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“There is no end goal – we just take each day as it comes”

My daughter became ill with anorexia just a month into starting high school. I had been convinced that she was ready for the move, and was going to love being in a more grown-up environment and beginning her GCSEs. I had been so busy focusing on her twin sister starting a new special school and finally getting the help she needed that I assumed Martha would transition smoothly and have three happy years, making new friends and loving life!

Nothing could have been further from the truth – our children have a knack for blindsiding us, don’t they! Sometimes the calm, confident, academic, emotionally controlled exterior our loved ones portray is not the real story. In fact, Martha was dreading the change. She was struggling with friendships and not looking forward to the pressure of doing GCSEs. Growing up was not something she wanted to do. Change can be very scary and for some, unfortunately, developing an eating disorder is a way of controlling one aspect of life when everything else in their world is uncertain.

By November Martha was severely restricting her food intake and I took her to the GP. She stopped going to school full time in December and received a diagnosis of Anorexia Nervosa and was admitted to hospital in February the following year. I remember her being so ill, but the hospital teachers still came to try and get her to do some work so she didn’t fall behind. She had no interest at all….in anything. Nurses were asking her what GCSEs she was doing and what she wanted to do when she left school and it all seemed so unreal. How was she going to do her GCSEs when she couldn’t eat a slice of toast?

Over the last three years, Martha has been hospitalised a number of times, been in and out of mental health and specialist eating disorder units, has undergone therapy and various programmes, as well as being medicated. In January this year she came out of hospital, started to accept her illness, follow an eating plan and start revising for (most of) her GCSEs. She dropped a couple. The revision has all been done at home. She ticked the exams off one by one and each one completed was a mini celebration, even if any of them had been the last one she felt able to do.

What has helped? Martha’s school has been great at putting no pressure on her, keeping in touch and fitting around what she was able to manage. She has not been at school full time for the last three years. (Having school online during the lockdowns ironically helped her as it was not so obvious she wasn’t there and she could access resources.) CAMHS have been brilliant at liaising with the school, and I have let them decide what Martha is up to doing.

Relinquishing control as a parent/carer is hard, but what has helped a great deal has been to offload the burden of decision-making. Martha would beg me to let her stay at school for the whole day, but if CAMHS advised she wasn’t physically able to do that then we stuck to their advice. I kept telling Martha that they are the professionals and they know what is best. The eating disorder needed to hear that too. Black and white. No compromising. If Martha didn’t eat breakfast then I wouldn’t drive her to school. The times when she was in for a few more hours I would drive to the school and have lunch with her in the car. Martha could not eat at school at all, so we worked around it.

Making one really helpful contact at the school was extremely beneficial. For us this was an office staff member who I could chat to, ask her to pass messages on to teachers, remind senior staff members to fill out paperwork and arrange meetings with CAMHS, keep a general eye on Martha and be there to greet her when she went into school. I am so grateful to her! Another helpful tactic was starting slightly later to avoid the morning rush.

Martha got through the last three years by purely seeing school as somewhere she could access teachers, ask questions on things she was stuck on and be on their register so that she could complete the exams. We took away any expectations of her ‘enjoying’ the social side or joining clubs and getting involved with school life. It was purely a means to an end. And while this may seem quite sad, it took the pressure off her shoulders. Every day is a battle when you have an eating disorder and just getting through the day is an achievement in itself.

Accessing the Solace groups through Beat and carrying out their training programmes has helped me immensely. I have learned how to support Martha through this illness and to remove myself and take time out when the eating disorder rears its head, rather than engaging with it. It wants Martha to have no education, no future, But, like you reading this, I will do my best to stop this happening when she is unable to.

Martha completed all 23 of her GCSE exams, one day at a time. We don’t know the results yet and while I hope she is happy with how she did, I am the proudest mum because she sat each one. The results don’t matter. Her determination is incredible. She has decided to go to our local college to do A Levels rather than stay at the school sixth form. She is excited to start and to make new friends and have a fresh start. We have met the school guidance team and they have assured me they will keep an eye on her and that their door is always open for us both.

I have no expectations this time. I can’t predict how Martha is going to feel. She might love it. She may hate it, find it all too much and start to struggle again. But she has a support network in place now. There is no end goal – we just take each day as it comes, try to enjoy the journey and not worry about the destination. If we are open and honest about Martha’s illness, we have discovered that people want to bend over backwards to help.

So my advice is to talk and connect and give people the opportunity to help you. Be the go-between for school/college and community services and try not to have too many other changes going on while the transition is taking place, for example changes to medication. And finally, (try to) stick to a routine. Make sure there is enough time for breakfast, prepare a packed lunch perhaps, or look over the school menu before the first day. Prepare travel arrangements. This helps all of us when we start something new, but for your loved one it could enable them to continue with their recovery journey.

Wish us luck as, despite all good intentions, I’m sure we’ll have days when the bus arrives late, the dog eats the lunch, we forget an appointment or there are no clean clothes! But we’ll keep trying.

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