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.
Like many people with painful chronic illness, I struggle with my mental health. This morning, simply getting out of bed took a lot out of me because I was tired from a restless night. Then, as my wheels got turning, I experienced the onslaught of dread that accompanies any upticks…
I walk my standard poodle, named Lenny Bruce, around the neighborhood every afternoon. We live in a historic area of Des Moines, Iowa, with sturdy sidewalks and old, expansive trees. Over the last week, I have relished the transformation of summer giving way to autumn. There’s an emerging crispness in…
I have a history of abusive relationships with medical providers. My trauma history stems from medical mistreatment and being dismissed while experiencing serious symptoms. My story is not uncommon. Disclaimer: This is not a piece to hate on doctors. I have a history of healthy, productive relationships with medical providers,…
Some will read this column and think it’s too political — that politics isn’t “in my lane” as a writer. I thought deeply about this prior to posting. On a steamy, early July morning last summer, I got behind the wheel of my car next to my childhood best friend…
In accepting chronic pain and the acute intermittent porphyria (AIP) roller coaster, I came to terms with the realities of my new normal. That brings days that must happen and times I get to choose if the burden of my acute hepatic porphyria pain and its corresponding shame…
Editor’s note: This column was updated Sept. 15, 2020, to emphasize the individuality of the writer’s personal experience, and now specifies the importance of seeking guidance from medical professionals. When my second port was implanted on the left side of my chest, just above my heart, I decided to give…
In the early morning hours, my body jarred me awake. Before opening my eyes, I felt the onslaught of symptoms I knew would be coming before I put myself to bed last night. Pain. Not a stomach cramp, not a tummy ache, but bullet holes riddled through my mid-section, smoldering…
Acute intermittent porphyria (AIP) doesn’t define who I am, but it does control what I can do. And my tendency is to talk about that. I will voice my daily struggles, reflect on my hospitalizations, and speak up about the permanent nerve damage caused by nearly two decades of…
When Desiree Lyon, founder of the American Porphyria Foundation, described to a doctor her first attack of acute intermittent porphyria (AIP) at the age of 17, she likened it to “a thousand flaming swords” embedded into her abdomen. I think of her words often, as I’ve struggled throughout…
Get regular updates to your inbox.