We had another very busy meeting with lots of issues being addressed. A big welcome to several new families and thank you to all of you who shared your experiences and thoughts. I have summarised some of the key themes in this email and attach several capsules which cover the issues we addressed in more detail.
1. Coping when your loved one pushes you away
It is very common for people with eating disorders to push those closest to them away, and as several of you have loved ones being treated as in patients at the moment, these push backs can be even more heart-breaking. Remember eating disorders are illness of disconnection and the ED voice is a master at driving huge wedges into previously close family ties. Your loved one may be driven to say terrible things to you. Try not to take these personally. Keep lines of communication open, drip feed messages of your unconditional love and your belief they will get through this with your help, and affirmations around their strengths. This phase will pass with time – my son is now so proud of everything I do, whereas in the midst of his anorexia he saw me as the arch enemy. Make sure you are getting time away from the ED voice and if your loved one is an in patient, calmly communicate your concerns to the care team and then try to trust that they know what they are doing.
The attached capsule on collaboration and confidentiality and communicating with care teams may be helpful. As Angela explained last night that there are lots of practical tips and useful phrases for your armoury.
There is also a new post on the FEAST website about the critical role parents play in helping care teams to understand the well child, their passions, strengths and attributes : https://www.feast-ed.org/parents-as-critical-allies-on-the-eating-disorders-treatment-team/ . If you read this article it may give you more confidence in your role as parents, and that care teams really do value your input (as long as it is calm, constructive and definitely not too critical!)
Be curious not furious – I very quickly learned to say to the care team “help me understand the process” rather than “why aren’t you doing XY or Z?”
2. Focus on the person not the illness
We have a lovely expression:
“Give more attention to the behaviours you like and less attention to those you don’t”
This doesn’t mean ignore the illness and of course you will do everything in your power to get the right specialist help for your loved one. Once your loved one is medically safe make sure you focus more on what is right with them than what is wrong. Fear of the ED can lead families to stopping their loved one doing all the things they loved before ED came to visit. My son couldn’t play football when he was very ill but we could engage him in football related activities. His friends would bring him football magazines, we watched the whole of the 2002 Football World Cup as a family (and yes that was a great distraction from the endless meals). When he was allowed back to playing football we gave him responsibility – Sam you know what you need to do (which meant he had to eat a lot) to fuel your body. We were there in the background if and when he needed support.
So if your loved one was a ballet dancer can they do stretches to keep supple without getting caught up in compulsive exercise.
If your loved one loves horses can they still visit the horse and groom it or walk with it until they are strong enough to ride.
If your loved one is a competitive musician (singing, playing an instrument) can the grades and stressful performances be put on hold, whilst still allowing your loved one to participate in a joyful way – as we discussed last night much will depend on the views of the music teacher. A pressurised teacher will not be as helpful as a calm teacher who understands the fragilities that come with ED.
Carers are often confused when medication is prescribed for their young loved one. There is currently no medication specifically approved for use in anorexia, and only certain antidepressants have been found to be useful for sufferers of bulimia. However many different medications are often prescribed, usually because the patient is showing signs of comorbid anxiety, depression, obsessive compulsive traits, self harm, chronic lack of sleep and suicidal ideation as well as other comorbid mental health conditions for which medication has been found to be helpful. The attached capsule should help you to consider what information you need to reassure you that medication is a good idea. Remember that everytime a new medication is introduced, this is an experiment and must be monitored by qualified specialists.
Next carer support groups.
Chris and I have decided to run fortnightly groups through lockdown and so the next meetings will be March 1 (guest Dad and daughter talking about their strengthened bond through recovery) March 15 and March 29 from 7pm.
The Zoom link for all sessions will be :
Join Zoom Meeting
Meeting ID: 871 8813 0024
Please let me know if there are any specific topics or scenarios you would like us to discuss. If something is troubling you it is probably troubling lots of our other families as well.
Keep smiling. You are all amazing incredible people and these horrendous storms we are currently experiencing will pass with time and of course a great deal of patience. Fingers crossed the dashboard out of lockdown will help us all to visualise happier times ahead.