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 leaves of rural Iowa, we smiled and took deep breaths. Then we ran, our bare feet beating against the hillside’s cold grass. Swinging our arms, we raised our voices in satisfying war cries, lifted our knees, and gulped fresh air into our lungs. We screamed again.

We yelled at nothing and at everything. We screamed because we had already tried crying and talking and sleeping and numbing out to “Bob’s Burgers” on Hulu. On that autumn day last year, we ran yelling up that hill because we had so much anger to release.

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I recently learned how angry I am. Last fall, I started meditating because I was super anxious. Then, little by little, tiny dust particles and pebbles started chipping away from an enormous boulder, obscuring my heart. Underneath, hidden and pulsing, lived tender, raw pain.

Anxiety shields my anguish so I can function day to day. But living that worrying life stresses me out. I knew what I had to do to move this energy through. I had to get mad.

All this painful processing would be much easier if I were a “punching something” person. But I’m more of a “lay on my back in bed all night ruminating on self-judgment and shame” type of person. Eyes closed, heart pulsing in my ears, I will repeat every conversation that I wish could have gone differently until the sun comes up — and then I need twice the coffee to function.

Through meditation, I’ve discovered that emotions lurk beneath this sad blanket of nerves, and I’m the one that’s attached thoughts to them. Digging deeper, I uncover mountains of sadness, disappointment, and grief that are stuck in my body. I blame acute hepatic porphyria for a solid 90% of this pent-up rage.

Reasons to be angry

Quiet acquiescence is my modus operandi. I hate confrontation, and disagreements make me feel super awkward. When it comes to my invisible illness, I’ve experienced countless maddening misunderstandings. During my 19-year search for medical answers, any will I had to fiercely self-advocate was belittled, devalued, and transformed over the years into shame-filled anxiety.

Although feeling my anger is new, the emotion has been embedded in my body for years. It’s been waiting and building in my chest with each new trauma and mounting medical frustration.

Following is a complete list of reasons why I’m angry.

I’m angry that there’s a pile of bogus documentation in my chart, including a conversion disorder diagnosis and mention of drug-seeking behavior. I’m angry that my illness is invisible and medical professionals have so easily dismissed my pain as a mental health-related issue. I’m angry that a medical provider can chart about me without bothering to learn anything about my disease. I’m angry that my doctor can order a medication, and a health insurance representative can deny the authorization, despite knowing nothing about my condition.

I’m angry that I’m not able enough for society and not sick enough for health insurance companies. I’m angry about my undiagnosed years because I wasn’t believed or understood. I’m angry about my post-diagnosis years because I’m judged by my peers and medical providers. I’m angry at my body, my job situation, my in-the-toilet stamina, my lost ability to run long distances, and the fact that I can’t enjoy a frosty India pale ale on a patio without consequences. I’m angry that I have to constantly prove myself to everyone — especially myself.

Ways to express my anger

I’m on a mission to more readily honor my anger, but I’m still not and will never be a “punch something” person. Instead, following are some healthy anger-releasing methods I’m trying on for size:

• Yelling into a pillow (the fatter and softer the better)
• Screaming in my car while driving solo on a two-lane highway (I learned this one from my grandma, G, who’s taught me almost all of life’s important lessons)
• Throwing clay balls as hard as I can against a brick wall
• Running up a hill and screaming (for bonus feels, try this with a friend)

I will never love confrontation, but I recognize that uncovering and releasing my inner anger is a form of confronting myself. On that October day in the Iowa countryside, Jennifer and I didn’t care if we were heard or seen. When I got to the top, chest heaving and throat raw, I felt elated — like I had dislodged a boulder from atop my chest. Smiling at each other, we nodded and walked back down to do it again.

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Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.