May is Lupus Awareness Month – Time to Shed Some Light on the Shadows
May 21
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May is one of my favorite months. Spring brings new life and vibrant colors to our surroundings. And, it’s also Lupus Awareness Month. A perfect time to shed light on the challenges faced by approximately 5 million people living with lupus worldwide.
The Face of an Invisible Illness
They called lupus "the invisible illness". That’s because those living with it may not show obvious symptoms while fighting the crushing inner struggles. Your friend who cancels plans at the last minute might be having a lupus flare-up. Your colleague who seems perfectly fine in meetings might be going through joint pain, extreme fatigue, or cognitive fog.
The unpredictability of lupus creates a very unique burden. A burden of never knowing when your immune system might turn against your tissues and organs, causing inflammation, pain, and damage that can affect practically any part of the body.
More than the Butterfly Rash
While the revealing butterfly-shaped facial rash is the most recognized symptom of lupus, the disease manifests differently in each person. Some warriors battle kidney inflammation that threatens organ function, others struggle with painful joint swelling, while many fight an overwhelming fatigue that no amount of rest seems to fix.
The most challenging (and annoying) of all is that lupus doesn't follow a predictable pattern. Periods of relative wellness (remission) can quickly change into severe flare-ups that can be triggered by sunlight, stress, or seemingly nothing at all.
The Lupus Life – From Diagnosis to Management
Getting diagnosis often can span for years. Patients see an average of three different doctors before receiving proper diagnosis. And even after the diagnosis, finding effective treatment requires patience and perseverance. While there’s no cure yet, the advances in medication and treatment approaches are helping lupus warriors lead fuller lives than ever before.
How You Can Make a Difference This May
Awareness is the first step toward greater understanding and support. These are simple ways to participate in Lupus Awareness Month:
Wear purple, the official color of lupus awareness
Share factual information about lupus on social media
Support lupus research organizations with donations
Check in with friends or family members living with lupus
Listen without judgment to those sharing their lupus stories
My Personal Lupus Drive
As a lupus warrior since 2016, I've experienced firsthand the rollercoaster that is life with this condition. Currently, I'm grateful to be in remission (as I like to say, "the wolf in me is sleeping" 😊). Living with lupus inspired me to write my first book, "Say Hello to My Friend Lupus". This book is a perfect mixture of my struggles and my story along with some actionable steps and friendly advice for living better with lupus.
Going through symptom tracking, self-care, and finding small moments of joy despite all the challenges, I've also created three supplemental resources. There is a soothing coloring book, a practical symptom tracker, and a collection of inspirational quotes with additional space for journaling. These tools grew directly from what I needed most during my difficult days.
A Community of Warriors
Behind the statistics are real people showing remarkable courage every day. They are parents caring for their children despite the devastating fatigue. They are professionals adapting work schedules around the unpredictable symptoms. They are advocates fighting for better care and research.
So, let's intensify their voices this May. Let’s celebrate their resilience, and join the movement toward a future where lupus no longer casts its shadow. Being aware makes you understand better, better understanding means support, and with enough support, we can get closer to better treatments and, ultimately, a cure.
Resources for Your Lupus Path
My lupus experience taught me that having the right tools and inspiration can make all the difference in dealing this unpredictable condition. That's the reason why I created "Say Hello to My Friend Lupus" alongside companion resources that support different aspects of living well with lupus. They span from creative expression through my coloring book, to practical health management with my symptom tracker, to emotional well-being with my journal of inspirational quotes.
I created resources I wish I'd had when I first heard the word "lupus" in my doctor's office. You can explore all these books and see if they might support your path (or help you better understand a loved one's experience) by visiting the "My Books" section of this website. There you'll find detailed descriptions and convenient links to purchase them on Amazon.
Join Me This Lupus Awareness Month
This May, I invite you to take three simple actions:
Share knowledge: Forward this post to someone who might be struggling with unexplained symptoms or to friends and family who want to better understand lupus.
Practice compassion: Reach out to a lupus warrior in your life with a specific offer of help. It can be a prepared meal during a flare, a sunscreen care package, or simply a listening ear without judgment.
Explore resources: Visit the "My Books" page to see if my lupus toolkit might support you or someone you love on this path. Sometimes knowing you're not alone in what your experience can be quite a powerful medicine.
Joined together, we can turn the invisible visible and bring lupus out of the shadows and into the light. With one conversation, one act of understanding, and one shared resource at a time.
