With lupus, every birthday is an opportunity to celebrate life

If you, like me, live with chronic illness, have you ever felt like you think about your mortality more often than your healthy friends and family members do?

Since before my lupus diagnosis, when I knew something was going haywire in my body, I’ve given a lot of thought to the topics of birth, death, and the time in between. Because of how chronic illness has affected my life — in every possible way — celebrating my birthday has become the celebration of all celebrations. I embrace it with contagious enthusiasm.

Have you noticed the same thing in your life? That holidays seem so much sweeter?

The reality is that for years, my birthdays were celebrated in the confines of hospital walls and in my bed as I was hooked up to an IV to receive treatments (and dealing with the aftermath of those treatments). Birthday cakes and groups of friends were replaced with hospital food and sterile environments. Birthday wishes were lost in the humdrum of machines and revolving doctors.

But as the years passed and I matured (gracefully, I might add), I began to see my birthday not just as a day to celebrate but as a poignant reminder of the precious gift of life.

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Embracing life

You might be wondering, “Don’t we all appreciate life on our birthdays?” Yes, many do, but for someone navigating the roller coaster of a chronic illness, each birthday is truly a victory lap. I like to think of birthdays as a triumphant declaration that we have conquered another year, defied the odds, and embraced life with our arms wide open.

The truth is, living with a chronic illness means we often dance with mortality more frequently than our healthier peers. Through each medical scenario, some of which are quite traumatic and intense, we become intimately acquainted with the delicateness of life, and thoughts of our life span and quality of life play on a loop in the background of our minds.

I’m not saying it becomes a morbid obsession where we can’t focus on anything else, but rather an awareness that life is fragile and beautiful, something to be cherished.

Over the years, as I’ve gotten stronger and increased my awareness of flares and how to pace myself to lessen their frequency, I’ve been able to establish some birthday traditions.

First, I love to treat myself to a silly photo shoot. This tradition has helped me fall back in love with my body after many years of being angry that it didn’t “perform” like those of the healthy people around me. Today, I understand how hard my body fights for me every day. Over the years, I can look back on these pictures and see how far I’ve come in the healing process.

Marisa Zeppieri, center, celebrates her 46th birthday with friends in January. (Photo by Marisa Zeppieri)

My second tradition is taking a trip with friends who “get it.” Every year, about 10 of my friends — some going back over 30 years to high school — travel with me to a new city, where we stay together in a large Airbnb. What makes these trips so special is that we all stay in the same home and spend uninterrupted quality time together cooking, playing board games, and doing some type of art.

I feel completely safe and loved by this amazing group of people. They understand that I likely will take a nap every day, I need to be near medical care, I have food allergies, and I probably can’t go do strenuous activities during the day (especially if it’s sunny out). But I’m always up for movies and board games.

Last January, we celebrated the gift of my 46 years of life in a house up in the mountains.

My other annual tradition is spending time in quiet reflection about the health trials I overcame in the previous year and how they have helped me grow as a person.

Chronic illness has taught me hundreds of things, both big and small. And while it has put a lot of things into perspective, one that stands out is the reminder that time is currency. And the value of that currency is beyond measure.

I say this as encouragement. For your next birthday, I hope you’ll celebrate yourself and the resilience you’ve acquired from facing a chronic illness head-on. And I hope you’ll exalt the simple act of waking up every day, embrace the journey, and recognize that with chronic illness, every chapter of our lives is worth celebrating!

Note: Lupus News Today 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 Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.