Chronic Illness  
 June 21, 2016

Discovering my Spoonie Self

I don’t remember a time in my life when I was healthy. I was born with asthma (I spent a lot of time in oxygen tents), allergies (including anaphylaxis), and eczema (with sandpaper hands that meant no one wanted to hold my hand in gym class).

I thought this was the worst of it, but when I was fourteen years old I was diagnosed with acute lymphoblastic leukemia. I endured two and a half years of chemotherapy treatment (including more lumbar punctures, transfusions, and other various medical testing than I could say) and when that was done I thought that was the worst of it.

I finished high school and went off to university completing 3 degrees in 5 years while working various jobs to pay for tuition. This was my time! I spent a lot of time with friends and really enjoyed these years! The world was mine to conquer!

I began feeling pain in my hands when I was twenty two years old. I knew there was something going on but I figured I was okay and pushed through. I met with my family doctor when I noticed swelling in my hands and was referred to a rheumatologist for testing. I received a diagnosis of seronegative inflammatory arthritis and began treatment at twenty three years old.

After years of bouncing from one medication to another with no ease of pain I was diagnosed with fibromyalgia at twenty five years old.

More pills, more side effects, more fatigue, more symptoms.

I began my dream job working with children with special needs and thought life was going to be okay after all. I still had pain but it was nothing I couldn’t deal with. Life was looking good!
Until my back broke.

Several MRI’s, physiotherapy, and a meeting with a neurosurgeon after mind blowing pain resulted in spine surgery number one. I felt so much better after the first surgery and was ready to get back to my life, yet again.

As I was leaving my physician’s office with my “Back to Work” forms signed I was in a vehicle accident injuring my back yet again! It felt like a nightmare.

What it led me to, however, was the Spoonie Community.

I realized that I had things to say and as I was enlisting my cousin to help me set up a Tumblr blog we came across the term spoonie and immediately The Spoon Theory came rushing back into my mind. I remembered watching it on YouTube years ago and suddenly it meant so much more to me!

I began conversing with spoonies on Tumblr and Instagram and everything made so much more sense. My symptoms weren’t strange anymore. I learned how to advocate for myself and about different treatments that may be beneficial for me to try.

I was excited with this new found community and felt like I belonged somewhere, finally! I wasn’t alone!

I had a second spine surgery that was far less effective, unfortunately, and was then diagnosed with Degenerative Disc Disease. Unlike my other illnesses, this one has no effective treatment.

I also have a few other chronic conditions that impact me a little less severely, but now I have so much more hope and support in dealing with everything, thanks in large part to my support system, on and offline.

I used to feel so isolated in my own little medically impaired bubble, but now I realize that bubble is so much bigger than I could have imagined. I am not in this alone. I have thousands of friends around the world all fighting alongside me every day. I can use my voice to raise awareness for these invisible illnesses, and that’s what I intend to do!

This is my story. But it’s really every spoonie’s story. A story of when things went wrong and when we found our community, because finding this support system is the very best part of being chronically ill.

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