Hi everyone,

We had another very busy session and it was lovely to welcome several new families. Now that we are regularly seeing in excess of 30 families attending we decided to slightly change the format:

Rather than asking everyone to introduce themselves (which when you have more than 25 is very time consuming and also distressing to hear so many difficult situations) we just invited the new people to introduce themselves – everyone else could just say who they are caring for in the chat. Then I presented for about 20 minutes on a theme – on this occasion it was the window of tolerance and distress tolerance for carers. Then we gave the families a choice of breakout rooms so that carers of adult patients, perhaps living independently go with Chris, and parents of children/ adolescent patients come to me to further discuss the topic, share ideas etc.  Of course carers can choose whichever room they want to.  Then we all came back together at the end. The format worked well so we will continue with this format whilst demand for these session is so high.

Our main topic was around the carers emotional journey and how carers can recognise and validate these emotions (using the technique ALVS) and think about ways to self soothe.

Here is a link to a short powerpoint around the window of tolerance and a Carer distress tolerance and emotions workbook with two very common examples that we reflected on in the session:

I burst into tears when my daughter told me I am useless and she hates me

I am really distressed at the lack of time I have available for Edi’s younger siblings

Here are some further resources around these two topics:

We also talked about the power of the eating disorder voice and I recommend you watch Laura Hill’s Ted talk – eating disorders from the inside out if you haven’t already:
Eating Disorders from the Inside Out: Laura Hill at TEDxColumbus. – YouTube

One of our carers also recommended this TED talk by a young lady giving powerful insights into her recovery:
After anorexia: Life’s too short to weigh your cornflakes | Catherine Pawley | TEDxLeamingtonSpa – YouTube

We also discussed how to cope when Edi says “I can’t eat”. Eva Musby has much to say on this subject and one of her videos that is particularly useful is:
Stuck & not eating! Anorexia/ eating disorders: parents’ meal support tips – YouTube

Her other resources can be found at Anorexia and other eating disorders: how to help your child eat well and be well. Book, videos, coaching/counselling. (anorexiafamily.com)

If you are new to the world of ED you might like to sign up for FIRST30Days:

It’s For All Parents! – FEAST (feast-ed.org)which might provide you with some comfort and useful resources if you are waiting to get on a carer course and/or waiting for your child to have an ED assessment

Then dates for next support groups:

  • Monday May 10th
  • Monday May 24th
  • Monday June 21st
  • Monday July 5th
  • Monday July 26th
  • Monday August 23rd
  • Monday September 20th

This week someone asked me how I keep my energy levels and passion going. It is very simple. Bringing carers together in a collective group like this is so empowering and energising. Your ability to show your vulnerability in this safe space, and your ability to share experiences and ideas is both humbling and truly exciting. You are coming to these sessions because you are in the thick of it and sometimes it is impossible to see the light at the end of the tunnel. The light is there, and if these sessions can even give you a tiny glimpse of that light from time to time, then Chris and I have achieved our purpose. You are not alone.

Look forward not back and never give up HOPE.

Share This