From post-traumatic stress to post-traumatic growth

From post-traumatic stress to post-traumatic growth

My son Joe developed anorexia at the age of 12 in 2002. He lost 25 per cent of his body weight in 12 weeks. Since that torrid time, I have known that caring for a loved one with an eating disorder is exhausting, distressing, disorientating, excruciating and terrifying.

As with many families,  Joe’s illness came out of the blue. Our gorgeous, clever, talented, cheeky boy turned into an unknown phenomenon in front of our eyes. He became angry, sad, withdrawn, emotionally volatile, and seemingly impossible to reach. Physically disappearing in front of our eyes. Dangerously ill. We thought on that night in A&E in March 2002 that we would have to say goodbye.

Roll on to 2024 and our gorgeous boy is a 34-year-old vibrant young man with a passion for life, a bright future ahead, and empathy and compassion for anyone in his circle of family and friends who might be struggling. I am so proud of him.

What saved Joe’s life?

Four factors saved Joe’s life:
·      Four and a half months in an inpatient general adolescent unit with a holistic approach including refeeding, group therapy, art therapy, family therapy and more.
·      Our family as a whole learning to adjust our responses to his illness, to smile more, have more fun and support him to visualise the possibility he could put this all behind him.
·      His courage and determination to stand up to the bully in his head (Rex) and learn how to quieten him.
·      Community support that wasn’t judgemental, referred to us all by name (not mum, dad, patient), trusted us that we knew our son best and believed that our input was invaluable.

By the time Joe was 14, we could start to relax and believe that full recovery was an option. We were told so many times it wasn’t.

Where does post-traumatic growth feature in this story?

Post-traumatic growth was first described in the 1990s. It is the positive psychological change that some people experience after a life crisis or traumatic event. Post-traumatic growth doesn’t deny deep distress but rather posits that adversity can unintentionally yield changes in understanding oneself, others, and the world.

This is true for my son, and I have witnessed it in many people that I have seen emerge from their eating disorders and related distress. My son emerged as a more resilient and compassionate young man. This was also challenging in a positive way for him although, for me as his mum, I took time to adjust as he had always been a pleaser before his illness.

Our first experience of this “growth” came quickly after Joe was discharged from the inpatient unit. He was desperate to play football with his pals and wanted to go to a week-long local football camp which entailed five hours of football each day. I was desperately worried it might be a trigger for his compulsive exercise to return. The inpatient psychiatrist agreed that it was too risky. The outpatient psychiatrist felt differently.
“Jenny, you know your son best, you know what to look out for. You should let him play football.” So, we took that reasonable risk, and this meant we had to trust each other and have a difficult conversation in advance. Joe was 12 at the time.

Me: “Darling, we really want you to play football next week. (But) We need to discuss what this entails.”
My son: “Mum you worry too much. I know I need to eat more.”
Me: “Of course, I worry darling. I don’t want you to need readmission to the hospital. I am here to support you.”
My son: “Are you going to let me go?”
Me: “Well, let’s be a bit more specific about fuelling your body for a week of football.”

Through this conversation, Joe could verbalise and visualise that he would need to eat more than his existing meal plan and about twice as much as his friends. He was able to do that and enjoyed the week. My heart started to soar to see such joy.

A good first step towards post-traumatic growth was handing over responsibility to my son to feed himself appropriately. Always, with our help and support in the background.

For me, the ongoing process was life-changing. I gave up my job as a city stockbroker firstly to support my son through his return to school and navigate the later stages of recovery. He agreed that we should share our story and the result was my first book Boys Get Anorexia Too, published in 2006.  Joe said at the time, “If one other family benefits from reading our story it will all have been worthwhile.”

My next step was to retrain with the team at the Maudsley Hospital in London. It so happened that Prof. Janet Treasure and her team were researching an approach that would focus on empowering families to support their loved ones. A big part of the research was to explore whether nonclinical lived experience carers could be trained to deliver the model in the community. The resounding answer was “Yes”, and I was one of the first new facilitators to deliver the model in the UK.

After more than five years of delivering the model to families in my local community, Prof. Treasure invited me to be the lead author of a training manual aimed at clinicians, that would also be useful for families. This led to my first website – created by a grateful dad who had attended the workshops when supporting his daughter. All the worksheets from the manual are freely downloadable from the website and videos and podcasts accompany all the core skills. This makes the model truly accessible to anyone in the world. Something that Prof. Treasure and I are proud of.

Moving onto today – I have recently trained 16 new facilitators, together with my New Maudsley colleague Pam, and these facilitators are delivering workshops via Zoom for UK-based families. We aim to train up to 100 new facilitators over the next few years. During the Covid lockdown, I trained 60 doctors in Brazil – online with simultaneous translation into Brazilian Portuguese, and all the leading teaching hospitals in Sao Paolo now run regular skills workshops for families. I also deliver regular training sessions for clinicians with the aim that they can take the skills back to their services and use the techniques with each other, their patients, and their families.

Working with carers is empowering and energising, humbling and exciting

Joe is proud of my work in the eating disorder field, a role that started with his rapid decline into anorexia. This is what post-traumatic growth can look like.
Recently someone asked how I maintain my energy levels and passion. It is simple. Bringing carers together in a collective group, whether it be a carer support group chat or an intensive series of workshops, is empowering and energising.
Carers’ ability to show their vulnerability in this safe, confidential, non-judgmental space, and their willingness to share experiences and ideas, is humbling and exciting. Carers come to these sessions because they are in the thick of it and sometimes they cannot see the light at the end of the tunnel. The light is there, and if these sessions can give families even a tiny glimpse of that light, then I have achieved my purpose.
My wish is for every family affected by eating disorders to know:

“You are not alone. Look forward not back and never give up HOPE.”

Click on this link to learn more about the New Maudsley model and carer skills workshops.