It’s a scene no one anticipates.
The doctor walks into the room where you, and maybe a loved one, are sitting. Clipboard in hand, the doctor pulls up a chair, looks at you, and reveals the diagnosis.
The doctor will tell you the physical changes that lie ahead. He or she will advise what treatment is best, what medication might work. But there’s really no way to anticipate just how much will change.
I think one of the biggest changes, and one of the hardest to prepare for, is how the diagnosis affects your identity.
That’s what Amberleigh MacIntyre described in a beautifully written narrative published on The Mighty about a harrowing narcolepsy episode.
Amberleigh starts the narrative with a fairly normal scene: she’s hungry, so she throws some French fries in the fryer.
All of a sudden, she wakes up. She’s suffocated by smoke and has no idea where she is or what’s happening. Then, she notices the fryer. She realizes a blaze could start at any minute.
Her little brother rushes to the rescue. No one is hurt. No one blames Amberleigh for the near fire.
But she blames herself. As the big sister, she’s used to rescuing, not being rescued. She’s used to protecting. She writes:
I am more of a danger than a protector and have a hard time fathoming that, as an incurable disorder, narcolepsy will continue to restrict my life for as long as it spans.
Her words are heartwrenchingly honest. And I think her honesty in questioning her identity is important, because it’s something everyone living with a rare disease goes through.
I’ve seen a family member experience something similar. Fiercely independent and strong, she had to learn dependence after her diagnosis. She had to learn to be helped, instead of always being the helper. It was hard for her to change. It was hard for me to watch her change.
But we got through it, and in the end, she wasn’t any less herself.
I encourage you to be honest in your struggle, like Amberleigh. You’re not alone.
