A few weeks ago, I had the privilege of speaking to a group of very brave individuals. They were all connected by one common thread. Each of their lives were being affected by an eating disorder. They had come together in the hope of gaining a little more insight into why their loved one had been taken over by some sort of hideous monster. They were feeling lost, alone, frightened, guilty, angry, hopeless and every other emotion possible.
As I was driving down from London I kept wondering what it is they would benefit from hearing. It was my first public speaking event and I was apprehensive about sitting in front of a group of strangers who would be focusing on me for 90 minutes. The nerves were of course all self-consuming. Would I be able to articulate my story? Would I have any value? Would they question my recovery and judge my weight? I had to literally shut my head up and tell it to stop being so self-obsessed. The evening was not about me – it was about them, and I was there to give an honest account of my journey to recovery. Despite my perfectionist tendencies I decided not to rehearse my account in advance, but to ‘go with the flow’. As the room filled up, my nerves left me and were replaced with a warm fuzzy feeling.
I am well practiced at telling my story, but I have never had the opportunity to deliver it from the perspective of someone in recovery. Previously it has always been from the vantage point of needing help, so it was a proud moment for me. I used the whole 90 mins and could have continued for longer! Whilst it was a humbling experience to share my journey, it was the questions that followed that really struck a chord.
Listening to each audience member has furthered to help me understand the consequences of my own eating disorder. Throughout my illness I was totally consumed by the nightmare I was living. So much so that I barely gave a second thought to the distress I was causing my family and friends. I couldn’t – there was no room for anyone else. An eating disorder isn’t satisfied with destroying one life – it’s like a tornado – it shatters everything in its path.
The one question that everyone wanted to know was how could they best support their loved one. What was it they could do to stop the eating disorder? I wished I could have given them a simple solution, but the one thing an eating disorder isn’t is simple. They are complex, and as a result are unique to the individual. There is no one size fits all and consequently no one answer. What helped me to recover was consistency, love, kindness and boundaries. Even when I was kicking and screaming I needed people around me who could strengthen my healthy self and weaken my eating disordered self. I needed an army who would not give in or condone the actions of my eating disorder.
Since launching Jiggsy, I have heard from many parents and carers who have expressed their sense of uselessness and guilt that they couldn’t stop their child from developing an eating disorder. The reality is though they couldn’t. Eating disorders evolve for multiple reasons. It’s too simplistic to suggest that it’s a diet gone wrong, that they wanted to look like a supermodel, or even that a traumatic event happened in their life. I believe that someone who develops an eating disorder has a genetic predisposition. There are certain character traits that are common within patients, and I certainly display them to this day. My desire to be a perfectionist, my sensitivity to feelings and emotions and my drive to be the best. Combine these with a culture obsessed with body image – throw in a physcological trauma, and you have the ‘perfect storm’ for an eating disorder. My character traits will always be the core of my being, and when used in a healthy manner are great assets. Being in recovery for me is not about destroying my sensitivity or even my perfectionism. I honour every bit of my soul these days. For me it’s about learning the tools to direct my character traits and behaviours in an appropriate way. I hope an understanding of this may help a parent to relinquish some of the guilt they may feel.
Speaking to the group gave me even more determination and inspiration for Jiggsy to not only be a place for sufferers or those in recovery, but also a safe place for carers and parents. My own family have said that they felt incredibly alone with my eating disorder. They didn’t know anyone else going through it, and needed connection as much as I did. No one knows what you are feeling or thinking unless you have, or are walking the same path.
It was an absolute honour to be in a room filled with an abundance of love and warmth. Despite feelings of desperation and hopelessness, there was a wonderful energy that radiated throughout every individual – born from a united desire to help their loved one see the light once more.
I would like to personally thank Jenny Langley who runs the ‘Tonbridge Eating Disorders Support Group For Carers’ for inviting me to share my story and to everyone who came and listened to me.