What Now? Raising Awareness for Invisible & Chronic Illnesses


Courtney Pest

Growing up Sick

I don't recall ever being healthy. Throughout my childhood I had food and environmental allergies (including an anaphylactic one to all nuts), asthma (I spent a fair amount of time in oxygen tents and on salbutamol machines), and eczema. These all seemed alright at the time; I stuck out in school a bit with my epi-pens and inhalers, but otherwise I lived a pretty normal life.

And Then, Cancer

As soon as I started getting into the swing of things, at age 14 I was diagnosed with Acute Lymphoblastic Leukemia. I was considered high risk because I was a little too old to have "childhood cancer" but as an egocentric teenager, the thought of dying never really crossed my mind. I was way more upset about missing my first year of high school while all of my friends were sharing that experience without me. Lonliness hurt more than the 70+ lumbar punctures I endured. Before you ask, yes I lost my hair, yes it sucked. But after nearly 3 years of chemotherapy, I was ready to get back to being a "normal" teenager again!

And Then....

The next few years actually rocked! I graduated high school with my friends, which was all thanks to my mom, pushing the school board for support and some amazing educators who came to my house and taught me the curriculum so I could complete enough to pass! I went on to University and earned a Bachelors Degree in Psychology, a Bachelors Degree in Education, a Diploma in Early Childhood Education, and a Post Graduate Certificate in Autism and Behavioural Sciences! Phew! That was a LOT but it was amazingly satisfying and exciting!

I married my best friend in 2010 and was immediately diagnosed with seronegative rheumatoid arthritis and osteoarthritis. I began a few treatment protocols but was still in a great amount of pain. After a quick assessment I was also diagnosed with Fibromyalgia. At the time I had no idea what it was or what that diagnosis meant for me. Believe me, I understand now! This is a diagnosis that people are quick to dismiss as fake or unimportant, but for the people suffering, it is painfully real.

And then, my spine

The first time I remember feeling sciatic pain I was 21. It would come on strong but leave after a week or so. As the years went on the pain increased as well as the length of the flare. When I was 24 the pain became immensley worse. Thankfully, I had an awesome rheumatologist at the time to consult about this as the prior flares I just suffered in silence. She ordered an MRI and I just went about my business as usual. During this time I was working as an Early Childhood Educator in a Child Care setting. This was not a great career choice for chronic pain.

That flare went away and about a year later, when I was working as an Educational Assistant in a school with children who are medically fragile, the pain hit harder than ever. This was the first time I actually took time off work because I just could not function. To this day that pain still haunts me. I finally saw the results of the MRI and as it turned out, I had a completely ruptured disc in my lumbar spine! Since then, I have had two spine surgeries. I am currently waiting on a spinal fusion.

What Now?

The last 3 years have been a miserable blur. I am still in intense pain, and the only relief I have experienced was after the first surgery, and it was short lived.
This is not the life I had envisioned for myself, and certainly not the life my husband had envisioned for us.

Travelling and having children are dreams we both had that are either on the back burner or, we fear, will never happen. The upside to this mess? My husband and I are a team. We are partners in every extent of the word. 

I have met some amazing people because of this chronic illness journey. I have learned more about myself and my body than I could have imagined. I have more compassion and sensitivity to other people's pain than I could have expected.

I raise awareness for invisible and chronic illnesses because I know how it feels to be judged or disbelieved. I support as many people online and in person as I can. I try to find the good in this story and life of mine, and I think I'm finding more every day. I am strong, even if my body is weak. And that is a lesson I am thankful for having learned.


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