Mental health campaigner, Emily Nuttall, shares her lived experience of an eating disorder in a series of guest blogs. Her first entry explores her birth story and diagnosis of cerebral palsy.
Our guest blogger shares some personal accounts which some may find difficult to read, particularly if they’ve experienced trauma in the family and self-harm. Please go gently.
I could never have imagined on Monday 12th September 2022 that I’d be sat at my kitchen table writing a blog. Sharing my story on my recovery learnings, neurodivergence, autism, physical disabilities, trauma, abuse and special needs alongside a struggle with anorexia. All of which, I am finally coming through the other side after 14 years of struggling. That light at the end of the tunnel finally feels in sight and it feels so beautiful.
“Being different means we succeed together, we are all worthy, we are all loved, and we are all enough just as we are.”
“Being different means we succeed together, we are all worthy, we are all loved, and we are all enough just as we are”. How I wish someone had told me that 21 years ago.
When I arrived into this world, I had other ideas than my mum did. I wasn’t going to be a patient baby and wait happily inside my mum’s warm, safe tummy until my due date. Instead, at 24 weeks into my mother’s pregnancy, my mother’s waters broke, I arrived 8 weeks early, weighing in at only 4lbs 4oz.
After my early entrance into this world, the professionals decided I needed to spend a short amount of time in an incubator in the special care baby unit. What an adventure this was, to lie in a rectangular box with machines beeping and wires all over me. Totally unaware of what was actually happening, I had a great time in the incubator. I was an angel for the midwives, liking all the drama. But on the other side of the incubator, my mum, dad and other family members were filled with anxiety. After a period of time, I was strong enough and healthy enough to come out of the special care baby unit.
“By the age of three, I became aware of what was happening and was fascinated by it.”
If you are prepared enough for your baby’s arrival, you may have read all kinds of books to try and help understand what to expect over the many months and years ahead. You may have come to understand what age your baby will reach its key milestones of sitting up unaided, rolling around, crawling and finally walking and talking.
But me being the stubborn, mischievous baby that I was, I didn’t want to make life easy for my mum and dad I was not meeting these milestones as I should have been.
After months of a range of different tests, doctors and surgeon appointments, X-rays and scans, I was diagnosed with cerebral palsy at 12 months old.
If you didn’t know – Cerebral palsy is a condition in which physical movement and development are negatively affected as a result of damage to the developing brain, during pregnancy or just after birth.
By the age of three, I became aware of what was happening and was fascinated by it. I watched my mum and my family put intriguing splints on my legs, followed by funny looking boots, then giving me bright yellow coloured children’s walking sticks. Having found my new found freedom meant I became a tiny tearaway and always up to mischief.
September 11th 2001, breaking news hit us of the 9/11 terror attack in America. Whilst thousands of people stayed glued to their television screens, I was being prepared for one of the most terrifying days of my life: operation day. I brought my favourite teddy bear, it was pink, soft and fluffy, and it came to all of my treatments with me. But I was still afraid.
“To admit to pain and fear would mean that I was weak, or even worse ungrateful.”
As I was getting prepared for surgery, I acted strong, brave and confident for my family. Daddy told me I was his brave little girl. I watched my surgeon and all of the other professionals surrounding my bed, with their surgical masks, aprons and gloves. They talked through everything with me, reassuring me that I was safe and that it would all be okay. After this brief discussion, they took my family aside to go through the final pieces of paperwork.
Suddenly the strong, determined, confident, smiling nine-year-old with all the confidence in the world let down her brave face. Fear finally consumed her, me. In pain. I was scared. I felt I couldn’t face what was ahead of me. Sobbing into my pink teddy bear, I felt confused and lost.
To admit to pain and fear would mean that I was weak, or even worse ungrateful. After all, I was being offered life-changing surgery, which I knew would ultimately improve my life. So, on operation day, I learnt how to put on my mask of confidence.
In November 2001, I went back to school, it was a bright autumn day, leaves were falling from the trees onto the school playing fields. I was pushing myself around in my wheelchair with my bright pink plaster cast visible. I had been fortunate enough that my cerebral palsy had not affected my intellectual development, which I was grateful for. This meant I could attend mainstream school with extra support. On this day, some boys from my year group came up to me. One of them screamed at me that I was stupid, ugly and fat. He pushed me, while the other boys jeered and encouraged him.
“Facing cerebral palsy has thrown all kinds of hurdles at me.”
I felt rejected, judged, isolated and lost. Though, I couldn’t show it. I didn’t want to be a further target. To feel safe and protected, I kept my mask of confidence close to me. I wanted to feel accepted and at the end of the day, I was still Emily.
I knew I couldn’t let fear defeat me, so I had to rise above them. I spoke to my teachers, and with some extra help and support, the bullying stopped for a good period of time.
I suddenly lost sight in my left eye in 2005 and in 2010 I was diagnosed with scoliosis, I had an autism diagnosis in 2017 followed by spondylolithesis and spine degeneration between 2019-2022 as a result of anorexia.
These physical challenges and trying to find my place of belonging in the world brought much uncertainty into my life and I felt fearful, lonely and isolated. Though, with my mask of confidence, I was safe. Behind my mask, I didn’t let other people’s judgements affect me. I still face many challenges with my cerebral palsy but I realise that being fearful is okay. I am in a place now where I do not let fear overpower me. I face every life challenge with confidence, determination, and strength and hope because “when you fear your struggles, your struggles consume you. When you face your struggles, you overcome them.”
For the last 14 years of my life I have been in mental health and eating disorder treatment. In the last few years, in a learning disability and autism eating disorder specialist service.
“I have been fighting only what I can describe as a silent battle with my mental health.”
Wearing my mask of “I’m fine” has blocked out fear, trauma, flashbacks, health challenges, voices, devastating life events. It has guarded me from pain, protected me from people’s judgements and actions. It has given me control to feel numb and has aided me to disconnect and forget. Yet still, I act as a strong, smiling, determined, thriving, giving, achieving Emily for everyone around me in my life.
Emily is a motivational disability, children, young people, families and homelessness campaigner and advisor with Action for Children. Emily is also an incredible mental health and eating disorder campaigner, champion and speaker, disability sports coach with Guernsey Mobility Let’s Go, MOE foundation coach, an entrepreneur and inspirational co-author for the books. She is an active fundraiser, campaigner, speaker and media volunteer for Beat, the UK eating disorders charity.
Emily is all about empowering people and inspiring long lasting change.