"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.

How Writing Can Change the World

Intentional or not, most of my writing happens in bed. It’s where I reflect on my day, journal my meditations, feel inspired by the words of others, and dissect my dreams. The world begins in my bed. Adorned with luxury cotton sheets and supportive pillows, it’s where I rest. On…

How I Avoid the ‘Sick Olympics’

Acute hepatic porphyria (AHP) is a complex rare disease that takes up a lot of brain space. Nothing is more exciting than when I can tell someone who actually understands it about how it feels, acts, and responds. Venting and story sharing are one thing. Living in perpetual…

What We Get for Staying Sick and Victimized

My acute hepatic porphyria (AHP) diagnosis was a whirlwind that transformed my life and the lives of my loved ones. It took a series of dramatic attacks for doctors to take me seriously. Sadly, this is not uncommon for people with AHP. After nearly two decades searching for answers, I…

This Rare Disease Day, Only Share Your Story if You’re Ready

Every February, my inbox fills with information about Rare Disease Day webinars, forums, and promotions. On social media, patients and caregivers raise awareness through campaigns such as #ShowYourStripes or #ShareYourRare. In Washington, D.C., advocates from around the country gather virtually and in-person to ask their members of Congress for…

Staying in Bed Doesn’t Mean I’m Lazy

I’m a huge fan of mornings. They once stood for solid productivity. Before reporting to the office at 8 a.m., I’d have a three-mile run, meal preparation, personal email, and news headlines all checked off my list. These days I stay in bed, often until 9 or 10 a.m. Still,…

It’s Time to Rewrite the Definition of Porphyria Pain

There is a general lack of understanding and awareness when it comes to pain associated with acute porphyria attacks. Porphyria pain is not well defined in research. It’s misunderstood by doctors and industry professionals, and it’s easy to see why. Pain cannot be objectively measured or seen, and…