Don’t ask me for what I need; instead ask me this

Acute hepatic porphyria (AHP) symptoms are caused by a specific set of triggers, so early on in my rare disease journey, I used strategic lifestyle adjustments to prevent and predict my attacks. But it wasn’t that easy.

The first three years of my diagnosis, I painstakingly tracked my symptoms, recording them in different ways: notes, bullets, even assigning numerical values of severity. Then, I’d back up a day or two and overlay them with variables that could explain my flare, such as ovulation, stress, or a too-low intake of carbs on a previous day. My meticulous notes lived in printed planners from 2017 to 2019. Now, shoved in a shadowy file drawer, they’re embers of a discarded experiment.

My tracking exercise was a bit disappointing, because I failed to establish patterns. But it wasn’t a waste of time. In those early years, I had a lot to uncover about my disease.

Lessons in acute porphyria

I learned that I tolerate some of my triggers better depending on other variables occurring in my life. I learned that physical and mental stress are hard to measure, but have a big impact on my body. Most important, I realized in clear detail I have many overlapping symptoms day-to-day, both chronic and acute.

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A page in my old planner tells of Nov. 10, 2018, when I was constipated, nauseous, anxious, and experiencing acute abdominal pain. I wasn’t home on my couch or in the clinic; I was on a business trip to Phoenix. I’d grown accustomed to feeling this way often enough that I shamefully hid my illness, mistaking it as weakness. Instead of caring for my body, I pushed through.

I began to dissociate my pain as a teenager, taking perverse pride in reporting to work during an attack or going out with friends despite feeling miserable. I look compassionately back at that version of myself, who was new to the diagnosis and lost, gripping to an old way of life until her fingers finally gave way.

A communication disconnect

My spouse, Michael, observed me in hundreds of attacks, and days like Nov. 10, 2018, are confusing to him. Am I in an attack? Should I be hopping on a plane? Do I need something from him? Always respectful and patient, he took my lead each time. He knew before I did that I wasn’t a reliable measure of my own health.

Michael’s good morning kiss was often accompanied by a question of how I’m feeling. Initially, I’d rattled off a bulleted list of symptoms, matching those noted in my planner for the day. He’d go take a shower and expect me to take it easy, only to emerge baffled to see me preparing to leave for a coffee date.

I understand the confusion. In Michael’s mind, how can I be nauseous with acute pain and still able to run errands before my doctor appointment? For those of us with chronic pain, it’s easy. We live every day in discomfort and pain, so we get used to it after a while. We don’t let it uproot our lives.

“I wish you could live 30 seconds in my body,” I’d tell Michael during a bad attack, because otherwise it seemed impossible for him to understand what I was going through or capable of. In absence of body-swapping, we were determined to better communicate about my AHP.

We tried a stoplight system, where green was a good day and red was bad. Then, we attempted a daily 1-10 rating system of my general well-being. Neither system worked — because my denial about how porphyria symptoms affected me was at the heart of our disconnect.

Asking for what I need

As I grieved aspects of my old life and turned toward a more values-focused way of living, some things about my daily existence became abundantly clear. Some days, I need help with the dog. Others days, I need a ride to the clinic. And sometimes, I just need someone to sit next to me while I’m watching trashy TV, so that I know I’m not alone.

For years, Michael and I had been focused on the wrong question. It wasn’t how I felt on any given day that was important; it was what I needed. It was up to me to define, and up to me to ask for help.

No one taught me to listen to my body’s needs or trust my instincts. That took years, and asking for support has been an ongoing challenge. But there’s nothing more validating than being deeply vulnerable with someone I love and have them step up in response.

For anyone having difficulty interpreting their AHP or any chronic disease for their loved ones, I encourage you to take the focus away from your symptoms, look deep inside, and try asking instead for what you need.

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.