Lupus Makes Me Crave Control

A month ago, I quit my job as a barista in search of something different. I applied for nearly everything with only one qualifier: I didn’t want another job in the hospitality industry.

I’m a big believer that you will never have to fight for what is “right” for you. Everything in my life that has served me has been almost effortless, including this job.

I now work as a picker in a warehouse. From 7 a.m. until 3 p.m., I walk trollies up and down the aisles of the warehouse and pick items to fill online orders. It’s not very exciting or mentally stimulating, but in this era of my life, it’s exactly what I need.

Even in the short term, this job has gifted me a lot, including financial stability and a way to be regularly active. It has given me back control over many aspects of my life.

Control has been a touchy subject for me ever since I was diagnosed with lupus. Before chronic illness, I never thought of myself as someone who needed to feel in control of their life. But that all changes when you’re forced to surrender unconditionally to your health.

Lupus took everything I knew about myself and where I fit into the world and reduced it to rubble. Then, in a shower of chaotic confetti, it threw the dust of my old life into the air. All I could do was watch as everything I once held concrete disappeared into the wind. It’s because of that event that I long for the feeling of control, for the feeling of something stable and certain beneath my feet. When I get something to hold, I keep it close to my chest, clutching it with all my might.

If I take a magnifying glass to it, I don’t crave control as much as stability. After my diagnosis, my life will never truly be stable. My health is in constant flux, always on the precipice of tipping back into a flare. In the back of my mind, that knowledge is ever-present. And it only makes me cling harder to control.

I don’t need everything to always be the same — I just want to have a say in what transpires. Everything in my life is conditional. Everything relies on the “stage” I’m in: a flare, remission, or the various increments of limbo in between. Lupus significantly dictates how I live and what I am able to do. And I don’t know how to be OK with that.

I love my new job. But should I go into a flare again, this job will not be a viable option for me. Last week, I walked anywhere between 15,000 and 19,500 steps per day. In 2016, at the height of a flare, I couldn’t get myself out of bed, let alone walk several miles a day.

I could be living either of my two polar opposite lives at any point. Since mid-2016, I’ve put blood, sweat, and tears into making my life what it is today. If I get sick, life as I know it will evaporate and cease to exist.

I live every moment of my life on a teeter-totter. The life I live today as I continue edging into remission is worlds away from the life I would live should the scales tip me back into a flare.

Sometimes it’s hard to look back and remember what it was like to be in a flare for the first time. It’s been almost five years since my diagnosis. The journey out of my darkest days is full of many moments of triumph and success. But amid everything I have to be proud of is a lot of pain, heartache, and struggle.

I know why I crave control and stability: No matter what I do, one day the table is going to turn and remind me that I’m not in control. Not even a little bit, not even close.

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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.