Living in the Shadows: The Quiet Loneliness of Having a Complex Disease

Over the past few weeks, I’ve been forced into a kind of stillness I never asked for. Breaking my right leg has slowed my body to a halt. Still, it has also cracked open a new layer of loneliness, vulnerability, and emotional heaviness that so many people with complex chronic diseases know too well.

I can’t drive. I can’t move freely. I can’t even do the simplest things without someone helping me.

And even though I’m surrounded by people who love me, there is a deep part of this journey that feels lonely—because it’s not just the broken bone. It’s the reality of living with lupus, an unpredictable and complicated disease, while also trying to navigate daily life in a body that doesn’t always cooperate.

When Slowing Down Feels Like Falling Behind

People keep telling me, “You need to rest,” “You need to sit down,” “You can’t do everything.”

And they’re right. But what they don’t see is what slowing down feels like.

It feels like I’m not doing enough. It feels like I’m letting people down. It feels like my purpose is paused—but the world keeps moving.

When you already live with a complex chronic disease, being forced to rely on others can make you feel less than. The guilt, the frustration, the emotional exhaustion—it all sits heavily on the heart.

Invisible Pain, Visible Strength

Living with a broken leg has made my invisible illness feel even more misunderstood. People can see the cast, but they still can’t see the lupus pain. They can’t see the fatigue, the fear, or the mental load that comes with a disease that rarely makes sense—even to doctors.

Complex illnesses like lupus come with layers of emotional strain:

• The anxiety of not knowing what your body will do next.

• The confusion of juggling symptoms that never show up the same way twice.

• The heartbreak of being dismissed or gaslighted when you finally ask for help.

  
  

And when you’re already battling all of that, then add an injury that steals your independence—it can feel crushing, isolating, and yes, deeply depressing at times.

But Here’s What Keeps Me Going

Even in this season of forced stillness, I am learning that my worth is not measured by how much I can do. My value is not tied to movement, productivity, or independence.

And I want every lupus warrior, every chronic illness fighter, every person feeling unseen to hear this:

You are not invisible. You are not a burden. You are not falling behind. You are living through something incredibly hard—and still finding strength every day.

You Are Not Alone. Your Story Matters.

If you are living with lupus or another complex chronic condition, and you’ve felt lonely, dismissed, overwhelmed, or “not enough,” I see you. And I would love to hear your story.

Sharing our truths helps us build understanding, connection, and a community where no warrior feels alone.

To share your story, please email us at: info@mk4lupus.org. Learn more: www.mk4lupus.org

Your voice could be the encouragement someone else needs.

With love, La Tanya Pitts-Lipprand

Founder & Executive Director, Marlene’s Kaleidoscope Foundation