Turning Down When When Everyone Wants to Turn Up
According to researcher Asad S. Khan, "Your 20s are the freest years you will ever have." I’m absolutely sure he wasn’t referring to my 20 year old self being diagnosed with lupus that year, but I do understand his point. Prior to my onset of severe symptoms, I was a member of a squadron of five young women seeking to do everything possible with our newly accessed freedom and a bit of extra change from our on-campus jobs and retail roles.
Redefining Freedom in My 20s
Our Friday and Saturday nights were filled with laughs at lounges, amaretto sours at bars, late night train rides to clubs, followed by 3am breakfast at our favorite diner. Before knowing why, my regular dozing on the cozy couch was a source of humor. Music blaring would not prevent me from nodding off in the corner, and as my symptoms progressed and were later labeled systemic lupus. The weekends of touring the city nightlife became the prelude to weekdays filled with pain and fatigue. It would take four days of rest to recover from two nights of festivities.
Trying to Keep Up
I grinned and bore it, trying to be the girl I was before my diagnosis. I didn’t want to miss a comedic moment or a tale of who did what with whom. I didn’t want them to notice that something had changed. Most of all, I was trying to convince myself that my life could stay the same. The guilt of not being “there” with and for my friends forced me to push my limits. Finally, the fatigue and aches began causing me to fall asleep in my bed, fully dressed, before even leaving to see my friends. Soon they became accustomed to my texts the next morning apologizing for being a no-show. I noticed my friends stopped inviting me out as often, which left my body relieved but my heart aching. I could no longer hide behind the full face of make-up and my cute outfit.
The Power of Honesty
The time came for me to be honest with my friends and myself about my struggles. I called them over for what seemed like a regular girl gathering, and after catching up, I shared that I’ve been having trouble adjusting to living with a chronic illness and that I was sure it impacted my engagement with them. Since with lupus, how you look on the outside doesn’t always match how you feel inside, they had no clue I was struggling to keep up. They also shared that they concluded that my absence meant I just didn’t want to hang out with them anymore, which was far from the truth. That day, we found new ways to enjoy each other’s company by being intentional—visiting museums, going out for brunch, or simply staying in to gossip over popcorn. When we did go out, my friends wouldn’t assume I was traversing the city with them and would create deliberate exit points so I could leave early without an issue. They also would have the bartender craft a cute ginger ale shot, complete with lime, since alcohol was a no-go for me.
Finding Balance in Friendship
Even years later, I still have moments where I have to redirect my FOMO (fear of missing out) and sadness for not showing up for friends and family. I have to remember that the people that truly care about me want what’s best for me. Living with a chronic illness means we have to trust others to respect our needs which starts by communicating what they are. Maybe it’s showing up to an event, hugging the host and saying, “I can’t stay for more than an hour, but I wanted to be here for you.” Maybe it’s being selective about what we choose to attend so that we can truly be wide-eyed and fully present when we do make an appearance. We should remember that our friendships aren’t based on doing everything our loved ones desire but on the quality of the connection we have. Moving from obligation to healthy communion is freedom in friendship, one where all parties understand and support the long-term well-being of each other.
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.
