Having an undiagnosed (or partially diagnosed) chronic illness is a bit like being Alice. You worry you might be crazy – you always feel slightly unhinged. You’re perpetually chasing something, but you don’t really know what it is, or why it thinks that you’re late. The truth is that you’re living in a parallel universe while the world continues to spin above you.
As I previously alluded, I saw the white rabbit a lot as a kid. He was there all of those times that I threw up for no discernible reason, turned up with a “random” bruise, fever, or rash, or went through a particularly rough patch of growing pains. When I started having headaches he was there too. I got pretty good at explaining him away (e.g., “I’m imagining it” or “I’m just sore/tired from my workout” or “It was probably something I ate”).
For a long time, I think that gymnastics insulated me from my disease. Not only was it a great source of excuses for the way my body felt, but it also made me strong and likely stabilized my joints. What I didn’t know at the time was that it was a double edged sword. That the unrelenting pounding was taking its toll on my already vulnerable spine. That I would still feel the effects today. It was both a blessing and a curse.
Fast forward to my freshman year in college, and the rabbit was everywhere. On my own for the first time, I went after my dreams and the energy that it took nearly swallowed me whole. That year alone I had mono/Epstein-Barr Virus, recurrent strep, and pneumonia. My headaches transformed into basilar migraines, which were incredibly painful and came with a whole host of frightening neurological symptoms like vertigo, and visual changes. I was falling, literally and figuratively.
As my CV grew, so did my list of diagnoses. College became grad school, and my episodic (though complicated) migraine became chronic, and then daily. GI difficulties surfaced, and I had a bout of autoimmune hepatitis. My muscles and joints began to ache; they called it Fibromyalgia. Soon I was a young professional living with a level of fatigue beyond that many older people I know experience; They called it Chronic Fatigue Syndrome. When my right side went numb for months, MS was ruled out (and treated for), then Lupus. It didn’t matter what they called it, the struggle was real. I spent the majority of my time trying to keep up the appearance that I was afloat in a world that I no longer lived in. It further exhausted me.
At some point during this journey, I had a shift in perspective. I realized that as Lewis Carroll so elegantly put it – “I’m not strange, weird, off, nor crazy, my reality is just different than yours.”
So, while I’m certainly not giving up, I’m not pretending anymore.