“I thought the day would come when I would just turn a corner and then, somehow, I’d have my life back. Unfortunately, my body didn’t always agree with my mind.”
PATHOGEN: E. coli O157, HUS | SOURCE: Meat, Establishment Serving Food
If you had told me five years ago that I’d have two life-threatening illnesses before I was 18, I probably would have laughed. I was just at the beginning of my teen years, and I was in optimal health! I swam competitively in my squad and was a vital member of the team. I enjoyed CrossFit for the way it made me feel – unstoppable and only getting better. I ran marathons with my mum – we ran good races and had a great time. All in all, I was a pretty typical teenager – I had my frustrations and drama, but my parents had raised me to care about my health and to care about other people
In the new year (2018), at the age of 14, I spent 16 days in hospital diagnosed with E. coli O157:H7, and subsequently, Haemolytic Uraemic Syndrome (HUS). In fact, before the year had passed I’d had a nasal feeding tube, four blood transfusions, two surgeries and been hooked up to dialysis. I battled tremendous weight loss, horrendous stomach cramps, constant vomiting and bloody diarrhoea. I missed 74 days of year nine. Seventy-four!! When my symptoms got unmanageable I had to quit doing the things I loved. Being active, I thought I knew what it was to be exhausted and barely able to function. I soon learned that I really had no idea! When you’ve got near-constant stomach pain and days and nights of sleeplessness you quickly find out what you’re made of.
I started telling myself that if I could just take it a day at a time, I could start eating better and exercising and get my good health back. I’d had good habits, but now I’d have to get even more disciplined. This experience was nothing more than a problem to be solved and I was smart enough to solve it. I thought the day would come when I would just turn a corner and then, somehow, I’d have my life back. Unfortunately, my body didn’t always agree with my mind.
With every trip to hospital, there was something new to face. For some unknown reason, I had developed Postural Tachycardia Syndrome (POTS), which affects my blood flow. The symptoms tend to come out of nowhere, like when I stand up from a reclining position. The HUS had permanently damaged my kidneys, which in turn brought a cascade of other problems. I have Functional Neurological Disorder (FND) which is basically a problem with my nervous system that causes paralysis, tremors, weakness and abnormal movements, among other things. Then there’s the Micturition Syncope, which causes me to faint after a massive wee and a bowel movement. It pretty much goes without saying that I’ve been diagnosed with Irritable Bowel Syndrome (IBS) and Gastroparesis (GP). Through all these doctors’ appointments, hospital stays, and days in limbo there has always been ongoing chronic pain and, because of the IBS, an increased sensitivity to pain in my internal organs. Officially, that’s called Visceral Hypersensitivity. If you look these syndromes and disorders up online somewhere it usually says something like, “it may impact the quality of life”. I’m 18 years old, and for the last 4 years of my life I’ve been a survivor of E. coli O157 and HUS and I can tell you, beyond a shadow of doubt, that it definitely impacts the quality of my life!
So … I had to find some new hobbies. I used to hate reading (probably because I associated it with school), but since graduating I have come to really love it. When your medical issues keep you feeling tied down and you’re not allowed to go anywhere, I’ve found a book can take you far, far away. I have always loved baking, so it’s not really a new hobby! But I have dedicated a little more time and energy to it. Cakes and cupcakes, muffins and biscuits – you name it and I’ve baked it! When I was much younger I liked to build things with LEGO and create beautiful works of art with Diamond Dotz, but now that I am older I LOVE playing with them even more. When you have a mind like mine – that’s constantly on the go, LEGOs are a great way to spend the time. I think about what I want to build and then am challenged to make it look the way I saw it in my mind. I’ve always been a problem-solver, even before I got sick. Just because I’m physically less active doesn’t mean my brain is less active. If anything, it’s working even harder now because I’m not only looking for solutions for myself, I am also seeking solutions for other people.
People have asked me, “Dani, what keeps you going?”
Here’s what keeps me moving forward – my family, my friends and my online supporters!
In 2021, I started making videos on TikTok about living life with chronic illness. Taking stock of my life, I often felt very alone as I was coping with all the physical, and emotional things I’ve been dealing with since I was sick from E. coli O157 and HUS. Even though I knew otherwise – that I wasn’t the only one out here dealing with these kinds of things – there were times when I was really struggling.
I heard someone say, “When life gives you lemons make lemonade” and I kind of laughed to myself that they didn’t know the half of it. Then I heard myself say, “They don’t know the half of it.” And there it was – the idea. How are they going to understand unless I help them understand?
So I started where I was – with a simple video that asks the question Why do you get upset when people say, ‘But you don’t look sick’? And I answered that question. From there it just took off. In August 2021, I started my Instagram page @chronically_dani_ where I post my videos from TikTok as well as other things related to living with chronic illness. And the thing that’s been really amazing is how people have reached out to me with encouragement, friendship, questions and solutions they’ve found in their various journeys.
Do I still have down days? Yeah. Definitely. Do I tell people they’ve got to be food safe and wash their hands or check the temperature of their meat with a thermometer? Yeah, sure. The thing I hear myself saying the most though is this: chronic pain is real. And things like silencing it or shaming it or even ignoring it isn’t going to make it go away. If you know someone in your life who is dealing with chronic pain, I think one of the most important things you can do is come alongside them. Just “be” for them and they’ll “be” for themselves too.