What the Help!? A Lupus Journey in Real Life

In honor of Lupus Awareness Month, we’re sharing the empowering story of Monique Gore-Massy—a woman who found strength in vulnerability and built resilience through community.

In her own words, Monique takes us through the highs, lows, and lessons of living with lupus. With humor, candor, and insight, she shows what real support looks like—and why none of us should have to navigate chronic illness alone.

On a sweltering July day in 2010, I heard three words that would forever alter the course of my life: "You have lupus."

I vividly remember sitting on the edge of the exam table, legs dangling, slowly going numb—physically and emotionally. I was just months away from my wedding, and all the excitement and joy I’d been feeling suddenly felt uncertain, hanging by a thread. As my doctor spoke, her words blurred together, sounding distant and garbled—like that familiar Charlie Brown hum: "Womp, womp, womp."

Words like “chronic illness,” “autoimmune disease,” “no cure,” and “potentially fatal” rang out. She embraced me, her eyes full of sorrow, and I just sat there—stunned. The diagnosis was a paradox: on one hand, it validated two years of misdiagnoses, sick days, ER visits, and mental exhaustion. On the other, it left me feeling like Princess Fiona from Shrek, trapped in a body that suddenly felt foreign.

At first, I underestimated the weight of the diagnosis. To my doctor’s credit, she stressed the importance of having a solid support system. (Spoiler alert: I didn’t listen at first. If you’re reading this, maybe you can do better than I did.)

Back then, I was knee-deep in wedding planning and gearing up for married life. I just wanted something—anything—to restore a sense of normalcy. But there’s no “Help for Dummies” guide for this. I wanted to be strong, to overcome lupus like a cowboy showdown at sundown. But I was also battling stereotypes, cultural expectations, and harsh self-judgment around illness and disability. That’s when the transformation began: I was becoming The LemonadeMaker —turning lemons into lemonade.

Here’s the truth: you can’t carry this burden alone. Lupus doesn’t come solo—it brings its whole crew to the dance floor. Facing it means gathering your own army. So, what the help!? Let’s talk about what support can really look like.

These are some of the lessons I’ve learned—tools I wish I had from the beginning. Share them with your village. Ready? Let’s go:

1. Acknowledgement Time.
   Managing lupus touches every part of your life—body, mind, spirit, bank account—you name it. It’s like this intricate, uninvited symbiote, always hanging around. Some days it’s quiet, other days it takes over. And that’s hard.
   
   Maybe you’re in a completely different chapter of your journey than I am right now—and that’s okay. Back then, I didn’t even realize I was moving through the stages of grief. Acceptance definitely did not RSVP right away.
   
   But if you’re reading this, I see you. Asking for help is brave—it’s not weakness. I truly believe God placed people in my life who are willing and ready to walk with me. They’re what I call “gap fillers.” Activate them now. Don’t wait. Asking for support is a vital step forward—and it can actually enrich this chronic illness journey.
2. You Can Have It Your Way.
   It’s hard not to feel like a burden sometimes. Over the years, I’ve lost—and slowly regained—so many pieces of my independence: walking, writing, driving, seeing, even showering. At my worst, I couldn’t even advocate for myself, and I hated that. But eventually, I realized—I don’t need to wear the “Superwoman” cape. That thing was a lie, and honestly, shedding it felt like WOOSAH.
   
   Think about what you need from your support system. What helps you most right now?
   
   Would you rather someone just do the grocery shopping, or would a gift card be better? Want to send a list? Get a care package? Want company for the errand? Support comes in all shapes—define it on your terms.
   
   Also, if you’re supporting someone with lupus: don’t say “Let me know if you need anything.” (That line irks me.) Instead, try something specific: “Would it help if I dropped off a meal this week?” That’s love in action.
   
   These days, I’m all about teamwork. I’m the MVP of my clinical care, and I want that same vibe managing my life. Lupus may try to sideline us, but we’re still whole, worthy, and essential.
   
   So ask yourself—does your loved one living with lupus need a caregiver calling the plays, or a care partner tackling life together?
3. Level Up.
   Okay, mini soapbox moment—but join me in a call to action.
   
   Lupus doesn’t always get the spotlight it deserves. That means it’s up to our village to get educated. While we’re over here building toolboxes to survive, our support system needs to build one too.
   
   In the early years of my diagnosis, my husband and I had to figure this out the hard way. Life was moving fast, and we had to learn to move together. I wasn’t always sunshine and gratitude—I was miserable, and asking for help felt like pulling teeth. But he stuck with me. He started learning on his own so I wouldn’t always have to explain. He advocated for me with doctors, with family, and eventually, with himself.
   
   He understood that I couldn’t always show up socially, or intimately, the way I used to. He normalized flexibility. He respected my triggers. He protected my boundaries. That, my friends, is what I call leveling up.
   
   Encourage your village to step up—come to appointments, show up at awareness events, learn the language. It matters.
4. Thank You, But I’m All Set.
   Emotional support? Yes, please. Solutions? Not always necessary.
   
   Sometimes, we just want a safe space to be honest about our pain—without unsolicited advice or toxic positivity. So yes, it’s totally okay to throw a Heisman stiff-arm when it gets intrusive.
   
   Managing chronic illness means we need reliable, ongoing support. Not one-time grand gestures, but steady, consistent presence. We’re not looking for saviors—just real ones.

Before I Go…

Find your community—the one where you’re seen, heard, and respected. The “gap fillers” are out there, ready to stand in the hard spaces with you, no strings attached.

With nearly 15 years of lupus behind me, I can say with certainty: this isn’t a journey you’re meant to do alone.