Warrior Wednesday: Meet Jenna

Say hello to this week Wednesday Warrior: Jenna!

We made Jenna her medical alert necklace back in February. We have been following her journey as she battles with Von Hippel Lindau syndrome. ⁠

Despite the constant ups & downs & unpredictability of her medical condition, Jenna always fills our Instagram feed with positivity and her fantastic sense of style. ⁠

Read below to learn more about her medical journey ⬇️

Let us continue to fight together and inspire each other.

Fight, inspire, breathe, repeat.

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Jenna's Story

Photo Courtesy of Jenna

Hi there! I'm Jenna and I'm a writer/stylist/activist/enthusiast/playlist creator living in Brooklyn, where my medical journey began at least 66 years ago with my father, in East New York. My dad (and best friend, and hero) inherited and passed on the autosomal dominant genetic disorder Von Hippel Lindau. The disease is characterized by the formation of tumors in different parts of the body.

What was the hardest part of your medical journey that you had to overcome?

Like many people living with chronic illness, my life has been punctuated by surgeries, doctor visits, tests, and recovery time. Through it, all, the violence of capitalism and its bureaucratic stranglehold on American health care have weighed on me most heavily. When hospitals, doctors, and health care professionals must operate for profit, it's inevitable that maintaining my health and monitoring for tumors will be costly and confusing. It's hard to shake the anxiety and sadness that comes from navigating insurance premiums, coordinating communication between radiology labs and between doctors, constant medical bills, and regular doctor visits, all while feeling like just another patient ID number.

How do you live beyond your medical condition? What motivates you to live beyond it?

All that said, living with VHL (and my family's history) means knowing I have less time than able-bodied people. Though it can be seen as morbid to think about this, I feel liberated by this fact. To me, life has more meaning because it has an end. This sense of urgency makes me feel more alive, and more certain of what I want and empowered to get it. I believe we spoonies have a perspective — that it takes darkness to fully experience light — on how to fill our lives with meaning.

What would you say to others who are experiencing similar medical journeys?

I see you. Take care of yourself. Know, own, and demand respect for your special needs and boundaries. Explore all the ways you, your body, and your mind are beautiful, and accept and forgive yourself, your body, and your mind when you feel they have betrayed you. Seek out and allow yourself all the lightness and indulgence and happiness. You deserve it.

As a community, how can we help and support you?

To support people living with chronic medical conditions, it is crucial to educate yourself on the illness and on disability rights advocacy. I'd personally ask for able-bodied friends and loved ones to read on spoon theory (I identify with this framework, but not all those living with the disease will). Listen and even offer encouragement! when I express my needs and boundaries.