”. I calmed her down, I reassured her we would get some help, I stated that this is not something I can help her with on my own and I would need some professional help. I took it seriously from the minute she told me.
I remember asking her whether she weighs herself regularly and she said every time she uses the bathroom, maybe more. I had worked out her BMI to be very low. Being a nurse I knew she was seriously underweight. After reassuring her that we would get support and that she will recover she went to bed and I immediately threw out the scales that night. I knew that night that life would become different and that I needed to try and seek specialist help. Eating disorders are complex and should never be treated by family members alone. I knew life was going to get hard, but at that time I’m not sure I really understood how hard things would get for us all.”
The referral and wait for support
“So the next day I called the GP, who spoke with me and my daughter. The GP agreed for a referral to be put in to the eating disorder team as he thought she had anorexia nervosa. I reckoned this would take about a week or so, so I decided to call a private professional who specialises in eating disorders, who could give some telephone advice.
I discussed with him about offering food to her little and often. I was aware that she needed to eat but also the dangers around refeeding. Refeeding syndrome can occur when someone who hasn’t been eating starts eating and can have electrolyte imbalances, which can cause serious clinical complications. It was strange as I had seen her eat meals, it wasn’t like she hadn’t eaten for weeks on end, but I started to replay the times in my head that she said she had eaten before she came home, the times when she said that she was ill with a bug, the times that she may have skipped a meal. Then I asked her if she purged (made herself sick) she was honest enough in her answer. She said she started to occasionally be sick in September, then she said it got a bit better to only once a day, then in December with all the Christmas treats around she was being sick more frequently in the day. I was mortified that I hadn’t noticed any of this behaviour, I hadn’t heard wretching, I thought she was eating, I saw her eating meals, she sat and ate with the family most of the time. I went through a journey myself, as to why I hadn’t noticed. The guilt at being a mother and not noticing and then piecing all the behaviours that I hadn’t thought of being odd, now seemed to make perfect sense knowing about the eating disorder. The going to the toilet late at night, double flushing of the toilet, showers or taps on full blast to drown out the noise of wretching. The baggy clothes she was wearing wasn’t because of Billie Eilish as a role model, it was because she had an eating disorder and wasn’t comfortable with her body and was covering it with baggy clothes, or maybe she wanted to hide the weight loss from me?
The exercise I hadn’t even thought about, because I had taken my dog for a general check up in the January, the dog was a little overweight, and so my daughter went about taking her for long walks, for an hour or so each day. I didn’t think anything of it at the time, but I felt guilty and feel I failed her completely.
The first two weeks whilst waiting for support to kick in was tough, she went through constant feeling of bloating and feeling sick. She had been eating very small amounts but even that was very tough for her.
One day she was complaining of pain in the chest. I took her straight to A&E, she had blood tests and an ECG. I saw my little girl scared for the first time. I remember her asking me in A&E, “have I caused permanent damage, will I die” I reassaured her that if she eats and gains weight she could recover fully. I had thought that might have been a lightbulb moment and it may have shocked her into eating, but eating disorders are complex, and sadly things got worse before it got better.
One thing that stood out from that day in A&E was that two Junior Drs asked my daughter about her weight, and said she felt overweight, and they told her that was silly to think that. This had upset her and she felt that her feelings were not validated. To me it felt that they seemed to down play her condition. A person with anorexia nervosa often has a distorted view of themselves even when they are dangerously thin.
Thankfully her bloods and ECG remained fine, the Registrar was happy that the GP had referred her onto an eating disorder service and she came back home. I mentioned to the Registrar about the Junior Drs and he apologised for what they had said. This incident of the two Junior Drs was the first example of many that I encountered from health professionals, family and friends with a distinct a lack of awareness of eating disorders. Having said this, it’s not easy to get your head around such a complex disorder. I know more than most, as it’s been a difficult journey for me to understand it.
In these two weeks I had gone from having what I thought was a daughter who was fit and healthy to learning that she was over exercising, purging, restrictiing calories, to the point of going days without food, and had some really awful body distortions. I was trying to be strong for her, but all the while feeling immense guilt that it hadn’t gotten so bad that I didn’t notice. But that’s the thing with an eating disorder, the sufferer wants to hide it. My daughter, as ever the perfectionist hid it well for as long as she could. Some people carry on for years like this. For others like my daughter it gets out of control fairly quickly and starts to take over normal life.
CAMHS
“After a few complications with the referral, the GP accidentally referred to adult services and actually put the wrong weight on the referral meaning no one really had an urgency to see her or escalate the referral quickly. After what seemed like a million phone calls she was finally referred to CAMHS to their ED team.
I knew something was serious when they called on the Thursday giving me an appointment for the following Wednesday, but they called, Friday, Saturday and Sunday to check on her. No exercise was allowed (which I had stopped the minute I had found out), three meals and three snacks. Milky drinks and no going to the toilet straight after food to prevent purging (up to and 30 mins after food as purging can reduce).
When we got to the CAMHS it was slightly surreal. She got weighed and I saw she had gained weight from the time I took her to A&E I was more confident we were on the right track and that given time I was hopefully she would gain weight at home. But after about 40 minutes into the appointment the ED Specialist CAMHS consultant said she needed to go to hospital for an inpatient stay as her weight was dangerously towards a healthy weight, meaning she needed to get to a target weight for discharge (that wouldn’t be a healthy weight, but a weight where she could function at home and college, until she would remain in hospital until she was around. I think at the time we were both in a bit of shock. I asked when to she needed to go and he said now as the paediatric unit had a bed ready. We both left the appointment to pack a few things before she went into hospital and we both cried on the way home, and to the hospital, I think we thought as she had gained weight there had been enough progress to stay at home. I was left questioning that why two weeks ago when I took her to A&E when she was at a lower weight she wasn’t admitted then, again I can only assume that there was a lack of awareness of the dangerously low weight by professionals (who were not ED disorder specialists or CAMHS specialists and probably did not understanding anorexia nervosa, and they maybe hoped that the CAMHS referral would be urgent (but no one at that stage knew the GP had put the wrong weight on the referral form). On a positive point finally we were getting some professional help some five weeks after I had found out. Those 5 weeks were scary as a mum, and I was frantically trying to research all I could about eating disorders, but I had no idea that things may get worse before they got better.