A viral infection; sore throat, loss of appetite, fever and weakness. Nothing abnormal and something an incredibly fit and active 15 year old could and should have overcome easily. After 3 weeks of noticeable weight loss and decrease in appetite, we went to the doctor, who proceeded to give me antibiotics (for a viral infection, well done) and told me it was nothing to worry about.
Another 3 weeks passed. I was constantly nauseas, no appetite, stomach spasms every time I ate, bloating, reflux, satiety within a couple of bites, constant pain and inevitable weight loss. We went back to the doctor, who weighed me, told me I looked perfectly fine and to get over it and go eat a Big Mac. This carried on for 4 months. I was still at school and training competitively in dance, but becoming weaker, colder and frailer. I saw specialist after specialist who said the same thing,
‘There is nothing wrong with you. It is all in your head’
My mum finally got me into a paediatric doctor who took one look at my vitals and sent me straight to hospital to be put on a heart monitor and receive naso-gastric nutrition.
That first night, after the ordeal being told to swallow a tube with a wire inside, feel it blocking my throat and cutting the inside of my nose, I felt relief. I was actually sick – people finally believed me! I didn’t realise that this was when my ordeal would really begin.
I spent my 16th birthday being accused of being manipulative and in denial by psychiatrists and doctors. I prayed every test, every scan, every investigation would prove I wasn’t lying, that there was something wrong with me. But, every test came back negative and my integrity soon was worth nothing. I was put into treatment for an eating disorder, despite me telling them it was the fear of the pain food caused, not the food itself or my weight. I spent 2 years in and out of inpatient programs, in and out of the paediatric unit where I spent Christmas in ICU after my heart failed and my organs shut down.
By a miracle, my mother got me into see the most amazing doctor, Dr Sinclair Bode. This guy was my saving grace – he listened to me. Not my notes, but to me. He believed me and ran tests no ne had ever thought to run.
We discovered the nerve damage in my stomach, which means every time it expands, even with air or water, the pain is excruciating. We discovered I am coeliac, have fructose malabsorption, nutrient deficiencies, POTS, a wonky thyroid and sensitivities to pretty much everything.
I live in pain, but not in fear. I am not scared of my illness or what it will bring next, because I am ready and able to deal with it. I eat about the equivalent of what a picky toddler will eat and some days cannot even eat at all. I have never gone to dinner with my fiancee, I had to quit my job and passion because of my health.
I may not be well, but I’m doing well at coping with it!