Diagnosis day is an important day for anyone with a chronic illness. I refer to mine as my D Day. The day that changed my life and made me a spoonie.
Chances are if you know what a spoonie is, either you or someone in your life is one. A spoonie is a person living with one or more chronic illness(es). The name references The Spoon Theory by Christine Miserandino. Within this theory she relates spoons to energy/ability to complete every day task. It’s a comparison to how people normally function versus how someone with a chronic illness functions.
I was six years old when I was diagnosed with my first chronic illness: psoriasis. It wasn’t a very pivotal moment in my life to be honest. My main thoughts were “this is annoying” and “wow this shampoo smells gross”. I know, complex thoughts for a six year old. But that was kind of the beginning of me becoming a spoonie, even though I didn’t realize it.
I lived my life as a relatively healthy person until I was 17 years old. I was always a little pudgy but active and healthy. When I was in elementary school I was a regular swimmer. Even did winter swim for a few years. In middle school I started dancing and that passion was my focus for a long time. I was never in perfect shape, but I was strong and rarely got sick. (Though I did have an occasional mild outbreak of psoriasis.) At the beginning of my senior year of high school I got injured and that
was the beginning of my health going downhill for many years to come. Within a year of my injury I had given up dancing, gained weight and acquired two chronic illnesses. Acid reflux (or GERD) and chronic costochondritis. A few years later the chronic migraines began. Fast forward another handful of year and I was 32 and sitting in the rheumatologists office being told that I had psoriatic arthritis. I call that day my D-Day: Diagnosis Day.
Some people may think that calling it D Day is a little insensitive. I certainly don’t want to discount what war does to people, countries, etc. It’s a very serious matter and I do not take it lightly. But to me, chronic illness is my war. My D-Day changed everything. Psoriatic arthritis is my every day fight. With the additional diagnosis of psoriatic arthritis, chronic illness has now grown to affect almost every area of my body and my life. Even my dog’s life! And while my condition may fluctuate over time, it will always be there. That’s what it is to be diagnosed with a chronic illness: it’s a life sentence. I will live the rest of my life with this pain and this illness.
I’m not trying to be dramatic and fatalistic. While some days I certainly go into that deep dark hole, most days I’m actually very grateful and feel very lucky. Most of my conditions are relatively mild. The psoriatic arthritis is the first to really require changes in my life that feel like sacrifice. (Besides giving up red wine because of the migraines… that one hurt.) But even with those sacrifices, I know I’m lucky. I’m honestly even lucky I got a diagnosis. Some people with chronic illnesses, especially the invisible chronic illness, can spend years waiting for a diagnosis. Mine only took a few months. Having a name to your fight makes all the difference.
But here’s the honest truth: even with luck, and the copious amounts of research I did, and a very understanding support system, I was not prepared. I don’t think there is anything I could have done to be prepared for this new life. That day, my life changed. Some people may think it’s small, but it’s not. It’s like someone tossing your life about like you would a snow globe to make it snow.
That’s the journey that I’m here to share. The good, the bad, and the ugly. The truth; often laced with tons of sarcasm.