Listen to Lupus Stories
Picture this: You wake up from a regular night’s sleep with sore muscles and a redness across your face and arms. You assume it’s a sunburn, so you treat it as such, dab some aloe vera on the affected area and go on about your day. But it doesn’t go away—in fact, it keeps disappearing and reappearing at times when you haven’t been exposed to the sun. The sore muscles continue as well, and the pain intensifies over time.
Imagine this: You’re an 11-year-old aspiring gymnast with boundless energy until one day you experience chest pains and exhaustion, though your routine hasn’t changed in the least. When you can’t bear it anymore, your parents take you to the doctor, and just over a week later, you’re hospitalized for advanced kidney disease and a bacterial infection in your stomach.
These are just two examples of real-life journeys leading up to a Lupus diagnosis. There are 5 million more stories like that worldwide.
To fully grasp what Lupus warriors endure, those of us who don’t suffer from the autoimmune disease, or have any loved ones close by who do, should listen to their stories. We should hear how a minor symptom can become a major burden and see how their lives—and families and work—are impacted by this sometimes life-threatening condition. We can help make them feel heard.
Learn From Lupus Warriors
I first learned of Lupus when my childhood friend Lucy was diagnosed with the disease as an adult. I’m grateful to have reconnected with her before it was too late and applauded her for sharing her diagnosis publicly to help others, but we lost her far too soon. She helped me to understand the serious nature of Lupus, and because of what I learned from her, I became a Global Ambassador for The Lupus Foundation of America and in conjunction with them, established The Lucy Vodden Research Grant Award 10 years ago.
Education is the key to empathy in any situation, which is why it’s so helpful to learn more about Lupus. Though a cure has not yet been found, the more research that scientists conduct and the more we as a global community educate ourselves about Lupus and discuss it, the closer we’ll be to ending the suffering of those who have it.
Love Those Impacted by Lupus
Until that cure is discovered, a simple way to make a difference is to have compassion for the challenges faced by Lupus patients. From the sudden joint pain of a flare-up to an unexpected and debilitating exhaustion, many who suffer do so in silence because they don’t want to burden others. There can also be a toll on the mental health of patients and their loved ones, because of the roller-coaster-like experience that often accompanies the disease, where one day the patient is fine and the next they’re in the hospital. I know I would find that difficult to deal with.
The best we can do for our family, friends, colleagues and acquaintances who have Lupus, is to shower them with patience and love. We can’t know what they’re going through first-hand, but we can certainly express empathy for their situation…
Make Lupus Visible
One of the most significant ways all of us can work together to end Lupus, is to Make Lupus Visible. Today happens to be ‘Put on Purple Day’ which encourages all of us to wear something purple and take a selfie or tint our profile pictures purple on social media to raise awareness.
It’s also important to share information not just today, but year-round, to continue to educate the broader community on what Lupus is all about. The Lupus Foundation has created a helpful toolkit, with prepared materials you can use to spread accurate, factual information about the disease, in a simple way.
Plus, there are several other ways you can get involved, including joining races and walks, becoming an advocate, or making a monetary contribution.
Every action, big or small makes a meaningful, positive impact.
If we all remember to Listen, Learn, Love and Make Lupus Visible, we’ll be that much closer to solving the mystery of the disease and finding a cure…
Great article to raise the awareness around Lupus. Thank you for caring.
Wonderful article! Both my sisters, Fran and Louise, were victims of Lupus and were taken far before their time. Thank you for sharing this article and for doing so much to raise awareness.