Turning Toward Pain and Learning From Adversity

Turning Toward Pain and Learning From Adversity
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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, particularly by medical specialists I trusted, wore away my sense of self.

Now that I am diagnosed, I enter into the world as an acute hepatic porphyria patient with purpose. As criticism and misunderstandings constantly bubble up around me, it becomes vital to remind myself every day that I love being a person with porphyria.

In this season of Thanksgiving, I’m turning toward my porphyria in gratitude for all it has taught me. Through my quest to be more mindful and to reclaim joy, I am finding peace with my body. I am also able to more easily give grace, appreciation, and compassion to others.

An ode to my porphyria

I am part of an exclusive group across the globe. Each one of us with porphyria is missing an enzyme that affects our body’s ability to synthesize heme, which results in dangerous neurotoxins coursing through our system.

I am enlivened by our stories of survival. Even when others challenge my pain, misinterpret my symptoms, or judge me for the amount of sleep I need to function, I can air out my frustrations with fellow porphyria friends.

In the safe space we’ve grown to create, we can cry on our challenging days, lift each other up when we are hurting, and find sympathy in heartbreak. Thanks to my community, I’m filled with stories of triumph over debilitating attacks and humor during times our bodies have completely failed us in public, because our dignity is too strong to crush.

When I begin to doubt myself, I am reminded that I am a pioneer living this ultra-rare disease with nothing but a crudely drawn road map that I constantly revise. Medical journals focus on the challenges of diagnosis and opportunities for treatment, but not on the chronic nature of living in this nerve-damaged, volatile body in which pain is ferocious and unpredictable and my life expectancy is questioned. While my symptoms are mostly invisible and my limitations vary from day to day, I remember that I can always find at least one moment of joy, even in the darkest times.

I wear my port and port scars with pride, unafraid to show them off in summer dresses and jumpsuits. When I receive intravenous treatments over a period of hours, I embrace the relationships I can build with nursing staff and fellow infusion center patients.

I place my hands on my hanging bags, close my eyes, and meditate on the power of the medication that’s about to be infused through my veins. I give thanks for how it helps my body find more stable footing.

I love being a person with porphyria because we are so resilient. When it comes to diagnostic testing, most of us heard a whole lot of “no” before one single “yes.” We are among the rare disease patients that most physicians will never see despite practicing their whole lives.

Our heme biosynthetic pathway is one of the more challenging to grasp in medical school. King George III, whose untreated medical condition caused him to be labeled as “mad,” put hepatic porphyria in the history books.

Being a person with porphyria is filled with challenges and uncertainties, but it’s coded into my DNA. As long as I move forward hand in hand with my porphyria, I can find joy in its impact and opportunity in its sadness. I can find ways to love being a person with porphyria.

A wish for this holiday season

In the United States, this holiday season is unfolding amid astounding levels of division in our country, our communities, and maybe even in our households. Rather than focusing on our differences, my hope is that we can recognize that each of us is doing the best we can with the tools life has given us.

This holiday season, I give thanks for all my disease has taught me about living in adversity. My challenge and hope is that I will pause to investigate the lessons in the differing views surrounding me.

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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.

Each morning, I make a choice to harness joy, despite navigating pain and day-to-day challenges of living with a rare disease, acute hepatic porphyria. A writer, creator and rare disease advocate, I believe in the power of speaking truth to generate hope and build connections that impact positive change.

I am the Iowa state ambassador for the National Organization for Rare Diseases’ Rare Action Network, serve on the Young Advisory Council of UnityPoint Health Des Moines, volunteer with the American Porphyria Foundation and am co-founder of This Porphyria Life, an online porphyria community for patients and those who love them. I have a Master’s in Public Health from the University of Iowa, and live in Des Moines with my fiance, Michael, and his two children.

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Each morning, I make a choice to harness joy, despite navigating pain and day-to-day challenges of living with a rare disease, acute hepatic porphyria. A writer, creator and rare disease advocate, I believe in the power of speaking truth to generate hope and build connections that impact positive change.

I am the Iowa state ambassador for the National Organization for Rare Diseases’ Rare Action Network, serve on the Young Advisory Council of UnityPoint Health Des Moines, volunteer with the American Porphyria Foundation and am co-founder of This Porphyria Life, an online porphyria community for patients and those who love them. I have a Master’s in Public Health from the University of Iowa, and live in Des Moines with my fiance, Michael, and his two children.

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