Living with Lupus: A View from Patty’s World

Over the years I have talked with my sister and discussed how Lupus impacts her life and as we are in the middle of Lupus Awareness Month, I decided to write this from her perspective and also share some recommendations on how to be kind to yourself.

A view from Patty's world:

"I live with Lupus.

But more than that—I live with uncertainty.

I live with the kind of fatigue that makes even brushing my hair feel like running a marathon. I live with rashes that flare up when I’ve had too much sun, and the sinking feeling when I have to cancel plans—again—because my body has other plans.

One of the hardest parts of living with Lupus isn’t just the pain or the symptoms.

It’s feeling like I have to explain or justify why I can’t commit, why I need more rest, or why I’m not the same person I was a year ago… or even a month ago.

The truth is: Lupus is unpredictable.

One day I’m okay, the next I’m completely drained. It can be a brief kiss of the sun or having the curtains open on a sunny day. The fatigue isn't just “tired.” It’s a bone-deep exhaustion that sleep doesn’t fix. The brain fog creeps in, the joints ache, and the weight of not knowing when it’ll lift can be overwhelming.

But despite it all—I’m still here. I’m still learning. I’m still fighting for my health and joy."

 
(Patty and Cheryl)
Sisters showing up for each other for life.

What Helps Me Keep Going

Managing Lupus isn’t about magic fixes. There’s no perfect pill or one-size-fits-all solution. But there are things that help me stay grounded and better manage my symptoms. The big three?

Consistency of Sleep

Protect your rest like your life depends on it—because in many ways, it does. A consistent bedtime and sleep routine reduces my flares, improves mental clarity, and gives immune system a chance to reset. Learn to listen to your body and honor the rest it needs without guilt.

Intentional Nutrition

Food isn’t just fuel—it’s medicine. Focus on anti-inflammatory foods, hydration, and gentle nutrition that supports your gut and immune system. Some days that means meal prepping; other days it means a warm soup and grace. But try to stay consistent because you feel the difference when you don’t.

Radical Self-Love

This one is the most critical to learn. Many push themselves to keep up with everyone else, to “power through” the pain. Honoring your limits is not weakness—it’s wisdom. Give yourself permission to cancel, to say no, to prioritize my health without apology. Speak kindly to yourself, especially on hard days.

If You Know Someone With Lupus…

• Offer them understanding—not advice.
• Give them grace when they say “maybe” instead of “yes.”
• Don’t assume they’re fine because they “look fine.”
• And when in doubt, just say: “I believe you. I’m here.”

Because that’s what we really need: to feel seen, heard, and supported in a world that doesn’t always understand invisible illness.

To anyone living with Lupus:

I see you. I’m with you. And you’re stronger than you know.