One Thousand Flaming Swords — Claire Richmond

The rare disease community took some serious hits in 2020. Critical clinical trials were halted and orphan drug funding targeted the development of COVID-19 treatments. As an extra slap in the face, legislation supporting telemedicine was…

I have to stop beating myself up for being unable to accomplish things my healthy body could. The day I achieved a personal record running a 10K, I couldn’t celebrate because my head was in the hole of a…

When my fiancé, Michael, first asked me out, he never expected to one day be my caregiver. In honor of Valentine’s Day, I dedicate this column to him. Michael is a rock, a support beam holding me up, keeping…

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,…

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…

I would rather put on a strong face than admit to anyone the sheer amount of pain I’m enduring. I’m less focused on describing the actual pain at doctors’ appointments. Instead, I distractedly worry about whether I will be…

Last month, my primary care physician (PCP) referred me to a cardiologist for suspected postural orthostatic tachycardia syndrome (POTS) after I blacked out (again) on the massage table. According to many testimonies on porphyria message boards, POTS is…

It’s that time of year again, when many of my friends and those on social media are making vision boards and charting paths to achieve their life goals. New Year, new you, right? As a human who is chronically…

Like others, I’m guilty of hating on 2020. In relation to in-person gatherings, I’ll be the first to admit I’ve said things like, “After all this is over, …” and, “When we get back to normal, …” But if…

Last week, we decorated for the holidays. Mugs of cocoa steamed on the dining room table, and jolly holiday tunes played in our living room as the kids maneuvered around our tree, bestowing treasured ornament-shaped memories onto perky plastic…

As a person with an invisible illness living in an ableist society, my chronic pain and its effects on my body have been minimized, questioned, and altogether denied. Over time, having my pain and associated porphyria symptoms doubted,…

My upcoming holidays are going virtual. Right now, families like mine across the world are making hard calls about how they will spend quality time with their loved ones this season. In the United States, Thanksgiving is unfolding amid…