Columns

The 5 Questions I’m Most Frequently Asked About Porphyria

Four years ago, I was diagnosed with acute hepatic porphyria (AHP), and it’s complicated. It’s a liver disease affecting my blood; it’s also an inherited metabolic disorder with neurovisceral effects. I’m still figuring out how to dumb down the mechanics. For this column, let’s skip the medical jargon. Porphyria…

Using Mindful Self-compassion to Enjoy My Good Days

Like many with chronic illness, I can function in high pain and with low energy. Living with acute hepatic porphyria (AHP), I’ve grown accustomed to carrying its weight around with me, to showing up in the world as if discomfort and fatigue haven’t colonized in my body. Every…

For the Women Who Love and Inspire Me, Despite My Illness

No matter what, I will always have my girlfriends. Nothing against my incredible soon-to-be husband, Michael, those were simply the sentiments instilled in me by the woman I admire most in the world: my grandma. Now 96, she has modeled all the behaviors of a great friend throughout my life,…

Fighting for My Last Vice: My Morning (Decaf) Coffee

I love coffee, but it doesn’t play well with my acute hepatic porphyria (AHP). Caffeine stimulates the central nervous system, and in recent years I’ve grown more sensitive to its effects. My AHP already causes me anxiety, irregular blood pressure, and insomnia, and as much as I may…

How to Keep Friends Close When You Have a Rare Disease

My undiagnosed rare disease sabotaged friendships. For years, I kept my acute hepatic porphyria (AHP) hidden for fear of being viewed as weak or seeking pity. As a result, I showed up in the world as guarded and aloof, shy and uninterested — traits that do not align well…