Anxiety About Painting A Future With Lupus
I reached a significant age milestone this past year. Everyone keeps asking me if I feel any different, and, for the most part, no. My skin has just a few lines that seemed to have carved themselves out of nowhere; a random gray hair appears whenever I part my hair on the right side; and I’ve grown exceptionally fond of my couch, some tea, and music wafting through the apartment from a record player on a Sunday afternoon. The only time I feel as if I’m getting older is when I try to struggle through today’s TikTok dances with my niece. I’m fine with years passing; I’ve lost too many people I’ve loved to not recognize that getting older is a blessing, even with the pain and frustrations of managing lupus. However, aging means reflecting, and reflecting on the past can mean wondering about the future.
Fearing an Uncertain Future
Last week, the guy I’m dating brought up his vision for his later years, and this was the first time in my life where I wondered what the next 15-20 years would bring for me. Will I retire early? Can a workaholic like me ever retire? Do I want to live where I am or move to an island with mango trees in my backyard? These thoughts by themselves feel absolutely normal. However, with lupus in the equation, the thought shifted. Should I be asking myself what do I want to do or is the real question “What will I be able to do?” I kept my thoughts to myself as he chattered about how he’d choose to let his beard go gray and get an alpaca to roam his yard. (I don’t think he’s joking about the alpaca.)
The Weight of Diagnosis and Planning
That night in the hospital years ago, the room was still, the nurses slowed their buzzing, and my roommate was fast asleep. I thought about all of the portraits for my life, some in progress and some a bit fuzzy. I verbally pulled myself out of my thoughts for the future and took in several deep intentional breaths to bring my body to the present. I whispered to myself, “What would I tell someone in my current situation?”
I wiped away the tear that finally escaped, and spoke aloud to myself: I cannot control the future or change the past. I am only in control of the now. I listed all of the things I could control including my diet, my movement, taking my medication, and following up with my doctors. I can control my relationship with my body, listening when it tells me I’m doing too much and need to rest. I can control the decisions I make about my career, doing what I love but also making sure I balance my needs properly. I can control my finances as best as I can; I have a good friend who’s a financial advisor that’s helped me figure out how to get out of debt and what I need to put away monthly and annually to reach my retirement goals. I can also replace the time I spend worrying with action, doing the things and seeing the people I care about. I can live each day to the fullest knowing I’ve done my best with what’s in my hands. I’ve turned that dampened future portrait into paper mache, believing in my ability to shape my life into what it needs to be.
Reframing the Narrative
I always say that lupus forces me to have to be exceptionally intentional about the things that those without a chronic illness need to do as well. So many around me are struggling to have control over all aspects of their lives, which results in anxiety, stress, and hyperfixation on the worst-case scenario. The truth is, there is freedom in remembering we only have the power of the present, that the scary thoughts may never come true, and you have the ability to revise and edit whatever the forthcoming picture may be. This lesson is one that I have had to continually revisit, and I encourage you to do the same. Trust yourself. Use your past challenges as evidence that there is no reason you can’t handle anything coming. And lastly, if you can paint a negative portrait, don’t be afraid to paint the beautiful masterpiece that could be.
Shanelle Gabriel brings creativity to all she does. As a dynamic performing artist, motivational speaker, lupus advocate, and purpose-driven educator, she has toured across the country and around the world sharing her unique talent. Her performances feel like more like conversations. Shanelle can design tailored performances, workshops, or trainings aligned with your organization or school's goals, audience, and vision.
