Tired of being chronically ill, I used to ignore signs of sickness
At 8 years old, I thought illness would go away if I pretended it wasn't there
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I spent much of my childhood being chronically sick. I’m not talking about a sniffle here or there. I’m talking about being on the brink of death. It happened so often that my mother would joke that we were regulars at the emergency room. I had been diagnosed as a young child with type 3 Gaucher disease, a rare genetic disorder that left me extremely vulnerable to infections.
Having to be so careful — because God forbid I caught a cold after someone sneezed in my direction — was stressful. For most, a cold might mean a few days of sniffles. For me, it often meant several days as an inpatient.
Hospitals became strangely familiar. After enough visits, they stopped feeling intimidating and started feeling predictable. In retrospect, that’s probably what made it so easy to normalize being sick. Illness didn’t feel unusual; it was just something that always happened to me. Eventually, being chronically ill became part of my identity.
However, I was and still can be shy. I never wanted to be the center of attention, but as the “sick kid,” I often was. Wanting nothing to do with that identity, I did my best to avoid or ignore illnesses.
I will never forget the day I was about 8 years old and had had an earache for days. My parents and I were in Blockbuster looking for movies to rent when I pulled a butterfly hair clip from my head and stuck it directly into my ear. It started bleeding, and my parents rushed me to the emergency room.
In retrospect, I think 8-year-old me was trying to find relief because I didn’t want to admit how badly my ear hurt. I’d hoped that if I just ignored the problem, it would go away, and I wouldn’t have to be the center of attention — again. I was exhausted from always being sick, so I pretended it wasn’t happening. The problem was that my imagination was stronger than my immune system.
Looking back, ignoring the issue was not the reasonable solution I thought it was at the time. After my parents brought me to the ER, doctors discovered an ear infection that had gotten so bad it had almost perforated my eardrum.
I eventually reached an age where I could either come to terms with living with a chronic illness or keep ignoring my symptoms and continue getting sick, sometimes to the point of needing extreme medical intervention. I chose the former.
That said, I’m still learning how to walk into a doctor’s office and admit how I’m feeling. I’m only human, and I need help sometimes, just like everyone else. That’s something I will have to work through as I continue living with Gaucher disease.
Note: Gaucher Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.
