"One Thousand Flaming Swords" – a Column by Claire Richmond

candy, joy, medical gaslighting, voting, flare, attacks, twice a month, pain, life

Claire hopes speaking her truth builds connections and generates hope. At 32, she was diagnosed with acute hepatic porphyria (AHP) after a 19-year search for answers. As severe, unexplained pain became a focal point of life, she exiled her body to protect her mind. Through laughter and challenges, “One Thousand Flaming Swords” navigates daily life with AHP, as Claire rebuilds the bridge between her physical and mental being.

Why I Won’t Quit Wearing a Mask

Waiting in the center aisle of the plane wearing a brown backpack and a blue surgical mask, I felt the eyes of strangers on me. It was February 2020, and my family was boarding an early morning flight to Orlando, on our way to Disney World for a little winter…

I Have Acute Porphyria, and I Am Ticked Off

Kicking off my shoes, I turned my chin up to the top of the hill, where the grassy crest met the garden and the sky beyond. I looked to my right, where one of my dearest friends Jennifer had mimicked my actions and slipped out of flip-flops. Amid the blowing…

The Symptom-tracking Method That Actually Works for Me

Deep in the dark recesses of my bottom filing cabinet drawer is a collection of hard-bound, brightly colored planners from years past. Each agenda represents a year in my life — 365 days of to-do lists, Little League games, project deadlines, doctors’ appointments, birthdays, book clubs, coffee dates, meetings, and…

My ‘Fibromyalgia’ Turned Out to Be a Rare Disease

At 16, I drove my 1992 Honda Accord to my biannual rheumatology appointment. In the lobby, I waited among older patients, who were accompanied by their middle-aged spouses or adult children. Flipping through a three-month-old issue of Reader’s Digest, I felt mildly self-conscious about my nonorthopedic sneakers and cranberry-colored spiky…

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…