A Caring Mum, Not a Carer
There are 2 things guaranteed in life: birth and death. Anything between is a mixture of luck, providence, expectations, choices, genes and who you meet on the way.
As a parent, I reckon we all have preconceived (literally) ideas of how we might do parenting. Taking experiences from our upbringing and deciding to totally change direction from some and embrace others within those that have defined us from those formative years.
I was lucky enough to have a great childhood and adolescence; the worst that happened seemed to be trying to stop biting my nails! I wasn't too fond of boarding school as I was a homebody, loved being a nanny to 3 children in Switzerland, and then found my forte as a nurse. Alongside all of the career moves, being a mum was what I felt destined to be.
I’m the mum of 3 children, all now adults, but with that responsibility never did I expect to be an advocate, to personally challenge the government or to educate on a global platform. I certainly didn’t expect the title ‘carer’ to be anywhere in my credentials.
I remember the first time I was considered a "carer". I was washing my hands at a conference in London when someone first asked me "Are you a carer?" My response was "No, I’m a mum."
As their mum, through their childhood and adolescence, I was constantly, though subliminally, teaching the ways of life. Weaning, talking, potty training, first school, play date, first bus ride, first walk by yourself to school, first boy/girlfriend… maybe uni, maybe marriage; one day being a grandparent. My aim was, and remains, autonomy for them.
That day in London was my initiation to the club that I’d never wanted to belong to! Since that day, just months after my 15-year-old daughter had been diagnosed with Anorexia, I’ve tried to shake the title. It comes with a whole underlying tone and stigma.
When I speak about the impact Anorexia has had on my family, I often introduce that they’ve all been affected by anorexia, but only one of them has the diagnosis. As a family each one of you is affected; everything changes from the moment the illness starts in your loved one. Nothing is on the trajectory of those preconceived ideas once imagined as a parent. It’s likely very much the same for parents and families of someone diagnosed with cancer. How can life ever be the same again?
Through no fault of her own, and only out of the terrible misfortune of neural pathways travelling in a particular direction, coupled with a nutritional deficit, her genetic make-up and my daughters’ wonderful personality of perfectionism, attention to detail, competitiveness, an ability to think deeply and feel strongly; the Anorexia derailed her. All of my these wonderful attributes which are so applauded by society, became the things that actually precipitated the deep dive into a horrific illness. My soon-held belief was that those very strengths holding her in the grips of the illness would also be the strengths to get her out.
Just one day, a switch suddenly flicked. My daughter went from a "normal" (whatever that is) relationship with food, to suddenly a disordered one. I was so confused and shocked and became constantly on high alert. I found myself diving headlong into information gathering. Knowledge is strength in any situation, and so I learned as fast as I could. Being faced with possible death through malnutrition was a reality. No parent of sound mind would ever want their child to predecease them. There’s a feral response in the majority of parents to keep their offspring alive. Love is unending.
Let's take chemotherapy for example. When someone is faced with death, chemotherapy is met with unbridled optimism. A parent allows a treatment team to effectively poison their child, knowing full well the consequences of that treatment to be painful and terrifying, but as the only option to bring about life as an outcome. The parent is given support from family, friends and clinicians. They are encouraged to hold their child and love them, giving messages of hope and affirmations of love.
In the same way, and with a similarly horrific prescriptive formula, we needed to provide my daughter with painful and terrifying treatment. But in contrast, I found myself dishing up and serving the poison to my daughter, alone and in hostile territory yet still balancing the act of hope and love. After all, food is the medicine and the only evidence-based and successful treatment for any eating disorder.
I learned that the brain alone needs fats and sugars to survive. It’s the first organ to shut down, and the last to re-emerge in malnutrition. Without the brain fully functioning on the nourishment front: it’s not going to think or act as it should. Fact. In moments of fear, our brains our weird to fight, freeze, or fly and it didn't take me long to realise that food provoked all those responses in my daughter. But to me, it didn't make sense, why didn't she want to keep her organs functioning to stay alive?
We are 15 years down the road from diagnosis, and my daughter lives a wonderful life with her partner of nearly 8 years. She has a job she loves and is about to move abroad. Her knowledge is borne with experience of hell, and she knows that an energy deficit will, and does bring that terrible fear and voice of no reason back. The tide can turn very fast whilst navigating the roughest times, and energy input remains the anchor on those tides. For my daughter, working with a clinician to fill her toolbox with the nuts and bolts to battle within life and the distresses that may be submerged or above.
The tools are just for the person with the eating disorder, but there are also tools there for parents to learn to support them if that unruly, out of order voice is to return. It's important to know there is no blame, just as the fall into these illnesses are not a choice. However, the tools that I have learned are compassion, strength, love and constant hope, alongside a good dollop of ‘cruel to be kind’ boundaries. I asked my youngest son a few years ago as he sat on the brink of adulthood: how do you think I could’ve made the experience better for you? He sagely replied: I knew no different, so it seemed normal.
I wish that I’d never had to do any of the above, but I know that there’s a reason for everything in life, and our family has learned enormous strength through the worst adversity imaginable. We have been to hell, and have pulled our daughter and ourselves away from it. Life is being lived, death is not beckoning.
In those 15 years, I have connected with, supported, educated and advocated for and on behalf of other parents and carers. Campaigning at a government level for better outcomes for those with eating disorders, monetary input for better treatment treatment whilst holding clinicians and policymakers to account has become second nature.
Am I a carer? I care because I’m a mum, and never want others to go through that which we have.
My advice: Find peer support as parents and carers, there really is nothing like finding someone who speaks your ‘language’ without even trying.
F.E.A.S.T http://feast-ed.org kept me on track and my daughter alive.
Please visit their website and join https://www.feast-ed.org/feast-30-days/