Submitted by Mary

I am a parent of a child, Emily, who developed anorexia at the age of 14. Building a support network is something I didn’t think was possible. I didn’t feel I had what most might have as starting points, such as available family, and didn’t have the confidence to believe that anyone was going to be able to help anyway. Those family members who might have been of significant support were either no longer around or abroad. It demands a certain kind of relationship to be able to communicate what you need and for that to be heard, and with that, an understanding of the eating disorder you are dealing with – all a hard ask of anyone. Friends, whilst meaning well, can often leave you wishing you had never said anything! It does generally take some lived experience to understand this most irrational of illnesses.

My way of dealing with the stress of recovery was to keep my eyes fixed on the eating disorder service that we had been referred to. Whilst the support we had was instrumental in my daughter’s recovery, in that we felt very supported as parents, encouraging us every step of the way – it wasn’t the same for my daughter, who felt left out of the process even as she dutifully sat with us in every session. The message was that she was too unwell to be listened to. This made recovery for her a particularly frightening experience. To her enormous credit, she still came with us week after week. I know that this isn’t everyone’s experience at all, and that for others the service they receive is incredibly helpful and enabling. It’s like any service, there is sometimes perhaps a clash of personality or a misunderstanding of someone that can send things a bit off course, which for someone needing firmness but also enormous sensitivity can make things so much harder.

I feel now that if I had looked further afield for support, I might have been able to listen to my daughter more carefully and soften the harshest aspects of the process we were engaged in. Whilst my very forgiving daughter says “mum, I think it was always going to be messy”, I do wish that I had enabled her to have more of a voice in those hard weekly sessions.

“Looking back I would have really benefitted from the experience and wisdom of others who had trodden that path before me.”

There is such a lot of experience out there, within charities such as Talk ED, written in books and shared online. I wish I’d had the head space and the confidence to look further afield and gain from all that shared wisdom at the time when I needed it. I was even recommended a book by a friend but I didn’t read it until much later. For much of Emily’s recovery I lived in a bit of a bubble with her – in another bubble with my husband and her brother – and a third one at work. I moved between those bubbles and everything else faded into the background. Consequently I couldn’t really see or hear anything else; life was too tense, too full and too noisy!

Throughout Emily’s illness, I managed to hang on to my job, which very helpfully got me into a completely different environment away from the struggle at home. I was lucky that it was part-time and that my husband was self-employed, so we had quite a lot of flexibility. I worked as a teaching assistant then, in a primary school and the children there were an enormously joyful distraction, who lifted my spirits the minute I entered the building. I told the headteacher who was very supportive and other members of staff knew to send me off for a cup of tea if I arrived at work having had a difficult morning.

I also joined a choir mostly because the opportunity just appeared in front of me, rather than because I was doing anything active to make it happen! It wasn’t something I would have thought of doing on my own. Some friends were going and I saw it as an opportunity to leave the house for a few hours every Thursday evening. Looking back, I think it was very therapeutic and one of best things I could’ve done. As well as having a way of expressing myself every week, we had local concerts to prepare for, with all the focus on learning parts and dressing up that goes with along with that!

During the first 2 years of Emily’s illness I managed three breaks which were very helpful and memorable. The first was when Emily was well enough to stay for a short weekend with her aunt. To make sure that the visit was as enjoyable a break as possible and as stress free as possible, we sent her off with the food she would have alongside pre-prepared main meals. We didn’t want to add any new challenge to that stressful time for Emily, it was just about keeping going with what she was doing at home.

The next break was during an Easter holiday; my husband took over the routine while I went on a five-day retreat. I wanted to go for a weekend, but that wasn’t available so a little reluctantly I signed up for the five days. Everyone was there for different reasons, different struggles. It turned out to be very calming; peaceful and cathartic and I’m very glad I had the extra days – a weekend wouldn’t have been enough. A significant part of the day was spent working outside, doing all the jobs needed to grow fruit and vegetables. I was amazed at how much better I felt having spent so much time absorbed in nature, which was a contrast to the much more indoor world I had inhabited looking after Emily.

The third time was when we were discharged from our local eating disorder service after an intensive 2 years. Emily stayed with a friend and my husband and I had a long weekend’s holiday to celebrate how far we had come.

“Caring for someone with an eating disorder is exhausting, there is no day off. It is so easy to lose sight of your own needs in the intensity of the situation.”

Taking time to pause, reflect and celebrate achievements along the way is important for parents as well as those who are struggling. The people that can step in to enable those breaks are invaluable.

Our ability as parents to be calm and compassionate makes such a difference – when I think back to times when I didn’t manage that, I realise now that I was too tired, physically or emotionally. Those times didn’t help anyone, and though there will always be some inevitability to those moments, I still regret them – forgiving myself for only being human (and tired). They made my daughter more anxious which didn’t help her at all. Building a support network will mean that you can take better care of yourself, giving yourself time to recharge when you need to, in order to keep your ‘cup topped up’. Here are some thoughts for building that network:

• Hold on to another life if you can – there may be a way of making ‘work’ more manageable
• Choose a few people who understand, to talk to
• Keep a social life as much as you can
• Have something/s regular in the week that is/are just for you
• Indulge in some pampering!
• Give yourself regular treats – evenings out perhaps or during the day if that is a better time
• Have a proper break away when it is possible
• Consider having some counselling/therapy
• Spend time outdoors; nature helps
• Look widely for help and support: through charities such as Talk ED, books and social media

Above all, remember that whatever you give to yourself you will undoubtedly also be giving to the person you are caring for. Your wellbeing affects their wellbeing. Those supporting someone with an eating disorder are on the journey up the mountain too, and need to be fit for the climb! Building a support network will enable you to maintain that fitness to keep climbing until you get to the top, with its view, and normal life again.

If you are supporting someone who is experiencing an eating disorder or eating distress, talk to us. We will listen empathy and without judgement and offer practical guidance and strategies. Why not book a 1:1 support call, or our online peer support group for family and friends?