When my disability is treated as a secondary condition

I tucked my head against a gust of winter, and followed my partner, Michael, toward a brightly lit bakery teeming with strudel, croissants, and Dutch letters. Inside, I pointed at cookies under a glass case and watched as a woman in an apron delicately placed my selections into a white box. The weight of the baked goods in my hands provided me with a sort of comfort, like there would be a reward for the difficult doctor appointment ahead.

Pella, Iowa is an hour from Des Moines, known for its Dutch heritage, quaint downtown, and delicious bakeries. Recently, a new specialist opened his practice at the outpatient clinic of its regional hospital and he agreed to consult with me about chronic migraines.

In recent years, severe and frequent headaches have corresponded with my acute hepatic porphyria (AHP) attacks. For most of 2023, I was caught in a loop of horrific abdominal pain followed by pulsating spikes through my forehead and uncontrollable vomiting. When the fog lifted days later, I was able to start eating and drinking again. Often, I needed a mobility device.

I’ve seen neurologists for AHP, but a when I asked for help with a migraine diagnosis, it was treated as a secondary condition. They were able to monitor my AHP-related nerve damage, but weren’t specialized in migraines. I sought referrals a number of times, but they were rejected.

That’s how I found myself anxiously waiting in the doctor’s office of a rural Iowa town.

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Taking the test

A nurse left me with a clipboard and pen. The list of questions stared back at me, threatening to swirl together and blur off the page. The Migraine Disability Assessment (MIDAS) Test is a questionnaire to clarify the impact of headaches. The MIDAS scores and corresponding definitions are as follows:

• 0 – 5, no disability
• 6 – 10, mild disability
• 11 – 20, moderate disability
• 21+, severe disability

I scored 141.

There’s been a handful of times I’ve felt well and truly stuck with this disease, like I had nowhere to turn and no options to choose. It’s a dark, hopeless space. That’s how I’ve been feeling with chronic migraines. After riding out the worst of symptoms alone under my covers, I’d return to the world and cope the only way I knew how. By minimizing my illness. Women are socialized to  handle things and not complain. I could manage it. No big deal, right?

Disease denial

In that 90-minute appointment, I learned more about my sensitive brain than I had in the five years I’ve asked providers for help. On the drive home, my head found Michael’s shoulder. Softly, I cried.

I’ve been in denial. I needed to grieve.

Michael took one hand off the steering wheel to grab my fingers. “I’m so impressed at the intentional way you’ve expanded your network,” he said thoughtfully.

In the last year, I’ve strengthened collaborative relationships with my oncology team, began treatment with a neurology physical therapist, joined the member advisory board of the American Porphyria Foundation, and found acceptance in a local community of people impacted by diseases like cancer. Now, I can add a responsive and compassionate migraine specialist to my group of providers.

This week, I start a treatment for chronic migraines, but it’s too new to be on the AHP safe drug list. After consulting with a national porphyria specialist and learning more about how the medication is metabolized, I’m hopeful it won’t trigger an attack.

I squeezed Michael’s hand and said, “I’d rather be the person who trusts things will work out.”

I have to remain cautiously optimistic. If I want to get unstuck, I have no other choice.

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.