5 Things I Learned from Living with an Incurable Illness

Seven years ago, I was having a conversation at a birthday party when I suddenly felt like I was in a dream. My voice felt far off, the room looked two-dimensional, and I couldn’t get my eyes to focus. Fifteen seconds later it stopped, but that episode was only the beginning.

I started having a variety of other bizarre experiences. Sometimes it seemed like I was watching a scratched DVD — other times I would lose my words mid-sentence or forget how to type.

My doctor eventually diagnosed me with epilepsy, a disorder that’s caused by abnormal electrical activity in the brain. It’s an illness people rarely recover from, and if you don’t take medication, the symptoms only worsen. It can be hard to find the right drug to treat the illness; in my case, I ended up having to change medications five times over seven years, which was incredibly disruptive.

My medication changes resulted in a persistent and embarrassing slew of side effects, which at different times included foggy thinking, dizziness, irritability, forgetfulness, and exaggerated feelings of sadness. They were a reminder that although I could treat epilepsy, I couldn’t get my life back. Abnormal was the new normal.

Nobody prepared me for the process of learning to live with a long-term illness. In fact, when the doctor gave me the diagnosis, he basically just announced it and then left my hospital room. I didn’t feel sad when he left though — I felt numb. But the numbness eventually wore off, leaving me to sort through the feeling that my body was damaged goods.

If I could go back and be the one who delivered the news, I would’ve offered some compassion or at least said, “I’m sorry you’re going to have to go through this.” And if I’d known then what I know now, I would’ve shared the following basic truths.

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