Parents’ Experiences of Children With Anorexia – Sarah’s Story
Sarah’s daughter was 15 when she came to Newbridge House for inpatient treatment, which lasted for seven months. Sarah describes the experience.
The route to diagnosis
Our daughter had just turned 15 and was getting a lot of headaches. I noticed she had lost weight, but initially thought it was due to the effect of the headaches and she disguised it well with baggy clothes. She also became quieter and more withdrawn.
Then one day, she sat down with me and said: ‘Mum, I wanted to lose weight and I have lost weight, but now I don’t know how to stop.’ There had been quite significant and rapid weight loss and this had flipped a switch. The headaches were a side-effect of the real problem, which was anorexia.
The search for treatment
We went to our GP and were referred to CAMHS. It was the end of the summer holidays and by that stage, our daughter was locked in a pattern of behaviour resulting in more weight loss every week and from September onwards, it was a downwards spiral.
Our daughter was seeing a CAMHS counsellor in one place and we found a dietitian at a local hospital who was very supportive, but our daughter was not engaging with either of them. I remember driving to see the dietitian on a freezing, snowy day in December. Our daughter wanted to get out and take some photographs but I was terrified because it was so cold and she was so thin. It was a very, very frightening time and at one point, she developed a kidney inflection due to lack of food and fluid intake.
We did visit one inpatient unit, but it was a mixed psychiatric unit and my husband and I felt traumatised about the idea of leaving her there. We live near to Newbridge and felt very strongly that would be the best place for her.
I wanted our daughter to be at home for Christmas, but by New Year’s Eve, I broke down, exhausted and desperate for help. She needed wrap around care and we needed to know she was safe. It was an immense relief to hear that a bed was available and it was available where we hoped, at Newbridge. But we had to sit down with our daughter and explain to her that she was going into inpatient care, which was very hard and very emotional.
Early days at Newbridge
We were met at Newbridge with open arms, by lovely people – I still remember it clearly today. The staff have a huge amount of compassion for the girls they care for; for the situation they are in. Living nearby, I went to Newbridge most days and during the re-feeding process, I saw, bit-by-bit, my daughter returning – her smile and her sense of humour. It felt like an immense relief not to be waking up every morning with the fear about how she would be, how I would find her. I knew she was safe and all the medical expertise was there for her.
They were always happy for me to call and there was always advice available. In fact, long after discharge, I would call from time-to-time for advice when I needed it and there was always support.
What helped, what worked?
For our daughter, I think the body image work was really helpful and the occupational therapy activities, such as going out for snacks and clothes shopping. There are no quick fixes – as the weight gain improved her brain function, it also brought the conflict and challenging the process, so sometimes it feels like one step forward, one step back. Our daughter is an expert negotiator and battled so hard over her target weight but her psychiatrist remained firm and consistent – and that was the right decision.
Early on, Newbridge helped us separate our daughter from the illness. Quite often, she would do something and we would feel angry and upset with her but the staff would tell us, “it’s not her, it’s the anorexia, don’t be angry with her because she can’t help it, the illness is too strong”. This helped us a lot to understand the power of the illness more.
For us, the family support at Newbridge was vital. Anorexia can blow your family apart and I think you have to fight to prevent that from happening. We are not a dysfunctional family and our daughter has always had love and security but we have had to understand that her anorexia reflects the way she sees and experiences the world; the anxiety that she will always be prone to.
Moving towards discharge
Our daughter was admitted to Newbridge House in February, reached her target weight at the end of June and then stayed until September to carry on with psychological work. They focused on helping her to see that life at a normal BMI is so much more enriching than a life with anorexia. As a family, we had to learn how to try to work out what is the teenager behaviour, what is our daughter expressing herself as a person and what is the anorexia.
Our daughter is now 17 and it is nearly a year since she was discharged. When she left Newbridge, it felt as if the armbands had been taken off. She had to learn to swim on her own and I had to resist the strong urge I felt to jump in and help her. Newbridge has given her the tools for helping to manage her feelings other than through food and now she is putting that into practice. Her weight is stable and she has settled well back into school. I have just started a job, not having worked during her illness and that means I have to trust her to eat her lunch when she is at home on study leave.
In terms of a message to other parents, I would say when anorexia first develops, it is so hard for the parents who are trying to work out what they are dealing with and piecing together treatment which can feel quite fragmented. Do fight your corner and find a GP who is prepared to fight your corner. There are no quick fixes and it is a long journey – and it is your child’s journey; you need to be there for them but can’t do it for them. Our daughter has found life difficult ever since puberty and there is a fragility there still and an anxiety which will always be part of her make-up. Newbridge provided the compassion and safety she needed in the early weeks and after that, the therapy and tools to help her interpret the world in a different and more positive way.
* Names have been changed in order to protect parent and child’s identities.