I am sure all of you who attended the incredible meeting on Monday night will want to join me in thanking Amelia and Sarah for sharing their story with us. Amelia, age 16, is the youngest person in the history of our group to have shared their recovery story with us. Many of you are caring for teenagers struggling with eating disorders and I am sure Amelia’s honest and heartfelt account of what worked for her (and what didn’t) will have given you all much food for thought. Sarah (age undisclosed, but almost certainly feeling older and wiser having travelled this journey with her daughter) also talked so openly and with a great deal of humility. Parents don’t always get it right and it is the ability to reflect on mistakes, adapt, be flexible, have the patience of a saint and role model self care that are key to staying connected with a loved one struggling with an eating disorder.
Within this email I just want to pull out some highlights and key messages from Amelia and Sarah:
- Weight restoration does not equate to recovery. I desperately wanted to avoid the hospital so I would be compliant and gain weight so that FEDS (our ED specialist team) would discharge me, but I was not at all recovered. Also it is not OK to stay underweight
- Liquid supplements such as Fortisip and Ensure really helped me to gain weight – I highly recommend using them within re feeding
I definitely felt I had two very distinct personalities. My ED tried to take my identity. I really needed my parents to remind me that I had my own identity as Amelia
- Punishing me (FEDS took away school, sport, everything) so all there was left was the ED. That did not work.
- Sanctioning/ suspending me (Intensive Treatment Programme at the Maudsley) did work because there was so much about ITP that I wanted to be part of (feeling of peer support – all the staff were young; distractions such as playing cards, music, teen talk, hugs from one member of staff in particular). It was my decision – comply and get all those benefits, or don’t comply and be stuck back at home with nothing but a meal plan
- ITP showed me there was so much more to life than the ED. My life stuck with ED was hell, ITP taught me there was so much to get up for every day.
- We quickly learnt that a mix of our encouragement, gentle cajoling, unconditional love (all things we learnt on the New Maudsley courses) was the best formula to stay connected with Amelia and to support her
- An ED is not a choice – it happens and we needed to support Amelia, not fight endless battles with the ED that we couldn’t win
I begged and cried and cajoled and never gave up in my quest to get the right support for Amelia.
- Medication can be so helpful (needs to be properly prescribed and supervised)
- Having the ECHO coach from Beat was so helpful and I have raised money for Beat so they can extend this programme Echo Peer Coaching – Beat (beateatingdisorders.org.uk)
- I regret hiding away from all my friends – I became a recluse. Keep your door open. You need others around you.
- I am not THE ONLY WARRIOR – I am a warrior in the sense that I will do anything in my powers to support my daughter whilst also looking after myself and role modelling self care. It is so important
- Both Sarah and Amelia have kindly offered to talk further with any families who would like to explore any of these themes further. If you email me then I can pass on any follow up requests.
Thank you again to Sarah and Amelia for such an enlightening evening. Our key message is to remember to focus on your loved one’s positive attributes, drip feed affirmations (you are strong, courageous, determined, tenacious, loving, caring, incredible, amazing……..) whilst also working hard in the background to secure the best possible expert support for your loved one in their battle with ED.
You might also be interested to see our general guidelines for carers at Golden Guidelines for Carers – newmaudsleycarers-kent
Our next meeting is on November 1st and our guest Natalie will talk to us about her battles with eating disorders and addiction, and how she has used her own experiences to now support others battling addiction related issues. I will send more details nearer the time.
Meanwhile don’t forget that organisations such as Beat, FEAST and AnorexiaBulimiaCare all have a range of support services for carers and families.
Jenny & Chris