The story of Alicia
In 2016-2017, I was diagnosed with Chiari Malformation Type 1 and Syringomyelia. It was a long road to get there, as my previous doctor had misdiagnosed me with bipolar disorder. Every time I complained about the pain and asked for an MRI, hospitals would brush me off, saying some people just experience unexplainable chronic pain.
But one incident changed everything. I fell and lost consciousness, and luckily, my dad found me just in time. I remember him asking if I was okay, and even though I wasn’t, I said I was fine because I didn’t want to worry him. Spoiler alert: I was NOT good.
Then, I decided to seek help from a new family doctor who actually listened to me. He sent me for a CT scan, but not an MRI. Determined to be treated without the stigma of mental illness, I visited a walk-in clinic and told them I didn’t have a history of mental illness. This decision led me to the answers I had been desperately searching for.
I did the right thing and confessed to my doctor about what I had done. I apologized and asked for a referral to a place called OneLink. Through video calls with a psychiatrist and a nurse (even before COVID-19), I learned that it wasn’t bipolar, but I had actually been living with a panic disorder alongside my Rare Diseases my whole life.
At one point, I needed the help of a speech pathologist to teach me how to restrengthen my hyoid bone (shout out to Laura – she’s the reason I can finally eat real food again, just in a new way).
Through all the bad, I discovered hidden reservoirs of strength, resilience, and creativity that I may have never discovered otherwise.
My rare disease journey has taught me that it doesn’t come with a planner. It doesn’t give you the luxury of picking and choosing which days work best for your bad days. It throws curveballs when you least expect it. And yet, despite the challenges it presents, it also grants us a unique perspective. It reminds us that life rarely goes according to plan, but that doesn’t mean we can’t still make the most of every moment that comes our way.