"What I wish I'd known then" – Carers reflect at Frontline

Posted 23/11/2017

Throughout our Frontline conference, we looked at the ways eating disorders affect carers, as well as how they can support their loved one. On day two of the conference, three parents with experience of caring for their child spoke at a panel about what they wished they had known when the illness first developed, as well as what they found helpful when supporting their child. Here are some of the suggestions that emerged throughout their talks and through questions asked by the audience.

  • Nick Pollard, whose daughter has experience of an eating disorder and is now a doctor herself, talked about the desire to just “fix” it, and the difficulty – and the importance – of moving away from that mindset and recognising that recovery is a journey, in which people may sometimes need to celebrate the little steps forward, even if they’re sometimes followed by larger steps back.
  • Lynda Kent, whose daughter experienced a severe and enduring eating disorder, but was unable to get adequate support as she wasn’t considered “ill enough”, talked about the difficulty of being a carer when there was no one around who understood. While more still needs to be done, there are more places that those caring for someone with an eating disorder can turn than when Lynda’s daughter first became ill, including our  Bluejay and open support group the Aviary.
  • Cristina Brown, whose daughter is now recovered and thriving in her second year of university, said that, although she already suspected it herself, it was a shock when her daughter was diagnosed with an eating disorder five years ago. It helped her to hold on to the knowledge that she was in a unique position: as a mother, she loved her daughter unconditionally.
  • Cristina acknowledged that it soon became clear everything she thought she knew about eating disorders was inaccurate – they are not about food but about emotions. Lynda agreed that it isn’t just about “eating normally” – treatment should always address the underlying thoughts and feelings, not just the physical effects of the eating disorder. The NICE guideline for eating disorders suggests various psychological interventions that healthcare professionals should consider when treating someone.
  • Nick talked about the importance of helping the person you’re caring for to engage with their treatment. Eating disorders aren’t a choice, but in order to get better, those suffering need to feel motivated to do so. Encouraging his daughter to think about what she wanted out of life, and helping her to understand that the eating disorder was a thief that was taking these goals and dreams away from her, enabled her to better engage with therapy, he said.
  • Emerging from a question posed by an audience member was the fact that these goals don’t have to be big. It can be so difficult to help someone think beyond their eating disorder, or to feel ambitious when the eating disorder has severely affected their self-esteem. But it can be something as simple as wanting to be able to go out for a meal that can help them to want recovery.
  • For Cristina’s daughter, goals included things like travelling or going to a music festival. Cristina encouraged her daughter to create a “wish board” to help her feel motivated, turning it into a creative project. Their home had a “wall of inspiration” in the kitchen too, to help Cristina’s daughter feel encouraged during meals.
  • Carer skills workshops were particularly helpful to Cristina and Lynda. Not only did these provide connections to others who understood what they were going through, but they offered useful techniques to help take care of their children. Beat offers carer skills workshops through our contracts with Trusts and organisations around the UK. You can find out if there is anything available in your area here.
  • A technique Cristina found particularly helpful when things became upsetting or difficult was imagining that you’re watching a situation unfold not through your own eyes, but from high up in a corner of the room. Distancing herself in this way helped her to stay calm in front of her daughter when she needed to.
  • Helping someone to understand what things might trigger them is important. For example, for Cristina’s daughter, the eating disorder was a way of coping with academic pressure. After she had recovered, recognising that pressure building again at university enabled her to reach out for support early, preventing her from slipping back into the eating disorder behaviour.
  • Nick agreed that staying in close contact after recovery was important if the person you’re caring for moves away, for example. And an audience member suggested getting in touch with available support in their area if you can – for instance, university mental health services. Different universities will have different policies, but it can still be worth asking.

While every carer’s situation will be different, and all three panel members acknowledged that they can speak only about their own experiences, we hope that the panel was engaging and informative, and offered some ideas that others can use when caring for their loved ones.