Learning to love myself despite chronic porphyria symptoms 

Practicing self-compassion helps me find joy in life with a rare disease

Claire Richmond avatar

by Claire Richmond |

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My dog, Lenny, walked alongside me in his red vest, adeptly navigating the display tables heaped with candies. At our neighborhood chocolatier, glistening pink wrappers and crimson hearts had replaced clearanced holiday treats. When we came to the glass case, Lenny patiently settled on his belly while I peered at the truffles, chocolate-covered nuts, and caramels.

“Can I try a cashew?” I asked an aproned woman behind the counter, knowing she’d pass me a few. The smooth, bitter richness of the dark chocolate blanketed a gentle, salty crisp of the roasted nut. I can never decide if I should hold it on my tongue or bite down, but either way, you can’t lose. I purchased a small canister to snack on at home, a Valentine’s Day gift to myself.

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My Secret Weapon for Managing Acute Porphyria Attacks

I can nurture myself

Last autumn at a silent retreat, I sat cross-legged, balancing a notebook on my ankles. That week, I listened to Sydney Spears, PhD, a licensed clinical social worker, talk about mindful self-compassion. I meditated with the group and reflected on the nurturing I can give to my body when it’s hurting.

“What are the small things in your life that bring you joy?” Her voice was gentle, projecting love onto the group with each syllable.

I snapped off the cap of my marker and stared down thoughtfully at the lined paper. I thought about the gratitude I’ve found, despite frequent acute hepatic porphyria (AHP) attacks and severe migraines. In the past year, I’ve worked on reframing the days spent sick in bed and accessing that innate knowing within my cells to be still.

It started two years ago with three words on a Post-it, which I hung behind my headboard: “Rest is productive.” This was my mantra until I really believed and embraced it as a more habitual thought pattern. I used to feel a gnawing compulsion to measure my days based on what I got done. This habit became problematic when AHP put new limitations on how I spent my time.

I once judged my body and felt shame. Now I tell myself my situation is temporary and that rest is the kind thing to do while I’m feeling ill. When I grow discouraged and depressed at the impact of my symptoms, I remind myself I’m doing the best I can. I take long showers to connect with my body in a more comforting way. I imagine floating above my bed and looking down on my form, under blankets and surrounded by books, and while my body is hurting, I notice I look peaceful.

I can find joy

I started writing a list of things that give me joy:

  • Laughing with loved ones
  • Autumn leaves
  • Blooming peonies
  • The moment Lenny really understands a new command
  • A shoulder massage
  • When my kids offer hugs
  • Watching my nieces discover the world
  • The steady pressure as my partner, Michael, puts his arm around me at night
  • Watching basketball with my grandma
  • Cooking dinner for others
  • Cutting flowers from my garden
  • Letting my fingers linger on the bark of a tree
  • Watching the sun set
  • Going to a pumpkin patch
  • A strong latte
  • Singing loudly to a song I know by heart, in the car, with my windows rolled down
  • High-quality dark chocolate.

With the capped end of the marker against my lip, I read through my list. Nowhere did I write about extravagant tropical vacations, designer sunglasses, or new bedroom light fixtures.

When the group was done writing, Spears asked, “How many of these things could you incorporate more intentionally into your life?”

I put a check next to things I could do every week and was surprised at the result. Suddenly, that $7 latte I once thought extravagant transformed into an act of self-love.

When I returned home, I shared the list with my friends and family. I encouraged them to make and share their joys with me, too.

‘I can buy myself flowers’

We deserve to prioritize nurturing ourselves. But it’s not exactly natural to think this way when we’re fighting to survive, and our bodies are in so much pain we’re constantly exhausted. Bed can easily transform from a place of comfort and relaxation to one of confinement.

The whole Valentine’s season can be challenging when our relationships have fallen apart because of illness, or our romantic partners have morphed into caregivers. This year, like a Miley Cyrus song, can we instead turn the focus onto showing love to ourselves?

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.


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