New Beginnings

samantha of chronic ill tales

Chronicill Cynic's Story


Age: 25-36

A little bit about my journey:

My Diagnosis

Coeliac, hypothyroidism, EDNOS, POTS, gastro nerve damage, fructose intolerance, nutrient malabsorption, EMF sensitivities, chronic migraines, fibromyalgia

Time to Get Diagnosed

5 years

Year I was Diagnosed

2010- wrong diagnosis of anorexia 2013-2015- multiple correct diagnosises of coeliac and food allergies

Sending Love to

Dr Sinclair Bode

Hospital I'd Recommend

None! no good experience with ANY

This is my story:

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!

Let’s play 20 questions:

The song that keeps me going is:
Firework, Katy Perry
I never leave home without my:
Anti nausea meds!
My go-to feel better movie is: 
If I was in the hospital, the celebrity I would most love to visit me would be:
Emma Watson or Lili Reinhart
When I need to relax, I:
Go for a walk
My favorite food is:
no food!!
The quote that keeps me going is:
What the Caterpillar calls the end, the rest of the world calls a butterfly
When I need a laugh, I:
Look up silly cat videos!
Meet my pets (or favorite stuffed animal):
Zibu, my gorgeous kitty
My hero is:
My mum and my grandpa
When I’m having a down day I binge watch:
How I met your mother
My favorite book to get lost in is:
I want to be best friends with:
@awaytohealthy or @jessicaolie
The thing I’m most proud of:
I moved across the other side of the world by myself to pursue my passion
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
I met my fiancee and he is the best thing to happen to me
The most hilarious thing that has happened to me is:
too many to count - I am far too clumsy for words!
It really means a lot when someone does this:
Doesnt ask me "How are you?", instead asking "How many spoons do you have left today?"
My favorite social media account to follow is:
The advice I would give to myself back at the beginning of this journey would be:
Believe in yourself always. Screw what everyone else says or thinks. They dont know you or how you feel
Words of encouragement that I’d give to my fellow warriors are
One spoon at a time. YOU GOT THIS
Follow my journey:

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