For years I hid my illness from everyone around me. Every time friends came to visit, I had my dad hide all the medical equipment in the attic, did lunchtime meds and nebs on the school toilet and hid my PICC line under long sleeves – even on hot summer days. That’s how I was raised – hide your weakness.
Then, in 12th grade, we had to do a presentation about a neurological illness. I could have chosen multiple sclerosis or Alzheimer’s, but I didn’t. I asked my teacher if I could talk about neurological Lyme disease and epilepsy. I could. And I did.
When I started, I was so nervous I was shaking, but when I finished, I knew I had done the right thing. I showed the class a photo of the equipment for my medical evening routine. They now know that epilepsy is not always unconscious people with muscle spasms and that Lyme disease is complicated and dangerous.
I also talked about my personal experiences. That I can’t eat. That I have a central line. That I am immunocompromised. That I have had episodes of not knowing who I was. I kind of shocked the class, but I don’t regret it. Here are two reasons why:
1. They are aware of the dangers of epilepsy and Lyme, and know they should see a knowledgeable physician when experiencing symptoms after a tick bite. They also know that chronic Lyme exists.
2. I no longer feel like I have to hide. My teacher doesn’t ask for an explanation when I run to the bathroom during class. My classmates stay away from me when they are “normal people sick.” I hardly ever am stared at when checking my vitals; I can even do IV meds during class if I need to!
This presentation was the beginning of a new life without being ashamed of my chronic illnesses.
Don’t be ashamed of something that is inevitably there. Being open can change everything. For me, it was one of the best decisions I’ve ever made.
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