As some of our readers and followers may know, May is Lupus awareness month. And while we celebrate and support our Lupus Warriors everyday here at Sungrubbies, during the month of May we try to educate ourselves and promote awareness and visibility to the disease that finds itself in many cases, quite “invisible”. Earlier this week, we took the time to meet with Wendy Rodgers after participating in a Zoom Lupus awareness month kickoff party (keeping it COVID-safe) to learn about Lupus and her experience with the disease, both as an advocate for awareness in the Lupus Organization and as a Lupus Warrior herself for over 20 years.
What kind of Lupus do you have and when did you receive your diagnosis?
I was diagnosed in 2000, after suffering for many years with symptoms since about 15 years old. Looking back, there were many symptoms that I had that I chalked up to adolescence and the Texas heat such as acne, major sunburns and photosensitivity, and even the famous Lupus “Butterfly Rash”.
What kind of Lupus do you have?
First, let me run down the basic types of Lupus as there are four main kinds. Lupus is a chronic autoimmune disease where the body basically is attacking itself. It is not contagious, but it is lifelong and comes and goes with varying degrees. There is
Systemic that affects your organs, most severely to the kidneys. Other organs are affected and of course your skin is your largest organ. Then there is neonatal-isolated to infants, over time they often get better. Thirdly, there is a drug induced form that comes about when some medication triggers lupus like symptoms (once discarded, you will see these symptoms go away). Lastly there is cutaneous lupus which can manifest in hair loss, rashes, discoloration, two tones of skin and in some cases loss of pigmentation which leads to almost like a “giraffe” effect on the skin for lack of a better description. I have systemic Lupus. My skin has been affected over the years but not to the level or extent of those that have cutaneous Lupus.
How has Lupus impacted you psychologically aside from the physical symptoms you have endured?
People don’t often believe you are sick because you don’t look sick. When you suffer from hair loss or rashes, people will see the physical symptoms and often times that’s a relief because you are believed. The nature of the disease is that it comes and goes and ranges from mild to severe, and these symptoms can change on a day-to-day basis. Waking up to think, “How am I going to be impacted today?”
Being seen as flaky, lazy, and sometimes even being labeled as a hypochondriac is quite difficult. Not being understood can be an emotional rollercoaster for many, including myself.
Why is it difficult for so many to diagnose Lupus?
Symptoms come and go. An ANA test is usually used, and if it is positive, you will be looked at but it is not always a clear indicator. In addition to the testing there is a set of eleven criterions that if you have four you will be considered to have Lupus. In most cases you have to build your case to get any medical treatment or attention.
How has having Lupus affected you when it comes to your sun exposure and activities?
For me, I am very thankful that my photosensitivity isn’t extreme but I have made some lifestyle adjustments like wearing sunscreen and makeup with sun protection in it, wearing UPF 50 sun hats and sun protective clothing. I also try to avoid going out in times where the sun is at its peak. Its definitely been an adjustment, but I would much rather avoid the consequences of sun exposure. For those with cutaneous Lupus, they may avoid the sun altogether, but the fact that there are many UPF 50 products that have come to market to address their photosensitivity has improved their quality of life and ability to enjoy the outdoors.
How did you get started with the Lupus Organization and what can others do to support Lupus Warriors?
Aspiring to further educate myself on my own disease is what drew me to the Lupus Foundation in the first place, and now I am the Senior Manager of Community Outreach and Engagement with my Masters in Public Health. One thing I know everyone fighting Lupus wants is to Make Lupus Visible. You can support that by educating yourself, speaking to those with Lupus and being empathetic about their experience and then donating to help raise awareness and for research. Participate in World Lupus Day on May 10th by sharing Lupus facts on your social media and wear your favorite purple clothes and accessories on May 21st to make Lupus visible. Even sharing information about Lupus at the bottom of your email is so appreciated and powerful.
During the month of May, Sungrubbies will be donating 20% of all proceeds from sales with the discount code: Lupusorg that also gets you 20% off clinically certified sun protective products. To learn more about Lupus and reach out to the Lupus Organization, please visit https://www.lupus.org. You can also reach out to Wendy directly at firstname.lastname@example.org.