My Battle With Lupus: "Partying with Lupus...Sounds like an oxymoron" / by Shanelle Gabriel

The last few blogs talked about me dealing with Lupus personally, but how does Lupus affect interactions with others? Since Lupus isn't always a disease that is visibly noticeable, it's hard for others to grasp the concept that just because you "look" okay doesn't mean you're okay. Once I started learning how to listen to my body, I was a lot more responsive to when it told me I needed rest. Now, my high school crew (we called ourselves The Fab Five aka Femme Fatale) liked to party. Our meet-up night was Saturday, after a full day of being in church for Sabbath School at 10am, Divine Service from 11am-2pm, and Youth Service from 4:30-7pm, with an occasional meeting right after till 9pm. The plan would be to get home, shower, and hit the club. For those of you not familiar with NYC-style partying, the clubs don't close at 2am like most places. We'd stay till after 4am, and a few times we'd see the sun rise while having breakfast at a diner in full club-attire. I loved being around them, sharing jokes, dancing, sweating my hair out, and all that, but the next day...was like murder on my body. I'd have to sleep the entire day away just to feel halfway normal. I'd be achy and groggy for two days from the partying, not to mention from just being tired from being busy in church all day. Sometimes when I went out, I'd be ready to go home but didn't want to be the kill-joy and say anything. Eventually, I began missing the club-outings. I'd have every intention on going, but while waiting for the others to get ready, I'd just sit down in the living room for what seemed like a second that would turn into an hour later, me half asleep whispering into a phone "Y'all, I'm not coming. Have fun." I could tell they were aggravated but my body had already shut down not only because it was weary but even at the thought of running the streets past 2am. Soon, they stopped inviting me out.

The other issue they had was with the fact that while I wouldn't go party with them, I was in poetry spots every other night. To them, I just didn't want to roll with them. Maybe they thought I preferred my poetry friends to their company. They didn't understand that the average poetry venue let out at least by 12am, good enough time for me to have sufficient rest that night, I wasn't pressured to drink so my body wasn't dehydrated the next day, and I wasn't on my feet in 4 inch heels all night. Poetry spots were the perfect blend of work and entertainment for my achy body. But my friends really thought that I just didn't want to be around them anymore. I looked fine, I could go to the Nuyorican Poets Cafe any given night. Why can't I be the same fun, down-for-whatever Shanelle I was before?

In talking to other people with Lupus, I realized this battle was very common to us. Many of us lose friends because some people can't understand how difficult it is to pretend to feel "normal" and to act as if things within us haven't changed. Lupus changes your interactions with others; you can't do all the things you used to do without paying the consequences. I have friends that live in the Bronx that I don't always get to visit because while getting there when the sun is up is easy, I know the ride back home late at night is gonna be tiring. I have learned how to adapt a bit though. Now, I schedule naps prior to me hanging out late. I make sure I have nothing to do the day after I go out. I drink a LOT of water because the more dehydrated I am, the more drained I tend to feel. I don't go out EVERY night of the week; I pick and choose which events and hangouts I NEED to be at. Sometimes, instead of clubbing, I'll suggest we go out to a restaurant to eat. Bonding over food can be just as fun as bonding over a dance floor. Or we'll search for something cool to do that isn't as strenuous on the body. The key is finding the right balance because to end your friendships because of Lupus would mean you're ridding yourself of another positive outlet and support system in your life. Maintaining your friendships can keep you grounded, optimistic, and feeling some sense of normalcy in your life.