Finding Our Voice Unmasking the Hidden Struggles of Living with Lupus

Dear Friends, Partners, and Community,

Today, I want to share the hidden pain and struggles faced by many of us living with lupus. This condition often feels like a thief, stealing our joy and energy without warning.

In May, I woke up to an unbearable pain in my foot. It was so intense that I couldn’t stand up. I collapsed while trying to reach the bathroom, needing my husband’s help to get through the next two days. I felt completely helpless, unable to walk or care for myself.

When I finally reached the hospital, I wasn’t looking for pain medications. I wanted answers. Instead of finding support, I saw seven different doctors, only to be told what I already feared: “You’re having a lupus flare.” Medicines were handed to me without a deeper understanding of my situation.

This experience reflects what countless lupus patients go through. We often feel invisible, needing to assert ourselves for better care and understanding. Despite the pain, we wear smiles that mask our reality. But it's essential to stop this silence.

The Unseen Battle

Living with lupus resembles engaging in a never-ending battle, often unnoticed by those around us. Symptoms like fatigue, joint pain, and skin rashes can disrupt our daily lives, but they are not always visible to others. A striking statistic from the Lupus Foundation of America indicates that 90% of people with lupus are women, often diagnosed during their most productive years, typically between ages 15 and 44.

Lupus warriors frequently find themselves explaining their condition to family, friends, and even doctors. This burden can be exhausting. For instance, less than 50% of lupus patients report having supportive friends or family who truly understand their struggles, leading to increased feelings of isolation.

The toll extends beyond physical pain. Emotional distress can also take hold. Many individuals experience anxiety and depression due to the lack of understanding and support, making it difficult to maintain relationships and a sense of normalcy.

The Importance of Advocacy

This is where advocacy plays a crucial role. It's essential to raise awareness about lupus and its challenges. By sharing our stories, we shed light on the complexities of this disease, fostering empathy and understanding.

Initiating conversations about lupus, whether at work or in the community, is critical. Each discussion contributes to breaking barriers. Sharing statistics can also help. For example, an estimated 1.5 million Americans are affected by lupus, and many live in silence, feeling misunderstood.

Marlene’s Kaleidoscope Foundation

This is why I founded Marlene’s Kaleidoscope Foundation. Our mission is to give lupus warriors a voice, create a safe space, and provide a reason to hope.

Our foundation focuses on educating the public about lupus, advocating for improved healthcare, and uplifting those living with this condition. By coming together, we can build a supportive community that empowers individuals to share their experiences and seek the help they need.

How You Can Help

Here’s how you can make a difference:

Start the Conversation

Discuss lupus at work, home, or in your community. Each conversation helps raise awareness and promotes understanding.

Donate Today

Your financial support directly helps us educate and advocate for those affected by lupus. Even a small amount goes a long way in supporting our mission.

Volunteer Your Time

Share your skills with our mission. Whether you can assist at events or help in administrative tasks, every bit of support counts.

Be Part of the Movement

Support lupus warriors not just during Lupus Awareness Month in May, but every day. Join us to raise awareness and provide vital resources for those affected by lupus.

Visit www.mk4lupus.org to learn more and find out how you can take action.

The Power of Community

Behind every warrior like me lies a story that resonates deeply. It’s too painful to hide and too powerful to ignore. Together, we can convert compassion into lasting change.

Community support is crucial for those living with lupus. Knowing that others understand your struggles provides enormous comfort. By sharing our experiences and standing by each other, we can create a network of strength and resilience.

A Journey of Hope and Empowerment

Living with lupus presents daily challenges, but it also signifies hope and empowerment. By unmasking these hidden struggles and sharing our stories, we can promote understanding and compassion.

Let’s break the silence and give lupus a voice. Together, we can advocate for change, support one another, and shape a brighter future for all lupus warriors.

With gratitude, light, and strength,

LaTanya Lipprand

Founder & CEO,

Marlene’s Kaleidoscope Foundation

Lupus Warrior